Background Hip arthroscopies are often used in the treatment of intra-articular hip injuries. Patient-reported outcomes (PRO) are an important parameter in evaluating treatment. It is unclear which PRO questionnaires are specifically available for hip arthroscopy patients. The aim of this systematic review was to investigate which PRO questionnaires are valid and reliable in the evaluation of patients undergoing hip arthroscopy. Methods A search was conducted in Pubmed, Medline, CINAHL, the Cochrane Library, Pedro, EMBASE and Web of Science from 1931 to October 2010. Studies assessing the quality of PRO questionnaires in the evaluation of patients undergoing hip arthroscopy were included. The quality of the questionnaires was evaluated by the psychometric properties of the outcome measures. The quality of the articles investigating the questionnaires was assessed by the COSMIN list. Results Five articles identified three questionnaires; the Modified Harris Hip Score (MHHS), the Nonarthritic Hip Score (NAHS) and the Hip Outcome Score (HOS). The NAHS scored best on the content validity, whereas the HOS scored best on agreement, internal consistency, reliability and responsiveness. The quality of the articles describing the HOS scored highest. The NAHS is the best quality questionnaire. The articles describing the HOS are the best quality articles. Conclusions This systematic review shows that there is no conclusive evidence for the use of a single patient-reported outcome questionnaire in the evaluation of patients undergoing hip arthroscopy. Based on available psychometric evidence we recommend using a combination of the NAHS and the HOS for patients undergoing hip arthroscopy. PMID:21619610
Full Text Available Abstract Background This research was conducted to confirm the validity and reliability and to assess the responsiveness and clinical meaningfulness of the OnyCOE-t™, a questionnaire specifically designed to measure patient-reported outcomes (PRO associated with toenail onychomycosis. Methods 504 patients with toenail onychomycosis randomized to receive 12 weeks of terbinafine 250 mg/day with or without target toenail debridement in the IRON-CLAD® trial completed the OnyCOE-t™ at baseline, weeks 6, 12, 24, and 48. The OnyCOE-t™ is composed of 6 multi-item scales and 1 single-item scale. These include a 7-item Toenail Symptom assessment, which comprises both Symptom Frequency and Symptom Bothersomeness scales; an 8-item Appearance Problems scale; a 7-item Physical Activities Problems scale; a 1-item Overall Problem scale; a 7-item Stigma scale; and a 3-item Treatment Satisfaction scale. In total, 33 toenail onychomycosis-specific items are included in the OnyCOE-t™. Clinical data, in particular the percent clearing of mycotic involvement in the target toenail, and OnyCOE-t™ responses were used to evaluate the questionnaire's reliability, validity, responsiveness, and the minimally clinical important difference (MCID. Results The OnyCOE-t™ was shown to be reliable and valid. Construct validity and known groups validity were acceptable. Internal consistency reliability of multi-item scales was demonstrated by Cronbach's alpha > .84. Responsiveness was good, with the Treatment Satisfaction, Symptom Frequency, Overall Problem, and Appearance Problem scales demonstrating the most responsiveness (Guyatt's statistic of 1.72, 1.31, 1.13, and 1.11, respectively. MCID was evaluated for three different clinical measures, and indicated that approximately an 8.5-point change (on a 0 to 100 scale was clinically meaningful based on a 25% improvement in target nail clearing. Conclusion The OnyCOE-t™ questionnaire is a unique, toenail-specific PRO
Full Text Available The efficacy of diabetes treatment should not be evaluated solely by HbA1c levels as they should also focus on patient-reported outcomes (PROs, such as patient satisfaction, wellbeing and quality of life. The Diabetes Treatment Satisfaction Questionnaire (DTSQ has been developed to assess patient satisfaction with diabetes treatment. DTSQ has been translated into more than 100 languages and is widely used in many countries, since it is relatively easy to answer and is used for both patients with and without medical therapy. Novel therapeutic options, such as insulin analogs, incretin-based therapy and sodium-glucose cotransporter 2 (SGLT2 inhibitors, have been shown to improve patient satisfaction using DTSQ for assessments. DTSQ is not only used for comparisons between different medications or treatment strategies, but also can be used to assess the quality of diabetes care in clinical settings. This is important as an improvement in treatment satisfaction may enhance patients’ self-efficacy and adherence to therapy, leading to the achievement of long-term stable glycemic control and reduced risk of diabetic complications. In this review, we summarize the current topics in DTSQ, introducing our own experience, and discuss the role of PROs in diabetes treatment.
Hinman, Rana S; Dobson, Fiona; Takla, Amir; O'Donnell, John; Bennell, Kim L
The most reliable patient-reported outcomes (PROs) for people with femoroacetabular impingement (FAI) is unknown because there have been no direct comparisons of questionnaires. Thus, the aim was to evaluate the test-retest reliability of six existing PROs in a single cohort of young active people with hip/groin pain consistent with a clinical diagnosis of FAI. Young adults with clinical FAI completed six PRO questionnaires on two occasions, 1-2 weeks apart. The PROs were modified Harris Hip Score, Hip dysfunction and Osteoarthritis Score, Hip Outcome Score, Non-Arthritic Hip Score, International Hip Outcome Tool, Copenhagen Hip and Groin Outcome Score. 30 young adults (mean age 24 years, SD 4 years, range 18-30 years; 15 men) with stable symptoms participated. Intraclass correlation coefficient(3,1) values ranged from 0.73 to 0.93 (95% CI 0.38 to 0.98) indicating that most questionnaires reached minimal reliability benchmarks. Measurement error at the individual level was quite large for most questionnaires (minimal detectable change (MDC95) 12.4-35.6, 95% CI 8.7 to 54.0). In contrast, measurement error at the group level was quite small for most questionnaires (MDC95 2.2-7.3, 95% CI 1.6 to 11). The majority of the questionnaires were reliable and precise enough for use at the group level. Samples of only 23-30 individuals were required to achieve acceptable measurement variation at the group level. Further direct comparisons of these questionnaires are required to assess other measurement properties such as validity, responsiveness and meaningful change in young people with FAI.
Thorborg, K.; Tijssen, M.; Habets, B.
BACKGROUND/AIM: To recommend Patient-Reported Outcome (PRO) questionnaires to measure hip and groin disability in young-aged to middle-aged adults. METHODS: A systematic review was performed in June 2014. The methodological quality of the studies included was determined using the COnsensus......-based Standards for the selection of health Measurement INstruments list (COSMIN) together with standardised evaluations of measurement properties of each PRO. RESULTS: Twenty studies were included. Nine different questionnaires for patients with hip disability, and one for hip and groin disability, were...
Kimball, Alexa B; Sundaram, Murali; Banderas, Benjamin; Foley, Catherine; Shields, Alan L
Two patient-reported outcome (PRO) questionnaires, the Hidradenitis Suppurativa Symptom Assessment (HSSA) and Hidradenitis Suppurativa Impact Assessment (HSIA), were developed to measure signs, symptoms and impacts of HS in treatment efficacy studies. In accordance with FDA guidelines and published best practices, four stages of research were conducted to create the questionnaires: concept elicitation, questionnaire construction, content evaluation and psychometric evaluation. Subjects (N = 20) who participated in the concept elicitation stage reported 15 unique HS-related signs and symptoms and 51 impacts. Following this, eight sign and symptom concepts and 21 impacts were selected for construction of the HSSA and HSIA, respectively. During content evaluation, cognitive debriefing interviews with HS subjects (N = 20) confirmed subjects could read, comprehend and meaningfully respond to both questionnaires. Modifications made after this stage of work resulted in a nine-item HSSA and a 17-item HSIA. The HSSA and HSIA were subsequently entered into a US-based observational study (N = 40), and the scores produced by each were found to be reliable, construct valid, and able to distinguish among clinically distinct groups. The HSSA and HSIA are content-valid, HS-specific, PRO questionnaires with demonstrated ability to generate reliable, valid scores when administered to patients with HS in a research setting.
Palmer, Steven C; Stricker, Carrie T; DeMichele, Angela M; Schapira, Marilyn; Glanz, Karen; Griggs, Jennifer J; Jacobs, Linda A
Survivor distress is well represented in the literature, but less is known about survivors' concerns and how these relate to adaptation. Using a newly designed Survivorship Concern Scale, we examined concerns and their relationship to psychosocial adaptation among recent breast cancer (BC) survivors. One hundred forty-three stage 0-III BC survivors completed an online assessment including the Survivorship Concern Scale (0-3 scale; alpha = 0.91), unmet needs, quality of life (QoL), and anxiety and depressive symptoms within 1 year of end of treatment. Participants were predominately white (76%), middle-aged (51 years), married (70%), and college educated (79%). Eighty-two percent were stage I or II at diagnosis. Mean degree of survivorship concern was moderate (M = 1.75, SD = 0.70) though variable (range = 0.12-3.00). Survivorship concerns were not significantly related to disease, treatment, or demographic variables except income (p = 0.02). Degree of survivorship concern was significantly associated with all indices of psychosocial adaptation: unmet need (r = 0.50), physical and mental QoL (r = -0.32 and r = -0.32, respectively), depressive symptoms (r = 0.21), and anxiety symptoms (r = 0.51; all p psychosocial adaptation. Adequately addressing concerns may be a way to improve psychosocial outcomes early in the survivorship trajectory.
Arbuckle, Robert; Atkinson, Mark J; Clark, Marci; Abetz, Linda; Lohs, Jan; Kuhagen, Ilka; Harness, Jane; Draelos, Zoe; Thiboutot, Diane; Blume-Peytavi, Ulrike; Copley-Merriman, Kati
To develop the content for two new patient reported outcome (PRO) measures to: a) assess the severity of symptoms; and b) the impact of facial skin oiliness on emotional wellbeing using qualitative data from face to face, and internet focus groups in Germany and the US. Using input from initial treatment satisfaction focus groups (n = 42), a review of relevant literature and expert clinicians (n = 3), a discussion guide was developed to guide qualitative inquiry using Internet focus groups (IFGs). IFGs were conducted with German (n = 26) and US (n = 28) sufferers of oily skin. Questionnaire items were generated using coded transcript data from the focus groups. Cognitive debriefing was conducted online with 42 participants and face to face with an additional five participants to assess the comprehension of the items. There were equal numbers of male and female participants; mean age was 35.4 (SD 9.3) years. On average, participants had had oily skin for 15.2 years, and 74% (n = 40) reported having mild-moderate acne. Participants reported using visual, tactile and sensory (feel without touching their face) methods to evaluate the severity of facial oiliness. Oily facial skin had both an emotional and social impact, and was associated with feelings of unattractiveness, self-consciousness, embarrassment, irritation and frustration. Items were generated for a measure of oily skin severity (Oily Skin Self-Assessment Scale) and a measure of the impact of oily skin on emotional well-being (Oily Skin Impact Scale). Cognitive debriefing resulted in minor changes to the draft items and confirmed their face and content validity. The research provides insight into the experience of having oily skin and illustrates significant difficulties associated with the condition. Item content was developed for early versions of two PRO measures of the symptoms and emotional impact of oily facial skin. The psychometric validation of these measures reported elsewhere.
Full Text Available Abstract Objective To develop the content for two new patient reported outcome (PRO measures to: a assess the severity of symptoms; and b the impact of facial skin oiliness on emotional wellbeing using qualitative data from face to face, and internet focus groups in Germany and the US. Methods Using input from initial treatment satisfaction focus groups (n = 42, a review of relevant literature and expert clinicians (n = 3, a discussion guide was developed to guide qualitative inquiry using Internet focus groups (IFGs. IFGs were conducted with German (n = 26 and US (n = 28 sufferers of oily skin. Questionnaire items were generated using coded transcript data from the focus groups. Cognitive debriefing was conducted online with 42 participants and face to face with an additional five participants to assess the comprehension of the items. Results There were equal numbers of male and female participants; mean age was 35.4 (SD 9.3 years. On average, participants had had oily skin for 15.2 years, and 74% (n = 40 reported having mild-moderate acne. Participants reported using visual, tactile and sensory (feel without touching their face methods to evaluate the severity of facial oiliness. Oily facial skin had both an emotional and social impact, and was associated with feelings of unattractiveness, self-consciousness, embarrassment, irritation and frustration. Items were generated for a measure of oily skin severity (Oily Skin Self-Assessment Scale and a measure of the impact of oily skin on emotional well-being (Oily Skin Impact Scale. Cognitive debriefing resulted in minor changes to the draft items and confirmed their face and content validity. Conclusion The research provides insight into the experience of having oily skin and illustrates significant difficulties associated with the condition. Item content was developed for early versions of two PRO measures of the symptoms and emotional impact of oily facial skin. The psychometric validation of
Protopapa, Evangelia; van der Meulen, Jan; Moore, Caroline M; Smith, Sarah C
To critically review conceptual frameworks for available patient-reported outcome (PRO) questionnaires in men having radical prostatectomy (RP), psychometrically evaluate each questionnaire, and identify whether each is appropriate for use at the level of the individual patient. We searched PubMed, the Reports and Publications database of the University of Oxford Patient-Reported Outcomes Measurement Group and the website of the International Consortium for Health Outcomes Measurement (ICHOM) for psychometric reviews of prostate cancer-specific PRO questionnaires. From these we identified relevant questionnaires and critically appraised the conceptual content, guided by the Wilson and Cleary framework and psychometric properties, using well established criteria. The searches found four reviews and one recommendation paper. We identified seven prostate cancer-specific PROs: the Expanded Prostate Cancer Index Composite-26 (EPIC-26), Expanded Prostate Cancer Index Composite-50 (EPIC-50), University of California-Los Angeles Prostate Cancer Index (UCLA-PCI), Functional Assessment of Cancer Therapy - Prostate Cancer Subscale (FACT-P PCS), European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire - prostate specific 25-item (EORTC QLQ-PR25), Prostate Cancer - Quality of Life (PC-QoL), and Symptom Tracking and Reporting (STAR). Six out of seven measures purported to measure health-related quality of life (HRQL), but items focused strongly on urinary and sexual symptoms/functioning. The remaining questionnaire (STAR) claimed to assess functional recovery after RP. The psychometric evidence for these questionnaires was incomplete and variable in quality; none had evidence that they were appropriate for use with individual patients. Several questionnaires provide the basis of measures of urinary and/or sexual symptoms/functioning. Further work should explore other aspects of HRQL that are important for men having RP. Further psychometric work
Oude Voshaar, Antonius H.; ten Klooster, Peter M.; Glas, Cornelis A.W.; Vonkeman, Harald Erwin; Krishnan, Eswar; van de Laar, Mart A F J
OBJECTIVE: To evaluate and compare the measurement precision and sensitivity to change of the Health Assessment Questionnaire disability index (HAQ DI), the Short Form 36 physical functioning scale (PF-10), and simulated Patient-Reported Outcomes Measurement Information System (PROMIS) physical
The development and validation of a multidimensional sum-scaling questionnaire to measure patient-reported outcomes in acute respiratory tract infections in primary care: the Acute Respiratory Tract Infection Questionnaire: ARTIQ
Aabenhus, R.; Thorsen, H.; Siersma, V.
OBJECTIVE: Patient-reported outcomes are seldom validated measures in clinical trials of acute respiratory tract infections (ARTIs) in primary care. We developed and validated a patient-reported outcome sum-scaling measure to assess the severity and functional impacts of ARTIs. METHODS: Qualitative...... interviews and field testing among adults with an ARTI were conducted to ascertain a high degree of face and content validity of the questionnaire. Subsequently, a draft version of the Acute Respiratory Tract Infection Questionnaire (ARTIQ) was statistically validated by using the partial credit Rasch model......, sum-scaling questionnaire with high face and content validity and adequate psychometric properties for assessing severity and functional impacts from ARTIs in adults is available to clinical trials and audits in primary care....
Wurz, Amanda; Brunet, Jennifer
Physical activity is increasingly being studied as a way to improve psychosocial outcomes (e.g., quality of life, self-efficacy, physical self-perceptions, self-esteem, body image, posttraumatic growth) among survivors of adolescent and young adult (AYA) cancer. Assessing levels of and associations between self-reported physical activity and psychosocial outcomes requires clear, appropriate, and relevant questionnaires. To explore how survivors of AYA cancer interpreted and responded to the following eight published questionnaires: Leisure Time Exercise Questionnaire, Exercise Self-Efficacy Scale, Physical Self-Description Questionnaire, Rosenberg Global Self-Esteem Scale, Multidimensional Body-Self Relations Questionnaire, Posttraumatic Growth Inventory, Functional Assessment of Cancer Therapy-General (FACT-G), RAND 36-Item Health Survey 1.0 (RAND-36), cognitive interviews were conducted with three men and four women age 18-36 years who were diagnosed with cancer at age 16-35 years. Initially, the first seven questionnaires listed above were assessed. Summaries of the interviews were prepared and compared across participants. Potential concerns were identified with the FACT-G; thus, a second interview was conducted with participants to explore the clarity, appropriateness, and relevance of the RAND-36. Concerns identified for the FACT-G related mostly to the lack of relevance of items pertaining to cancer-specific aspects of quality of life given that participants were posttreatment. No or few concerns related to comprehension and/or structure/logic were identified for the other questionnaires. In general, the questionnaires assessed were clear, appropriate, and relevant. Participants' feedback suggested they could be used to assess self-reported physical activity and varied psychosocial outcomes in studies with survivors of AYA cancer, either with or without slight modifications.
Arbuckle, Robert; Atkinson, Mark J; Clark, Marci; Abetz, Linda; Lohs, Jan; Kuhagen, Ilka; Harness, Jane; Draelos, Zoe; Thiboutot, Diane; Blume-Peytavi, Ulrike; Copley-Merriman, Kati
Abstract Objective To develop the content for two new patient reported outcome (PRO) measures to: a) assess the severity of symptoms; and b) the impact of facial skin oiliness on emotional wellbeing using qualitative data from face to face, and internet focus groups in Germany and the US. Methods Using input from initial treatment satisfaction focus groups (n = 42), a review of relevant literature and expert clinicians (n = 3), a discussion guide was developed to guide qualitative inquiry usi...
Kandel, Himal; Khadka, Jyoti; Lundström, Mats; Goggin, Michael; Pesudovs, Konrad
To identify the questionnaires used to assess refractive surgery outcomes, assess the available questionnaires in regard to their psychometric properties, validity, and reliability, and evaluate the performance of the available questionnaires in measuring refractive surgery outcomes. An extensive literature search was done on PubMed, MEDLINE, Scopus, CINAHL, Cochrane, and Web of Science databases to identify articles that described or used at least one questionnaire to assess refractive surgery outcomes. The information on content quality, validity, reliability, responsiveness, and psychometric properties was extracted and analyzed based on an extensive set of quality criteria. Eighty-one articles describing 27 questionnaires (12 refractive error-specific, including 4 refractive surgery-specific, 7 vision-but-non-refractive, and 8 generic) were included in the review. Most articles (56, 69.1%) described refractive error-specific questionnaires. The Quality of Life Impact of Refractive Correction (QIRC), the Quality of Vision (QoV), and the Near Activity Visual Questionnaire (NAVQ) were originally constructed using Rasch analysis; others were developed using the Classical Test Theory. The National Eye Institute Refractive Quality of Life questionnaire was the most frequently used questionnaire, but it does not provide a valid measurement. The QoV, QIRC, and NAVQ are the three best existing questionnaires to assess visual symptoms, quality of life, and activity limitations, respectively. This review identified three superior quality questionnaires for measuring different aspects of quality of life in refractive surgery. Clinicians and researchers should choose a questionnaire based on the concept being measured with superior psychometric properties. [J Refract Surg. 2017;33(6):416-424.]. Copyright 2017, SLACK Incorporated.
The development and validation of a multidimensional sum-scaling questionnaire to measure patient-reported outcomes in acute respiratory tract infections in primary care: the acute respiratory tract infection questionnaire.
Aabenhus, Rune; Thorsen, Hanne; Siersma, Volkert; Brodersen, John
Patient-reported outcomes are seldom validated measures in clinical trials of acute respiratory tract infections (ARTIs) in primary care. We developed and validated a patient-reported outcome sum-scaling measure to assess the severity and functional impacts of ARTIs. Qualitative interviews and field testing among adults with an ARTI were conducted to ascertain a high degree of face and content validity of the questionnaire. Subsequently, a draft version of the Acute Respiratory Tract Infection Questionnaire (ARTIQ) was statistically validated by using the partial credit Rasch model to test dimensionality, objectivity, and reliability of items. Test of known groups' validity was conducted by comparing participants with and without an ARTI. The final version of the ARTIQ consisted of 38 items covering five dimensions (Physical-upper, Physical-lower, Psychological, Sleep, and Medicine) and five single items. All final dimensions were confirmed to fit the Rasch model, thus enabling sum-scaling of responses. The ARTIQ scores in participants with an ARTI were significantly higher than in those without ARTI (known groups' validity). A self-administered, multidimensional, sum-scaling questionnaire with high face and content validity and adequate psychometric properties for assessing severity and functional impacts from ARTIs in adults is available to clinical trials and audits in primary care. Copyright © 2013, International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc.
Khadka, Jyoti; McAlinden, Colm; Gothwal, Vijaya K; Lamoureux, Ecosse L; Pesudovs, Konrad
To investigate the effect of rating scale designs (question formats and response categories) on item difficulty calibrations and assess the impact that rating scale differences have on overall vision-related activity limitation (VRAL) scores. Sixteen existing patient-reported outcome instruments (PROs) suitable for cataract assessment, with different rating scales, were self-administered by patients on a cataract surgery waiting list. A total of 226 VRAL items from these PROs in their native rating scales were included in an item bank and calibrated using Rasch analysis. Fifteen item/content areas (e.g., reading newspapers) appearing in at least three different PROs were identified. Within each content area, item calibrations were compared and their range calculated. Similarly, five PROs having at least three items in common with the Visual Function (VF-14) were compared in terms of average item measures. A total of 614 patients (mean age ± SD, 74.1 ± 9.4 years) participated. Items with the same content varied in their calibration by as much as two logits; "reading the small print" had the largest range (1.99 logits) followed by "watching TV" (1.60). Compared with the VF-14 (0.00 logits), the rating scale of the Visual Disability Assessment (1.13 logits) produced the most difficult items and the Cataract Symptom Scale (0.24 logits) produced the least difficult items. The VRAL item bank was suboptimally targeted to the ability level of the participants (2.00 logits). Rating scale designs have a significant effect on item calibrations. Therefore, constructing item banks from existing items in their native formats carries risks to face validity and transmission of problems inherent in existing instruments, such as poor targeting.
Yasser El Miedany
Full Text Available Objectives. To assess the validity, reliability, and responsiveness to change of a patient self-reported questionnaire combining the Widespread Pain Index and the Symptom Severity Score as well as construct outcome measures and comorbidities assessment in fibromyalgia patients. Methods. The PROMs-FM was conceptualized based on frameworks used by the WHO Quality of Life tool and the PROMIS. Initially, cognitive interviews were conducted to identify item pool of questions. Item selection and reduction were achieved based on patients as well as an interdisciplinary group of specialists. Rasch and internal consistency reliability analyses were implemented. The questionnaire included the modified ACR criteria main items (Symptom Severity Score and Widespread Pain Index, in addition to assessment of functional disability, quality of life (QoL, review of the systems, and comorbidities. Every patient completed HAQ and EQ-5D questionnaires. Results. A total of 146 fibromyalgia patients completed the questionnaire. The PROMs-FM questionnaire was reliable as demonstrated by a high standardized alpha (0.886–0.982. Content construct assessment of the functional disability and QoL revealed significant correlation (p<0.01 with both HAQ and EQ-5D. Changes in functional disability and QoL showed significant (p<0.01 variation with diseases activity status in response to therapy. There was higher prevalence of autonomic symptoms, CVS risk, sexual dysfunction, and falling. Conclusions. The developed PROMs-FM questionnaire is a reliable and valid instrument for assessment of fibromyalgia patients. A phased treatment regimen depending on the severity of FMS as well as preferences and comorbidities of the patient is the best approach to tailored patient management.
Dür, Mona; Steiner, Günter; Fialka-Moser, Veronika; Kautzky-Willer, Alexandra; Dejaco, Clemens; Prodinger, Birgit; Stoffer, Michaela Alexandra; Binder, Alexa; Smolen, Josef; Stamm, Tanja Alexandra
Self-reported outcome instruments in health research have become increasingly important over the last decades. Occupational therapy interventions often focus on occupational balance. However, instruments to measure occupational balance are scarce. The aim of the study was therefore to develop a generic self-reported outcome instrument to assess occupational balance based on the experiences of patients and healthy people including an examination of its psychometric properties. We conducted a qualitative analysis of the life stories of 90 people with and without chronic autoimmune diseases to identify components of occupational balance. Based on these components, the Occupational Balance-Questionnaire (OB-Quest) was developed. Construct validity and internal consistency of the OB-Quest were examined in quantitative data. We used Rasch analyses to determine overall fit of the items to the Rasch model, person separation index and potential differential item functioning. Dimensionality testing was conducted by the use of t-tests and Cronbach's alpha. The following components emerged from the qualitative analyses: challenging and relaxing activities, activities with acknowledgement by the individual and by the sociocultural context, impact of health condition on activities, involvement in stressful activities and fewer stressing activities, rest and sleep, variety of activities, adaptation of activities according to changed living conditions and activities intended to care for oneself and for others. Based on these, the seven items of the questionnaire (OB-Quest) were developed. 251 people (132 with rheumatoid arthritis, 43 with systematic lupus erythematous and 76 healthy) filled in the OB-Quest. Dimensionality testing indicated multidimensionality of the questionnaire (t = 0.58, and 1.66 after item reduction, non-significant). The item on the component rest and sleep showed differential item functioning (health condition and age). Person separation index was 0
Bonner, Nicola; Abetz-Webb, Linda; Renault, Lydie; Caballero, Teresa; Longhurst, Hilary; Maurer, Marcus; Christiansen, Sandra; Zuraw, Bruce
Hereditary Angioedema (HAE), a rare genetic disease, manifests as intermittent, painful attacks of angioedema. Attacks vary in frequency and severity and include skin, abdominal and life-threatening laryngeal swellings. This study aimed to develop a patient reported outcome (PRO) tool for the assessment of HAE attacks, including their management and impact on patients' lives, for use in clinical studies, or by physicians in general practice. The results of open-ended face to face concept elicitation interviews with HAE patients in Argentina (n = 10) and the US (n = 33) were used to develop the first draft questionnaire of the HAE patient reported outcomes questionnaire (HAE PRO). Subsequently, in-depth cognitive debriefing interviews were performed with HAE patients in the UK (n = 10), Brazil (n = 10), Germany (n = 11) and France (n = 12). Following input from eight multinational clinical experts further cognitive interviews were conducted in the US (n = 12) and Germany (n = 12). Patients who experienced abdominal, cutaneous or laryngeal attacks of varying severity levels were included in all rounds of interviews. Across the rounds of interviews patients discussed their HAE attack symptoms, impacts and treatments. Cognitive debriefing interviews explored patient understanding and relevance of questionnaire items. All interviews were conducted face to face following a pre-defined semi-structured interview guide in the patient's native language. Patients reported a variety of HAE symptoms, attack triggers, warning signs, attack impacts and treatment options which were used to develop the HAE PRO. The HAE PRO was revised and refined following input from patients and clinical experts. The final 18-item HAE PRO provides an assessment of the HAE attack experience including symptoms, impacts, treatment requirements, healthcare resource use and loss of productivity caused by HAE attacks. Patient and expert input has contributed to the
Boissy, Patrice; Jacobs, Karen; Roy, Serge H
with a text-to-speech synthesizer to collect data electronically from self-report health outcome questionnaires. METHODS: Usability of the system was tested on a sample of 24 community-living older adults (7 men, 17 women) ranging in age from 63 to 93 years. After receiving a brief demonstration on the use...... of errors). RESULTS: Overall, participants found barcode scanning easy to learn, easy to use, and pleasant. Participants were marginally faster in completing the 16 survey questions when using pen entry (20/24 participants). The mean response time with the barcode scanner was 31 seconds longer than...... traditional pen entry for a subset of 16 questions (p = 0.001). The responsiveness of the scanning system, expressed as first scan success rate, was less than perfect, with approximately one-third of first scans requiring a rescan to successfully capture the data entry. The responsiveness of the system can...
Gelhorn, Heather L; Vernon, Margaret K; Stewart, Katie D; Miller, Michael G; Brod, Meryl; Althof, Stanley E; DeRogatis, Leonard R; Dobs, Adrian; Seftel, Allen D; Revicki, Dennis A
Hypogonadism, or low testosterone, is a common disorder. There are currently no patient-reported outcome (PRO) instruments designed to comprehensively evaluate the symptoms of hypogonadism and to detect changes in these symptoms in response to treatment. The purpose of this study was to develop a PRO instrument, the Hypogonadism Impact of Symptoms Questionnaire (HIS-Q) and to assess its content validity. A literature review, expert clinician input, and qualitative concept elicitation with 39 male hypogonadism patients (four focus groups: n = 25; individual interviews: n = 14; mean age 52.3 ± 14.3 years) from the USA were used to develop the draft HIS-Q. Subsequent cognitive interviews (n = 29; mean age 51.5 ± 15.4 years) were used to evaluate content validity. Emergent discussion with participants yielded symptoms within the sexual, physical, energy, sleep, cognition, and mood domains. Low libido and tiredness were most commonly reported. The initial version of the HIS-Q includes 53 items that were consistently understood by the participants, who found the instrument to be relevant to their experiences with hypogonadism and comprehensive in the content coverage of symptoms. The HIS-Q is a comprehensive PRO measure of hypogonadism symptom severity in males. Its design elements, including the response options and recall period, were suitable, and content validity was confirmed.
McCabe, Colm; Bennett, Maxine; Doughty, Natalie; MacKenzie Ross, Robert; Sharples, Linda
Background: The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) is a disease-specific assessment tool used for the evaluation and follow-up of patients with pulmonary hypertension (PH). We describe a novel use for this questionnaire in its potential to predict clinical deterioration (CD) in two patient cohorts with subtypes of PH, idiopathic pulmonary arterial hypertension (IPAH), and chronic thromboembolic pulmonary hypertension (CTEPH) during an 8-year period. Methods: We retrospectively analyzed CAMPHOR scores obtained at baseline and at follow-up visits in patients under the care of our unit over an 8-year period to assess CD and survival, as well as 6-min walk distance (6MWD) and New York Heart Association (NYHA) class. Results: Using Cox regression, we demonstrated a significant predictive effect of CD from total CAMPHOR scores at study enrollment in IPAH and CTEPH (hazard ratios, 1.03 [95% CI, 1.01-1.05] and 1.04 [95% CI, 1.02-1.06] per unit score increase, respectively), as well as from CAMPHOR subscales as independent predictors. This predictive effect is diluted after adjusting for the prognostic effect of 6MWD and NYHA class. Repeated CAMPHOR assessment over time appears not to add predictive value of CD to that obtained at diagnosis, although it still informs physicians of important changes in self-reported symptoms. Conclusions: When emphasis is placed on the evaluation of patient perceptions, CAMPHOR may represent an alternative method of estimating the likelihood of CD. PMID:23430021
Problem Statement: The use of self-report questionnaires may lead to biases such as careless responses that distort the research outcomes. Early detection of careless responses in self-report questionnaires may reduce error, but little guidance exists in the literature regarding techniques for detecting such careless or random responses in…
Kessel, Kerstin A.; Fischer, Hanna; Vogel, Marco M.E.; Combs, Stephanie E.; Oechsner, Markus; Bier, Henning; Meyer, Bernhard
Stereotactic radiotherapy (RT) has been established as a valid treatment alternative in patients with vestibular schwannoma (VS). There is ongoing controversy regarding the optimal fractionation. Hearing preservation may be the primary goal for patients with VS, followed by maintenance of quality of life (QoL). From 2002 to 2015, 184 patients with VS were treated with radiosurgery (RS) or fractionated stereotactic radiotherapy (FSRT). A survey on current symptoms and QoL was conducted between February and June 2016. Median follow-up after RT was 7.5 years (range 0-14.4 years). Mean overall survival (OS) after RT was 31.1 years, with 94 and 87% survival at 5 and 10 years, respectively. Mean progression-free survival (PFS) was 13.3 years, with 5- and 10-year PFS of 92%. Hearing could be preserved in RS patients for a median of 36.3 months (range 2.3-13.7 years). Hearing worsened in 17 (30%) cases. Median hearing preservation for FSRT was 48.7 months (range 0.0-13.8 years); 29 (23%) showed hearing deterioration. The difference in hearing preservation was not significant between RS and FSRT (p = 0.3). A total of 123/162 patients participated in the patient survey (return rate 76%). The results correlate well with the information documented in the patient files for tinnitus and facial and trigeminal nerve toxicity. Significant differences appeared regarding hearing impairment, gait uncertainty, and imbalance. These data confirm that RS and FSRT are comparable in terms of local control for VS. RS should be reserved for smaller lesions, while FSRT can be offered independently of tumor size. Patient self-reported outcome during follow-up is of high value. The established questionnaire could be validated in the independent cohort. (orig.) [de
Patients’ attitudes and perceptions of two health-related quality-of-life questionnaires used to collect patient-reported outcome measures in the English National Health Service: A qualitative study of patients undergoing cardiac interventions
Bashir M Matata
Full Text Available Objectives: To explore patients’ views on the EuroQol-5D and Coronary Revascularisation Outcome Questionnaire, tools currently used for collecting patient-reported outcome measures in the English National Health Service. The key questions were as follows: (1 whether patients consider them sensitive enough to detect change in their health after cardiovascular disease interventions and (2 whether they consider the health-related quality-of-life questions as meaningful. Methods: Data were collected on patients’ views using focus groups. We held four focus groups selecting participants on the basis of their baseline and follow-up EuroQol-5D scores. Data were analysed using framework analysis and grounded theory. Results: Focus group participants confirmed that they had derived substantial health benefits from their cardiac interventions despite the lack of measurable effects on the EuroQol-5D scores. Participants felt that the EuroQol-5D questionnaire was limited because of the following reasons: Their health fluctuates from day to day. They had difficulty assessing their general health status on the visual analogue scale. They felt that the Coronary Revascularisation Outcome Questionnaire was limited because of the following reasons: They did not understand the clinical terms used. The impact of tiredness on their quality of life was not captured. They were unable to distinguish between the effects of their heart condition and other health issues. Additionally, neither questionnaire considers the adjustments people have made to their domestic arrangements to improve their health-related quality of life. Conclusion: This study provides evidence that the two questionnaires do not capture some aspects of health that patients consider important. Furthermore, the presence of co-morbidities masks the symptoms relating to the heart disease and the effect of their cardiac interventions. Future work on patient-reported outcome measures should consider
Kessel, Kerstin A.; Fischer, Hanna; Vogel, Marco M.E.; Combs, Stephanie E. [Technical University of Munich (TUM), Department of Radiation Oncology, Munich (Germany); Helmholtz Zentrum Muenchen, Institute of Innovative Radiotherapy (iRT), Neuherberg (Germany); Oechsner, Markus [Technical University of Munich (TUM), Department of Radiation Oncology, Munich (Germany); Bier, Henning [Technical University of Munich (TUM), Department of Otorhinolaryngology, Munich (Germany); Meyer, Bernhard [Technical University of Munich (TUM), Department of Neurosurgery, Munich (Germany)
Stereotactic radiotherapy (RT) has been established as a valid treatment alternative in patients with vestibular schwannoma (VS). There is ongoing controversy regarding the optimal fractionation. Hearing preservation may be the primary goal for patients with VS, followed by maintenance of quality of life (QoL). From 2002 to 2015, 184 patients with VS were treated with radiosurgery (RS) or fractionated stereotactic radiotherapy (FSRT). A survey on current symptoms and QoL was conducted between February and June 2016. Median follow-up after RT was 7.5 years (range 0-14.4 years). Mean overall survival (OS) after RT was 31.1 years, with 94 and 87% survival at 5 and 10 years, respectively. Mean progression-free survival (PFS) was 13.3 years, with 5- and 10-year PFS of 92%. Hearing could be preserved in RS patients for a median of 36.3 months (range 2.3-13.7 years). Hearing worsened in 17 (30%) cases. Median hearing preservation for FSRT was 48.7 months (range 0.0-13.8 years); 29 (23%) showed hearing deterioration. The difference in hearing preservation was not significant between RS and FSRT (p = 0.3). A total of 123/162 patients participated in the patient survey (return rate 76%). The results correlate well with the information documented in the patient files for tinnitus and facial and trigeminal nerve toxicity. Significant differences appeared regarding hearing impairment, gait uncertainty, and imbalance. These data confirm that RS and FSRT are comparable in terms of local control for VS. RS should be reserved for smaller lesions, while FSRT can be offered independently of tumor size. Patient self-reported outcome during follow-up is of high value. The established questionnaire could be validated in the independent cohort. (orig.) [German] Die stereotaktische Radiotherapie (RT) wurde als gueltige Behandlungsalternative bei Patienten mit Vestibularisschwannom (VS) etabliert. Diskussionen ueber die optimale Fraktionierung laufen jedoch. Der Erhalt von Hoervermoegen
Ferdinand, R F; Verhulst, F C
The ability of the Young Adult Self-Report (YASR), the Symptom Checklist (SCL-90) and the General Health Questionnaire (GHQ-28) to predict maladjustment across a 2-year time-span was assessed in a general population sample of 528 18- to 22-year-olds. Referral for mental health services and need for professional help were predicted by total problem scores of the YASR, the GHQ-28 and the SCL-90 and by the internalizing scale of the YASR. Furthermore, the internalizing scale predicted suicide attempts or suicidal ideation, whereas the externalizing scale predicted police contacts. The YASR delinquent behavior syndrome was the only significant predictor of alcohol abuse. The findings supported the validity of the YASR as an instrument for the assessment of psychopathology in young adults.
Efanov, J I; Shine, J J; Darwich, R; Besner Morin, C; Arsenault, J; Harris, P G; Danino, A M; Izadpanah, A
Patient-Reported Outcome Measures (PROMs) are important clinical devices for evaluating injuries and surgeries of the hand. However, some of the most widely used questionnaires, such as the MHQ and bMHQ, are currently unavailable in French, which prevents them from being used in the French Canadian province of Quebec as well as in other French-speaking nations. We therefore intend to develop valid and culturally adapted French translations of the afore-mentioned questionnaires. Two independent bilingual translators converted all English questionnaires to French. Two distinct translators then translated the French versions back to English in reverse-blinded fashion. Discrepancies between the original and second English versions were examined by a committee of four bilingual healthcare professionals before final French translations of all documents were produced. Thirty patients bilingual in French and English were then asked to complete the original and French versions of the MHQ and bMHQ. Their answers were compared in order to assess the accuracy of our translation. In light of these findings, revised French versions were produced. French versions of the MHQ and bMHQ questionnaires produced metrological qualities of validity and fidelity with an inter-class correlation superior to 0.90 and a kappa coefficient of 0.81 to 1. Clinical applicability revealed the distribution of scores according to disease process was reproducible between the English and French versions. PROM translation requires a rigorous process in order to achieve strong metrological qualities in both the original and translated versions. We produced French translations of the MHQ and bMHQ by abiding to the Beaton method of cross-cultural adaptation of self-reported measures. Copyright © 2017 SFCM. Published by Elsevier Masson SAS. All rights reserved.
Worse patient-reported outcome after lateral approach than after anterior and posterolateral approach in primary hip arthroplasty. A cross-sectional questionnaire study of 1,476 patients 1-3 years after surgery.
Amlie, Einar; Havelin, Leif I; Furnes, Ove; Baste, Valborg; Nordsletten, Lars; Hovik, Oystein; Dimmen, Sigbjorn
The surgical approach in total hip arthroplasty (THA) is often based on surgeon preference and local traditions. The anterior muscle-sparing approach has recently gained popularity in Europe. We tested the hypothesis that patient satisfaction, pain, function, and health-related quality of life (HRQoL) after THA is not related to the surgical approach. 1,476 patients identified through the Norwegian Arthroplasty Register were sent questionnaires 1-3 years after undergoing THA in the period from January 2008 to June 2010. Patient-reported outcome measures (PROMs) included the hip disability osteoarthritis outcome score (HOOS), the Western Ontario and McMaster Universities osteoarthritis index (WOMAC), health-related quality of life (EQ-5D-3L), visual analog scales (VAS) addressing pain and satisfaction, and questions about complications. 1,273 patients completed the questionnaires and were included in the analysis. Adjusted HOOS scores for pain, other symptoms, activities of daily living (ADL), sport/recreation, and quality of life were significantly worse (p < 0.001 to p = 0.03) for the lateral approach than for the anterior approach and the posterolateral approach (mean differences: 3.2-5.0). These results were related to more patient-reported limping with the lateral approach than with the anterior and posterolateral approaches (25% vs. 12% and 13%, respectively; p < 0.001). Patients operated with the lateral approach reported worse outcomes 1-3 years after THA surgery. Self-reported limping occurred twice as often in patients who underwent THA with a lateral approach than in those who underwent THA with an anterior or posterolateral approach. There were no significant differences in patient-reported outcomes after THA between those who underwent THA with a posterolateral approach and those who underwent THA with an anterior approach.
Abstract Background Nowadays, more and more clinical scales consisting in responses given by the patients to some items (Patient Reported Outcomes - PRO), are validated with models based on Item Response Theory, and more specifically, with a Rasch model. In the validation sample, presence of missing data is frequent. The aim of this paper is to compare sixteen methods for handling the missing data (mainly based on simple imputation) in the context of psychometric validation of PRO by a Rasch model. The main indexes used for validation by a Rasch model are compared. Methods A simulation study was performed allowing to consider several cases, notably the possibility for the missing values to be informative or not and the rate of missing data. Results Several imputations methods produce bias on psychometrical indexes (generally, the imputation methods artificially improve the psychometric qualities of the scale). In particular, this is the case with the method based on the Personal Mean Score (PMS) which is the most commonly used imputation method in practice. Conclusions Several imputation methods should be avoided, in particular PMS imputation. From a general point of view, it is important to use an imputation method that considers both the ability of the patient (measured for example by his\\/her score), and the difficulty of the item (measured for example by its rate of favourable responses). Another recommendation is to always consider the addition of a random process in the imputation method, because such a process allows reducing the bias. Last, the analysis realized without imputation of the missing data (available case analyses) is an interesting alternative to the simple imputation in this context.
Hess, Timothy R.; Rohlfing, Jessica E.; Hardy, Amanda O.; Glidden-Tracey, Cynthia; Tracey, Terence J. G.
This study examined whether the Outcome Questionnaire-45 (OQ) and its subscales assessed unique interpersonal distress. The Inventory of Interpersonal Problems (IIP) was used to assess discriminant validity for unique interpersonal distress. Participants (N = 121) were recruited from a southwestern university counselor training center. Significant…
McCollister, Deborah; Shaffer, Shannon; Badesch, David B; Filusch, Arthur; Hunsche, Elke; Schüler, René; Wiklund, Ingela; Peacock, Andrew
Regulators and clinical experts increasingly recognize the importance of incorporating patient-reported outcomes (PROs) in clinical studies of therapies for pulmonary arterial hypertension (PAH). No PAH-specific instruments have been developed to date in accordance with the 2009 FDA guidance for the development of PROs as endpoints in clinical trials. A qualitative research study was conducted to develop a new instrument assessing PAH symptoms and their impacts following the FDA PRO guidance. A cross-sectional study was conducted at 5 centers in the US in symptomatic PAH patients aged 18-80 years. Concept elicitation was based on 5 focus group discussions, after which saturation of emergent concepts was reached. A PRO instrument for PAH symptoms and their impacts was drafted. To assess the appropriateness of items, instructions, response options, and recall periods, 2 rounds of one-on-one cognitive interviews were conducted, with instrument revisions following each round. Additional interviews tested the usability of an electronic version (ePRO). PRO development considered input from an international Steering Committee, and translatability and lexibility assessments. Focus groups comprised 25 patients (5 per group); 20 additional patients participated in cognitive interviews (10 per round); and 10 participated in usability interviews. Participants had a mean ± SD age of 53.1 ± 15.8 years, were predominantly female (93 %), and were diverse in race/ethnicity, WHO functional class (FC I/II: 56 %, III/IV: 44 %), and PAH etiology (idiopathic: 56 %, familial: 2 %, associated: 42 %). The draft PRO instrument (PAH-SYMPACT®) was found to be clear, comprehensive, and relevant to PAH patients in cognitive interviews. Items were organized in a draft conceptual framework with 16 symptom items in 4 domains (respiratory symptoms, tiredness, cardiovascular symptoms, other symptoms) and 25 impact items in 5 domains (physical activities, daily activities, social
Abetz, Linda; Rajagopalan, Krithika; Mertzanis, Polyxane; Begley, Carolyn; Barnes, Rod; Chalmers, Robin
To develop and validate a comprehensive patient-reported outcomes instrument focusing on the impact of dry eye on everyday life (IDEEL). Development and validation of the IDEEL occurred in four phases: 1) focus groups with 45 dry eye patients to develop a draft instrument, 2) item generation, 3) pilot study to assess content validity in 16 patients and 4) psychometric validation in 210 subjects: 130 with non-Sjögren's keratoconjunctivitis sicca, 32 with Sjögren's syndrome and 48 controls, and subsequent item reduction. Focus groups identified symptoms and the associated bother, the impact of dry eye on daily life and the patients' satisfaction with their treatment as the central concepts in patients' experience of dry eye. Qualitative analysis indicated that saturation was achieved for these concepts and yielded an initial 112-item draft instrument. Patients understood the questionnaire and found the items to be relevant indicating content validity. Patient input, item descriptive statistics and factor analysis identified 55 items that could be deleted. The final 57-item IDEEL assesses dry eye impact constituting 3 modules: dry eye symptom-bother, dry eye impact on daily life comprising impact on daily activities, emotional impact, impact on work, and dry eye treatment satisfaction comprising satisfaction with treatment effectiveness and treatment-related bother/inconvenience. The psychometric analysis results indicated that the IDEEL met the criteria for item discriminant validity, internal consistency reliability, test-retest reliability and floor/ceiling effects. As expected, the correlations between IDEEL and the Dry Eye Questionnaire (a habitual symptom questionnaire) were higher than between IDEEL and Short-Form-36 and EuroQoL-5D, indicating concurrent validity. The IDEEL is a reliable, valid and comprehensive questionnaire relevant to issues that are specific to dry eye patients, and meets current FDA patient-reported outcomes guidelines. The use of this
Rackauskaite, Gija; Thorsen, Poul; Uldall, Peter Vilhelm
Purpose: To examine the reliability of the web-based GMFCS Family Report Questionnaire (GMFCS-FR) between 8 and 11 years old children, compared with the GMFCS-Expanded and Revised (GMFCS-E&R). Method: The GMFCS-FR was translated from the English GMFCS-FR into Danish after the CanChild guidelines;...... Danish children with CP. The tendency for less-ability rating by families is important when performing and comparing results from epidemiological studies based on GMFCS-FR and GMFCS-E&R. [Box: see text].......Purpose: To examine the reliability of the web-based GMFCS Family Report Questionnaire (GMFCS-FR) between 8 and 11 years old children, compared with the GMFCS-Expanded and Revised (GMFCS-E&R). Method: The GMFCS-FR was translated from the English GMFCS-FR into Danish after the CanChild guidelines......; only the order of levels was chosen like in the GMFCS-E&R. Families of 30 children with spastic and dystonic cerebral palsy (age from 8 to 11 years, randomly selected from a cerebral palsy register) answered the GMFCS-FR and were later interviewed by two physiotherapists. Participants and non...
Full Text Available Self-report questionnaires are economical instruments for routine outcome assessment. In this study, the performance of the German version of the Outcome Questionnaire-45 (OQ-45 and the Brief Symptom Inventory (BSI was evaluated when applied in analysis of the outcome quality of psychiatric and psychotherapeutic interventions. Pre-post data from two inpatient samples (N=5711 and one outpatient sample (N=239 were analyzed. Critical differences (reliable change index and cut-off points between functional and dysfunctional populations were calculated using the Jacobson and Truax method of calculating clinical significance. Overall, the results indicated that the BSI was more accurate than the OQ-45 in correctly classifying patients as clinical subjects. Nonetheless, even with the BSI, about 25% of inpatients with schizophrenia attained a score at admission below the clinical cut-off. Both questionnaires exhibited the highest sensitivity to psychopathology with patients with personality disorders. When considering the differences in the prescores, both questionnaires showed the same sensitivity to change. The advantage of using these self-report measures is observed primarily in assessing outpatient psychotherapy outcome. In an inpatient setting two main problems—namely, the low response rate and the scarce sensitivity to psychopathology with severely ill patients—limit the usability of self-report questionnaires.
Smallest detectable change and test-retest reliability of a self-reported outcome measure: Results of the Center for Epidemiologic Studies Depression Scale, General Self-Efficacy Scale, and 12-item General Health Questionnaire.
Ohno, Shotaro; Takahashi, Kana; Inoue, Aimi; Takada, Koki; Ishihara, Yoshiaki; Tanigawa, Masaru; Hirao, Kazuki
This study aims to examine the smallest detectable change (SDC) and test-retest reliability of the Center for Epidemiologic Studies Depression Scale (CES-D), General Self-Efficacy Scale (GSES), and 12-item General Health Questionnaire (GHQ-12). We tested 154 young adults at baseline and 2 weeks later. We calculated the intra-class correlation coefficients (ICCs) for test-retest reliability with a two-way random effects model for agreement. We then calculated the standard error of measurement (SEM) for agreement using the ICC formula. The SEM for agreement was used to calculate SDC values at the individual level (SDC ind ) and group level (SDC group ). The study participants included 137 young adults. The ICCs for all self-reported outcome measurement scales exceeded 0.70. The SEM of CES-D was 3.64, leading to an SDC ind of 10.10 points and SDC group of 0.86 points. The SEM of GSES was 1.56, leading to an SDC ind of 4.33 points and SDC group of 0.37 points. The SEM of GHQ-12 with bimodal scoring was 1.47, leading to an SDC ind of 4.06 points and SDC group of 0.35 points. The SEM of GHQ-12 with Likert scoring was 2.44, leading to an SDC ind of 6.76 points and SDC group of 0.58 points. To confirm that the change was not a result of measurement error, a score of self-reported outcome measurement scales would need to change by an amount greater than these SDC values. This has important implications for clinicians and epidemiologists when assessing outcomes. © 2017 John Wiley & Sons, Ltd.
The Cambridge Otology Quality of Life Questionnaire: an otology-specific patient-recorded outcome measure. A paper describing the instrument design and a report of preliminary reliability and validity.
Martin, T P C; Moualed, D; Paul, A; Ronan, N; Tysome, J R; Donnelly, N P; Cook, R; Axon, P R
The Cambridge Otology Quality of Life Questionnaire (COQOL) is a patient-recorded outcome measurement (PROM) designed to quantify the quality of life of patients attending otology clinics. Item-reduction model. A systematically designed long-form version (74 items) was tested with patient focus groups before being presented to adult otology patients (n. 137). Preliminary item analysis tested reliability, reducing the COQOL to 24 questions. This was then presented in conjunction with the SF-36 (V1) questionnaire to a total of 203 patients. Subsequently, these were re-presented at T + 3 months, and patients recorded whether they felt their condition had improved, deteriorated or remained the same. Non-responders were contacted by post. A correlation between COQOL scores and patient perception of change was examined to analyse content validity. Teaching hospital and university psychology department. Adult patients attending otology clinics with a wide range of otological conditions. Item reliability measured by item–total correlation, internal consistency and test– retest reliability. Validity measured by correlation between COQOL scores and patient-reported symptom change. Reliability: the COQOL showed excellent internal consistency at both initial presentation (a = 0.90) and 3 months later (a = 0.93). Validity: One-way analysis of variance showed a significant difference between groups reporting change and those reporting no change in quality of life (F(2, 80) = 5.866, P < 0.01). The COQOL is the first otology-specific PROM. Initial studies demonstrate excellent reliability and encouraging preliminary criterion validity: further studies will allow a deeper validation of the instrument.
Sørensen, Annette Balle; Kruse, Filip; Thøgersen, Jørn
DT/7-D4 is concerned with which types of communication within academic communities are essential viewed in respect of preservation. The central product is a presentation and an analysis of a questionnaire deployed to researchers at Aarhus University....
Identifying patient-centred recommendations for improving patient safety in General Practices in England: a qualitative content analysis of free-text responses using the Patient Reported Experiences and Outcomes of Safety in Primary Care (PREOS-PC) questionnaire.
Ricci-Cabello, Ignacio; Saletti-Cuesta, Lorena; Slight, Sarah P; Valderas, Jose M
There is a growing interest in identifying strategies to achieve safer primary health-care provision. However, most of the research conducted so far in this area relies on information supplied by health-care providers, and limited attention has been paid to patients' perspectives. To explore patients' experiences and perceptions of patient safety in English general practices with the aim of eliciting patient-centred recommendations for improving patient safety. The Patient Reported Experiences and Outcomes of Safety in Primary Care questionnaire was sent to a random sample of 6736 primary care users registered in 45 English practices. We conducted a qualitative content analysis of responses to seven open-ended items addressing patients' experiences of safety problems, lessons learnt as a result of such experiences and recommendations for safer health care. A total of 1244 (18.4%) participants returned completed questionnaires. Of those, 678 (54.5%) responded to at least one open-ended question. Two main themes emerged as follows: (i) experiences of safety problems and (ii) good practices and recommendations to improve patient safety in primary care. Most frequent experiences of safety problems were related to appointments, coordination between providers, tests, medication and diagnosis. Patients' responses to these problems included increased patient activation (eg speaking up about concerns with their health care) and avoidance of unnecessary health care. Recommendations for safer health care included improvements in patient-centred communication, continuity of care, timely appointments, technical quality of care, active monitoring, teamwork, health records and practice environment. This study identified a number of patient-centred recommendations for improving patient safety in English general practices. © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.
Full Text Available Dispositional self-awareness is conceptualized in several different ways, including insight, reflection, rumination and mindfulness, with the latter in particular attracting extensive attention in recent research. While self-awareness is generally associated with positive psychological well-being, these different conceptualizations are also each associated with a range of unique outcomes. This two part, mixed methods study aimed to advance understanding of dispositional self-awareness by developing a questionnaire to measure its outcomes. In Study 1, expert focus groups categorized and extended an initial pool of potential items from previous research. In Study 2, these items were reduced to a 38 item self-report questionnaire with four factors representing three beneficial outcomes (reflective self-development, acceptance and proactivity and one negative outcome (costs. Regression of these outcomes against self-awareness measures revealed that self-reflection and insight predicted beneficial outcomes, rumination predicted reduced benefits and increased costs, and mindfulness predicted both increased proactivity and costs. These studies help to refine the self-awareness concept by identifying the unique outcomes associated with the concepts of self-reflection, insight, reflection, rumination and mindfulness. It can be used in future studies to evaluate and develop awareness-raising techniques to maximize self-awareness benefits while minimizing related costs.
Rothaug, Judith; Zaslansky, Ruth; Schwenkglenks, Matthias; Komann, Marcus; Allvin, Renée; Backström, Ragnar; Brill, Silviu; Buchholz, Ingo; Engel, Christoph; Fletcher, Dominique; Fodor, Lucian; Funk, Peter; Gerbershagen, Hans J; Gordon, Debra B; Konrad, Christoph; Kopf, Andreas; Leykin, Yigal; Pogatzki-Zahn, Esther; Puig, Margarita; Rawal, Narinder; Taylor, Rod S; Ullrich, Kristin; Volk, Thomas; Yahiaoui-Doktor, Maryam; Meissner, Winfried
PAIN OUT is a European Commission-funded project aiming at improving postoperative pain management. It combines a registry that can be useful for quality improvement and research using treatment and patient-reported outcome measures. The core of the project is a patient questionnaire-the International Pain Outcomes questionnaire-that comprises key patient-level outcomes of postoperative pain management, including pain intensity, physical and emotional functional interference, side effects, and perceptions of care. Its psychometric quality after translation and adaptation to European patients is the subject of this validation study. The questionnaire was administered to 9,727 patients in 10 languages in 8 European countries and Israel. Construct validity was assessed using factor analysis. Discriminant validity assessment used Mann-Whitney U tests to detect mean group differences between 2 surgical disciplines. Internal consistency reliability was calculated as Cronbach's alpha. Factor analysis resulted in a 3-factor structure explaining 53.6% of variance. Cronbach's alpha at overall scale level was high (.86), and for the 3 subscales was low, moderate, or high (range, .53-.89). Significant mean group differences between general and orthopedic surgery patients confirmed discriminant validity. The psychometric quality of the International Pain Outcomes questionnaire can be regarded as satisfactory. The International Pain Outcomes questionnaire provides an instrument for postoperative pain assessment and improvement of quality of care, which demonstrated good psychometric quality when translated into a variety of languages in a large European and Israeli patient population. This measure provides the basis for the first comprehensive postoperative pain registry in Europe and other countries. Copyright © 2013. Published by Elsevier Inc.
Stoyanov, Slavi; Spoelstra, Howard; Burgoyne, Louise; O’Tuathaigh, Colm
Aim of the study The learning outcomes study, conducted as part of WP3 of the BioApp project, has as objectives: (a) generating a comprehensive list of the learning outcomes; (b) reaching an agreement on the scope and priority of the learning outcomes, and (c) making suggestions for the further
van Baar, M. E.; Essink-Bot, M. L.; Oen, I. M. M. H.; Dokter, J.; Boxma, H.; Hinson, M. I.; van Loey, N. E. E.; Faber, A. W.; van Beeck, E. F.
The Health Outcomes Burn Questionnaire (HOBQ) is a self-administered questionnaire to monitor outcome after burns in young children. This study aimed to assess feasibility, reliability and validity of the Dutch version of the HOBQ. The HOBQ was adapted into Dutch and tested in a population of
Niels C.L. Jacobs
Full Text Available The negative effects and the continuation of cyberbullying seem to depend on the coping strategies the victims use. To assess their coping strategies, self-report questionnaires (SRQs are used. However, these SRQs are often subject to several shortcomings: the (single and topological categorizations used in SRQs do not always adequately differentiate among various coping responses, in addition the strategies of general SRQs fail to accurately measure coping with cyberbullying. This study is therefore aimed to develop a SRQ that specifically measures coping with cyberbullying (i.e., Cyberbullying Coping Questionnaire; CCQ and to discover whether other, not single and topological, categorizations of coping strategies can be found. Based on previous SRQs used in the (cyberbullying (i.e., traditional and cyberbullying literature (i.e., 49 studies were found with three different SRQs measuring coping with traditional bullying, cyberbullying or (cyberbullying items and categorizations were selected, compared and merged into a new questionnaire. In compliance with recommendations from the classical test-theory, a principal component analysis and a confirmatory factor analysis were done, and a final model was constructed. Seventeen items loaded onto four different coping categorizations: mental-, passive-, social-, and confrontational-coping. The CCQ appeared to have good internal consistency, acceptable test-retest reliability, good discriminant validity and the development of the CCQ fulfilled many of the recommendations from classical test-theory. The CCQ omits working in single and topological categorizations and measures cognitive, behavioral, approach and avoidance strategies.
Juul, Tina; Søgaard, Karen; Roos, Ewa M.
removed from the original 69. A multidimensional questionnaire, divided into five subscales, was developed from the remaining 34 items: mobility; symptoms; sleep disturbance; everyday activity and pain; and participation in everyday life. Exploratory factor analysis supported a 5-subscale structure......OBJECTIVE: To develop a patient-reported outcome evaluating the impact of neck pain. The results of item generation and reduction and subscale structure in support of the content and construct validity of the measure are reported. METHODS: Items were generated from the literature and through focus...
Kim, L. H.; McLeod, R. S.; Kiss, Z. H. T.
Objective. There have been remarkable advances over the past decade in neural prostheses to restore lost motor function. However, restoration of somatosensory feedback, which is essential for fine motor control and user acceptance, has lagged behind. With an increasing interest in using electrical stimulation to restore somatosensory sensations within the peripheral (PNS) and central nervous systems (CNS), it is critical to characterize the percepts evoked by electrical stimulation in a standardized manner with a validated psychometric questionnaire. This will allow comparison of results from applications at various nervous system levels in multiple settings. Approach. We compiled a summary of published reports of somatosensory percepts that were elicited by electrical stimulation in humans and used these to develop a new psychometric questionnaire. Results. This new questionnaire was able to characterize subjective evoked sensations with good test-retest reliability (Spearman’s correlation coefficients ranging 0.716 ⩽ ρ ⩽ 1.000, p ⩽ 0.005) in 13 subjects receiving stimulation through neural implants in both the CNS and PNS. Furthermore, the new questionnaire captured more descriptors (M = 2.65, SD = 0.91) that would have been missed by being categorized as ‘other sensations’, using a previous questionnaire (M = 1.40, SD = 0.77, t(12) = -10.24, p psychometric questionnaire will aid in establishing consistency and standardization of reporting in future studies of somatosensory neural prostheses.
Johnson, Laurel L; Bradley, Susan J; Birkenfeld-Adams, Andrea S; Kuksis, Myra A Radzins; Maing, Dianne M; Mitchell, Janet N; Zucker, Kenneth J
This paper reports on the psychometric properties of a 16-item parent-report Gender Identity Questionnaire, originally developed by P. H. Elizabeth and R. Green (1984), to aid in the assessment of children with potential problems in their gender identity development. The questionnaire, which covered aspects of the core phenomenology of gender identity disorder (GID), was completed by parents of gender-referred children (N = 325) and controls (siblings, clinic-referred, and nonreferred; N = 504), who ranged in age from 2.5-12 years (mean age, 7.6 years). Factor-analysis indicated that a one-factor solution, containing 14 of the 16 items with factor loadings > or =.30, best fit the data, accounting for 43.7% of the variance. The gender-referred children had a significantly more deviant total score than did the controls, with a large effect size of 3.70. The GIQ total score had negligible age effects, indicating that the questionnaire has utility for assessing change over time. The gender-referred children who met the complete DSM criteria for GID had a significantly more deviant total score than did the children who were subthreshold for GID, although the latter group had a mean score that was closer to the threshold cases than to the controls. With a specificity rate set at 95% for the controls, the sensitivity rate for the probands was 86.8%. It is concluded that this parent-report gender identity questionnaire has excellent psychometric properties and can serve as a useful screening device for front-line clinicians, for whom more extensive, expensive, and time-consuming assessment procedures may be precluded.
ADENIYI AKINGBADE WAIDI
Full Text Available Questionnaire has to do with questions designed to gather information or data for analysis. Questionnaire has to be adequate, simple, focused and related to the subject which the research is set to achieve and to test the hypotheses and questions that are formulated for the study. But many questionnaires are constructed and administered without following proper guideline which hinders there end result. This paper assesses some of the guides for constructing questionnaire as well as it uses and the extent to which it enhanced manager’s access to reliable data and information. Descriptive method is employed for the study. Findings revealed that poor or badly prepared questionnaire produce questionnaire that does not provide effective results. Managers and researchers that use such questionnaire hardly achieve their organisational and research objectives. The need for good, well prepared and adequate questionnaire is exemplified by its being the primary tool for analytical research. The study recommends that questionnaire be properly prepared for effective research outcome.
Farnell, Damian J.J.; Mandall, Paula; Anandadas, Carmel; Routledge, Jaqueline; Burns, Meriel P.; Logue, John P.; Wylie, James P.; Swindell, Ric; Livsey, Jac; West, Catharine M.L.; Davidson, Susan E.
Purpose: To improve a questionnaire used to collect patient-reported outcomes from patients with early stage prostate cancer treated with brachytherapy. A secondary aim was to adapt the Late Effects of Normal Tissue (LENT) subjective toxicity questionnaire for use to collect Common Terminology Criteria for Adverse Events (CTCAE) data, the current preferred platform for assessing radiation toxicity. Materials and methods: Three hundred and seventy-seven patients were treated with permanent iodine-125 seed implant brachytherapy for early prostate cancer. Toxicity data were collected before and at nine time points post-treatment (0-36 months). Compliance rates for patients completing individual items and item-subsection correlation coefficients were calculated. A factor analysis was carried out to analyse responses to the questionnaire and identify less informative questions, which could be removed. Cronbach's α coefficient was used to measure reliability. Results: Two thousand one hundred and eighty-eight questionnaires were analysed. There was poor compliance for questions specifically relating to operations and bowel medication. We found that the division of the questionnaire into subsections based on anatomical site was reasonable and that certain items could be safely removed. The high mean value for Cronbach's α across all questionnaires (0.752; 95% CI: 0.726-0.779) indicated that the questionnaire was reliable. Fifteen of the 44 questions were removed from the original questionnaires. Questions on urinary incontinence severity, management of urinary and bowel incontinence, effects of reduced flow of urine and the effects of symptoms on activity of daily living and change in sexual function were required to adapt the LENT subjective questionnaire for use to collect CTCAE data. Conclusions: A questionnaire, validated over 6 years to collect LENT subjective data were adapted and is a reliable approach for collecting CTCAE data after prostate brachytherapy.
Dohi, Kenji; Aruga, Tohru; Abe, Toshiaki; Ogawa, Takeki; Onuma, Takehide; Katayama, Yoichi; Sakaki, Toshisuke; Shima, Katsuji; Hirakawa, Kimiyoshi
Intracranial hypotension (IH) is a rare condition caused by leakage of cerebrospinal fluid (CSF). Recently, a small number of clinicians have proposed a new concept about IH following minor head injury. They suggest that many of their patients with IH can be successfully treated with epidural blood patch therapy. They also argue that some patients with post-traumatic cervical syndrome and general fatigue syndrome suffer from IH following minor head injury. Consequently, IH following minor head injury was widely recognized and dealt with as a social problem in Japan. On the other hand, pathophysiological aspects of the condition as well as the provisional criteria to describe this clinical entity remain to be elucidated. In 2006, the Japan Society of Neurotraumatology performed a questionnaire survey asking 44 hospitals belonging to trustees of this society about IH following minor head injury. This paper provides a report of the outcomes of this survey. The response rate to this questionnaire was 57% (25/44). Fifty-six percent of respondents did not have experience of IH following minor head injury. Moreover, respondents' criteria for describing this disease differed greatly, especially in the radiological examinations and symptoms for the diagnosis of this entity which showed significant variation. These problems might originate from the general features of this disease. With the exception of postural headache, the symptoms of this disease varied enormously. This wide range of symptoms confused with the pathophysiolosies of a great many similar conditions. As such, clarifications of the pathophysiological characteristics of IH following minor head injury, together with consensus on specific criteria to describe the condition, are required. In conclusion, the results of this survey revealed many serious scientific and social problems associated with the diagnosis and treatment of intracranial hypotension following minor head injury. Scientific study including the
Bech, Per; Austin, Stephen Fitzgerald; Lau, Marianne Engelbrecht
INTRODUCTION: Patient-reported outcome measures (PROMs) for anxiety and depressive disorders are an important aspect of measurement-based care. AIM: The aim of the study was to perform a clinimetric analysis of two PROMs scales in patents with depression and anxiety. METHODS: Patients completed...... recruited from two Danish mental health centers with anxiety or depression. The standardization of the SCL-10 and WHO-5 by T-scores indicated that a T-score of 65 corresponding to being moderately in need of treatment and a T-score of 75 to be severely in need of treatment. The coefficient of alpha...... with anxiety or depression undergoing psychotherapy treatment....
The scales used were: the Short Mood and Feelings Questionnaire (SMFQ), Zung Self-rating Anxiety Scale (SAS), Self-esteem Questionnaire (SEQ), Harvard ... (HTQ) and Multi-Dimensional Scale of Perceived Social Support (MSPSS).
Rifbjerg-Madsen, Signe; Christensen, Anton Wulf; Boesen, Mikael
contrast-enhanced MRI (DCE-MRI) is performed. METHOD AND ANALYSIS: The painDETECT Questionnaire (PDQ), originally developed to screen for a neuropathic pain component, is applied to indicate the presence of central sensitisation. Adults diagnosed with RA are included when either (A) initiating disease......-inflammatory treatment, to explore the prognostic value of a screening questionnaire for central sensitisation, hand inflammation assessed by conventional MRI, and the interaction between them regarding treatment outcome evaluated by clinical status (DAS28-CRP). For the purpose of further exploratory analyses, dynamic...
Background Many patients with chronic illness are limited in their physical activities. This systematic review evaluates the content and format of patient-reported outcome (PRO) questionnaires that measure physical activity in elderly and chronically ill populations. Methods Questionnaires were identified by a systematic literature search of electronic databases (Medline, Embase, PsychINFO & CINAHL), hand searches (reference sections and PROQOLID database) and expert input. A qualitative analysis was conducted to assess the content and format of the questionnaires and a Venn diagram was produced to illustrate this. Each stage of the review process was conducted by at least two independent reviewers. Results 104 questionnaires fulfilled our criteria. From these, 182 physical activity domains and 1965 items were extracted. Initial qualitative analysis of the domains found 11 categories. Further synthesis of the domains found 4 broad categories: 'physical activity related to general activities and mobility', 'physical activity related to activities of daily living', 'physical activity related to work, social or leisure time activities', and '(disease-specific) symptoms related to physical activity'. The Venn diagram showed that no questionnaires covered all 4 categories and that the '(disease-specific) symptoms related to physical activity' category was often not combined with the other categories. Conclusions A large number of questionnaires with a broad range of physical activity content were identified. Although the content could be broadly organised, there was no consensus on the content and format of physical activity PRO questionnaires in elderly and chronically ill populations. Nevertheless, this systematic review will help investigators to select a physical activity PRO questionnaire that best serves their research question and context. PMID:22414164
Kako, Hiromi; Tripi, Jennifer; Walia, Hina; Tumin, Dmitry; Splaingard, Mark; Jatana, Kris R; Tobias, Joseph D; Raman, Vidya T
The prevalence of pediatric obstructive sleep apnea (OSA) has increased concurrently with the increasing prevalence of obesity. We have previously validated a short questionnaire predicting the occurrence of OSA on polysomnography (PSG). This follow-up study assessed the utility of the questionnaire in predicting postoperative outcomes. Children undergoing surgery and completing a sleep study were prospectively screened for OSA using a short questionnaire. Procedures within 1 year of PSG were included in the analysis. Questionnaires were scored according to a cutoff previously deemed optimal for predicting OSA (apnea-hypopnea index ≥ 5) on the sleep study. Postoperative outcomes included prolonged (>60 min) length of stay (LOS) in the post-anesthesia care unit (PACU) and oxygen requirement in the PACU. The study cohort included 185 patients (100/85 male/female) age 8 ± 4 years, undergoing adenotonsillectomy (n = 109), other ear, nose, and throat (ENT) procedures (n = 18), or non-ENT procedures (n = 58). There were 45 patients with OSA documented by PSG and 122 patients identified as likely to have OSA according to questionnaire responses (89% sensitivity, 41% specificity). PACU LOS was prolonged in 55/181 (30%) cases and supplemental oxygen was used in the PACU in 29/181 (16%) cases. In separate multivariable models, supplemental oxygen use in the PACU was more common if a patient scored ≥2/6 points on the short questionnaire scale (OR = 5.0; 95% CI: 1.3, 19.9; p = 0.023) or if the patient was diagnosed with OSA on PSG (OR = 4.6; 95% CI: 1.6, 13.5; p = 0.005). Neither OSA on PSG nor questionnaire score ≥2/6 were associated with prolonged PACU stay. Both OSA diagnosis based on the AHI and the questionnaire scale achieved comparable predictive value for the need for oxygen use in the PACU. The utility of the questionnaire in predicting rare adverse events (e.g., unplanned admission or rapid response team activation) remains to be determined
van Gelder, Marleen M H J; Vorstenbosch, Saskia; Derks, Lineke; Te Winkel, Bernke; van Puijenbroek, Eugène P; Roeleveld, Nel
The objective of this study was to validate a Web-based questionnaire completed by the mother to assess perinatal outcome used in a prospective cohort study. For 882 women with an estimated date of delivery between February 2012 and February 2015 who participated in the PRegnancy and Infant DEvelopment (PRIDE) Study, we compared data on pregnancy outcome, including mode of delivery, plurality, gestational age, birth weight and length, head circumference, birth defects, and infant sex, from Web-based questionnaires administered to the mothers 2 months after delivery with data from obstetric records. For continuous variables, we calculated intraclass correlation coefficients (ICCs) with 95% confidence intervals (CIs), whereas sensitivity and specificity were determined for categorical variables. We observed only very small differences between the two methods of data collection for gestational age (ICC, 0.91; 95% CI, 0.90-0.92), birth weight (ICC, 0.96; 95% CI, 0.95-0.96), birth length (ICC, 0.90; 95% CI, 0.87-0.92), and head circumference (ICC, 0.88; 95% CI, 0.80-0.93). Agreement between the Web-based questionnaire and obstetric records was high as well, with sensitivity ranging between 0.86 (termination of pregnancy) and 1.00 (four outcomes) and specificity between 0.96 (term birth) and 1.00 (nine outcomes). Our study provides evidence that Web-based questionnaires could be considered as a valid complementary or alternative method of data collection. Copyright © 2017 Elsevier Inc. All rights reserved.
Thompson, M G; Toews, J; Lundgren, J M
This report on the CPA Questionnaire on Continuing Education represents the answers of a sample of 485 of the 1,360 certified psychiatrists belonging to the Association. A total of 72.6% of the sample lived in urban centres with populations greater than 200,000; 28.9% worked in solo practice, but only 7.4% worked in settings where no other psychiatrists were present. The amount of time spent in continuing education activities was found to vary inversely with the distance that had to be travelled to major educational centres. Nevertheless, there were no psychiatrists that did not partake in some continuing education activities. Ninety-three percent read journals, 99% went to meetings, and 96% used consultation with other psychiatrists; 99% stated that these activities were useful. The favourite methods were reading and consultation. Eighty percent of the sample spent more than 41 hours per month in continuing education activities. Sixty-five percent stated that they would like a voluntary credit award system instituted. It is concluded that Canadian psychiatrists do spend a great deal of time in continuing education activities and believe that this is of value to their professional work.
Kotsuma, Yoshikazu; Endo, Tokiko; Iwase, Takuji
To maintain a sufficient number of qualified reading doctors for breast cancer mammography screening, we have held training courses across the nation. Grade-up examinations have been carried out for doctors who had failed to attain grade A or B at the training courses. We have evaluated the quality assurance of the examinations via questionnaires and reported the results on 7 previous occasions. In the present investigation, we reviewed all answers obtained from questionnaires at the previous 19 examinations, from the first one (November, 2000) until the last one (March, 2007). There were a total of 3,380 applicants, of whom 402 (11.9%) obtained grade A and 2,008 (59.4%) grade B. Thus a total 2,410 applicants (71.3%) obtained either A or B, and this rate was considerably superior to the 56% obtained in the first three examinations, although the former rate included the results of repeated applicants. These good results may have been due to an increase in the quality of the training courses and may have been affected by conducting the examinations not only in Nagoya but also in Tokyo and Osaka. In a period of about 10 months after April, 2004, the certification standard was increased and a system of certification reappraisal every 5 years was adopted. At that time, more than 75% of all applicants were A- or B-certified doctors at the 9th and 10th examinations, and the good results might have reflected the fact that many doctors tried hard to maintain a high reading ability. In February, 2005, the certification standard reverted to the previous one for various reasons, and the rate of A- or B-certified doctors decreased. In October, 2006, the examination changed from 100 questions concerning one-direction mammography to 50 one-direction questions and 50 two-direction questions, because of the adoption of two-direction mammography to age 40 years. Since it was widely recognized that the second reading at breast cancer screening should be done by A-certified doctors
Velikova, Galina; Valderas, Jose M.; Potter, Caroline; Batchelder, Laurie; A’Court, Christine; Baker, Matthew; Bostock, Jennifer; Coulter, Angela; Fitzpatrick, Ray; Forder, Julien; Fox, Diane; Geneen, Louise; Gibbons, Elizabeth; Jenkinson, Crispin; Jones, Karen; Kelly, Laura; Peters, Michele; Mulhern, Brendan; Labeit, Alexander; Rowen, Donna; Meadows, Keith; Elliott, Jackie; Brazier, John E.; Knowles, Emma; Keetharuth, Anju; Brazier, John E.; Connell, Janice; Carlton, Jill; Buck, Lizzie Taylor; Ricketts, Thomas; Barkham, Michael; Goswami, Pushpendra; Salek, Sam; Ionova, Tatyana; Oliva, Esther; Fielding, Adele K.; Karakantza, Marina; Al-Ismail, Saad; Collins, Graham P.; McConnell, Stewart; Langton, Catherine; Jennings, Daniel M.; Else, Roger; Kell, Jonathan; Ward, Helen; Day, Sophie; Lumley, Elizabeth; Phillips, Patrick; Duncan, Rosie; Buckley-Woods, Helen; Aber, Ahmed; Jones, Gerogina; Michaels, Jonathan; Porter, Ian; Gangannagaripalli, Jaheeda; Davey, Antoinette; Ricci-Cabello, Ignacio; Haywood, Kirstie; Hansen, Stine Thestrup; Valderas, Jose; Roberts, Deb; Gumber, Anil; Podmore, Bélène; Hutchings, Andrew; van der Meulen, Jan; Aggarwal, Ajay; Konan, Sujith; Price, Andrew; Jackson, William; Bottomley, Nick; Philiips, Michael; Knightley-Day, Toby; Beard, David; Gibbons, Elizabeth; Fitzpatrick, Ray; Greenhalgh, Joanne; Gooding, Kate; Gibbons, Elizabeth; Valderas, Chema; Wright, Judy; Dalkin, Sonia; Meads, David; Black, Nick; Fawkes, Carol; Froud, Robert; Carnes, Dawn; Price, Andrew; Cook, Jonathan; Dakin, Helen; Smith, James; Kang, Sujin; Beard, David; Griffiths, Catrin; Guest, Ella; Harcourt, Diana; Murphy, Mairead; Hollinghurst, Sandra; Salisbury, Chris; Carlton, Jill; Elliott, Jackie; Rowen, Donna; Gao, Anqi; Price, Andrew; Beard, David; Lemanska, Agnieszka; Chen, Tao; Dearnaley, David P.; Jena, Rajesh; Sydes, Matthew; Faithfull, Sara; Ades, A. E.; Kounali, Daphne; Lu, Guobing; Rombach, Ines; Gray, Alastair; Jenkinson, Crispin; Rivero-Arias, Oliver; Holch, Patricia; Holmes, Marie; Rodgers, Zoe; Dickinson, Sarah; Clayton, Beverly; Davidson, Susan; Routledge, Jacqui; Glennon, Julia; Henry, Ann M.; Franks, Kevin; Velikova, Galina; Maguire, Roma; McCann, Lisa; Young, Teresa; Armes, Jo; Harris, Jenny; Miaskowski, Christine; Kotronoulas, Grigorios; Miller, Morven; Ream, Emma; Patiraki, Elizabeth; Geiger, Alexander; Berg, Geir V.; Flowerday, Adrian; Donnan, Peter; McCrone, Paul; Apostolidis, Kathi; Fox, Patricia; Furlong, Eileen; Kearney, Nora; Gibbons, Chris; Fischer, Felix; Gibbons, Chris; Coste, Joel; Martinez, Jose Valderas; Rose, Matthias; Leplege, Alain; Shingler, Sarah; Aldhouse, Natalie; Al-Zubeidi, Tamara; Trigg, Andrew; Kitchen, Helen; Davey, Antoinette; Porter, Ian; Green, Colin; Valderas, Jose M.; Coast, Joanna; Smith, Sarah; Hendriks, Jolijn; Black, Nick; Shah, Koonal; Rivero-Arias, Oliver; Ramos-Goni, Juan-Manuel; Kreimeier, Simone; Herdman, Mike; Devlin, Nancy; Finch, Aureliano Paolo; Brazier, John E.; Mukuria, Clara; Zamora, Bernarda; Parkin, David; Feng, Yan; Bateman, Andrew; Herdman, Mike; Devlin, Nancy; Patton, Thomas; Gutacker, Nils; Shah, Koonal
The proceedings contain 36 papers. The topics discussed include: using patient reported outcome measures (PROMs) in cancer care; validation of the long-term conditions questionnaire (LTCQ) in a diverse sample of health and social care users in England; the national institutes of health
Nishizuka, Takanobu; Iwatsuki, Katsuyuki; Kurimoto, Shigeru; Yamamoto, Michiro; Onishi, Tetsuro; Hirata, Hitoshi
The aim of our study was to compare the responsiveness of the Hand10 questionnaire and the Pain visual analogue scale (VAS) for the assessment of lateral epicondylitis. The standardized response mean and effect size were used as indicators of responsiveness, measured at baseline and after 6 months of treatment. Among the 54 patients enrolled, 28 were treated using a forearm band, compress and stretching, with the other 26 patients treated using compress and stretching. The standardized response mean and the effect size were 1.18 and 1.38, respectively, of the Hand10 and 1.39 and 1.75, respectively, for the Pain VAS. The responsiveness of both tests was considered to be large, based on Cohen's classification of effect size, supporting the use of the Hand10 questionnaire to assess treatment outcomes for lateral epicondylitis.
Ebrahimzadeh, Mohammad H; Birjandinejad, Ali; Kachooei, Amir Reza
We aimed to validate a cross-culturally adapted version of the Persian Michigan Hand Outcomes Questionnaire (MHOQ). We followed the Beaton's guideline to translate the questionnaire to Persian. We administered the final version to 223 patients among which 79 patients returned 3 days later to respond to the Persian MHOQ for the second time. In the first visit, respondents also filled the Disabilities of the Arm Shoulder and Hand (DASH) and rated the pain based on the Visual Analogue Scale (VAS). Cronbach's alpha for the total MHOQ was 0.79 which showed good internal consistency. Intraclass correlation coefficient (ICC) for the total MHOQ was 0.84 which demonstrated good reliability between test and retest. The absolute correlation coefficient between total MHOQ and the DASH was as high as 0.74. Persian version of the MHOQ proved to be a reliable and valid instrument to be implemented among Persian population with the hand and wrist disorders.
Meehan, Merrill L.; Cowley, Kimberly S.; Craig, James R.; Balow, Nancy; Childers, Robert D.
The Continuous School Improvement Questionnaire (CSIQ) developed by the AEL helps a school staff gauge its performance on six dimensions related to continuous school improvement. Each member of the staff responds to the CSIQ individually. Although results might be used at the district or regional level, the most widely intended unit for applying…
Schulte-van Maaren, Yvonne W M; Giltay, Erik J; van Hemert, Albert M; Zitman, Frans G; de Waal, Margot W M; Carlier, Ingrid V E
The monitoring of patients with an anxiety disorder can benefit from Routine Outcome Monitoring (ROM). As anxiety disorders differ in phenomenology, several anxiety questionnaires are included in ROM: Brief Scale for Anxiety (BSA), PADUA Inventory Revised (PI-R), Panic Appraisal Inventory (PAI), Penn State Worry Questionnaire (PSWQ), Worry Domains Questionnaire (WDQ), Social Interaction, Anxiety Scale (SIAS), Social Phobia Scale (SPS), and the Impact of Event Scale-Revised (IES-R). We aimed to generate reference values for both 'healthy' and 'clinically anxious' populations for these anxiety questionnaires. We included 1295 subjects from the general population (ROM reference-group) and 5066 psychiatric outpatients diagnosed with a specific anxiety disorder (ROM patient-group). The MINI was used as diagnostic device in both the ROM reference group and the ROM patient group. To define limits for one-sided reference intervals (95th percentile; P95) the outermost 5% of observations were used. Receiver Operating Characteristics (ROC) analyses were used to yield alternative cut-off values for the anxiety questionnaires. For the ROM reference-group the mean age was 40.3 years (SD=12.6), and for the ROM patient-group it was 36.5 years (SD=11.9). Females constituted 62.8% of the reference-group and 64.4% of the patient-group. P95 ROM reference group cut-off values for reference versus clinically anxious populations were 11 for the BSA, 43 for the PI-R, 37 for the PAI Anticipated Panic, 47 for the PAI Perceived Consequences, 65 for the PAI Perceived Self-efficacy, 66 for the PSWQ, 74 for the WDQ, 32 for the SIAS, 19 for the SPS, and 36 for IES-R. ROC analyses yielded slightly lower reference values. The discriminative power of all eight anxiety questionnaires was very high. Substantial non-response and limited generalizability. For eight anxiety questionnaires a comprehensive set of reference values was provided. Reference values were generally higher in women than in men
Sawyer, Adam R; Robinson, Stephen; Cadier, Michael
To evaluate patient satisfaction and quality of life following secondary cleft rhinoplasty. Prospective consecutive patient, single unit, single surgeon study. Spires Cleft Centre, Salisbury, Wilshire, United Kingdom, and private practice. 56 (27 secondary cleft rhinoplasty) patients completed evaluation forms preoperatively and 3 to 6 months postoperatively. Subjective assessment was performed using a validated Rhinoplasty Outcomes Evaluation (ROE) questionnaire. This instrument comprises six questions that capture three quality-of-life domains: physical, mental/emotional, and social. Rhinoplasty outcomes evaluation scores were calculated (range = 0 to 100) to indication satisfaction with rhinoplasty outcomes. Average age was 28 years (range = 18 to 59 years). There was a significant subjective improvement in the total ROE evaluation scores from 28 ± 10 to 80 ± 11 (P aesthetic appearance improved from 0.3 ± 0.2 to 3.2 ± 0.3 (P < .01) in secondary cleft rhinoplasty. No significant change was seen in breathing capacity in secondary cleft rhinoplasty (from 2.7 ± 0.3 to 3.2 ± 0.2; P = .29). All patients said they would undergo the procedure again. Our results demonstrate high patient satisfaction after cleft rhinoplasty with particular regard to cosmetic appearance. These results are similar to those for noncleft rhinoplasty. We would recommend the use of this simple and quick validated outcome tool with all rhinoplasty patients.
Hasler, Gregor; Hopwood, Christopher J.; Jacob, Gitta A.; Brändle, Laura S.; Schulte-Vels, Thomas
Patient-reported outcome (PRO) refers to measures that emphasize the subjective view of patients about their health-related conditions and behaviors. Typically, PROs include self-report questionnaires and clinical interviews. Defining PROs for borderline personality disorder (BPD) is particularly challenging given the disorder's high symptomatic heterogeneity, high comorbidity with other psychiatric conditions, highly fluctuating symptoms, weak correlations between symptoms and functional outcomes, and lack of valid and reliable experimental measures to complement self-report data. Here, we provide an overview of currently used BPD outcome measures and discuss them from clinical, psychometric, experimental, and patient perspectives. In addition, we review the most promising leads to improve BPD PROs, including the DSM-5 Section III, the Recovery Approach, Ecological Momentary Assessments, and novel experimental measures of social functioning that are associated with functional and social outcomes. PMID:25152662
van der Maas, Nico Arie
The Multiple Sclerosis Questionnaire for Physical Therapists (MSQPT) is a patient-rated outcome questionnaire for evaluating the rehabilitation of persons with multiple sclerosis (MS). Responsiveness was evaluated, and minimal important difference (MID) estimates were calculated to provide thresholds for clinical change for four items, three sections and the total score of the MSQPT. This multicentre study used a combined distribution- and anchor-based approach with multiple anchors and multiple rating of change questions. Responsiveness was evaluated using effect size, standardized response mean (SRM), modified SRM and relative efficiency. For distribution-based MID estimates, 0.2 and 0.33 standard deviations (SD), standard error of measurement (SEM) and minimal detectable change were used . Triangulation of anchor- and distribution-based MID estimates provided a range of MID values for each of the four items, the three sections and the total score of the MSQPT. The MID values were tested for their sensitivity and specificity for amelioration and deterioration for each of the four items, the three sections and the total score of the MSQPT. The MID values of each item and section and of the total score with the best sensitivity and specificity were selected as thresholds for clinical change. The outcome measures were the MSQPT, Hamburg Quality of Life Questionnaire for Multiple Sclerosis (HAQUAMS), rating of change questionnaires, Expanded Disability Status Scale, 6-metre timed walking test, Berg Balance Scale and 6-minute walking test. The effect size ranged from 0.46 to 1.49. The SRM data showed comparable results. The modified SRM ranged from 0.00 to 0.60. Anchor-based MID estimates were very low and were comparable with SD- and SEM-based estimates. The MSQPT was more responsive than the HAQUAMS in detecting improvement but less responsive in finding deterioration. The best MID estimates of the items, sections and total score, expressed in percentage of their
Full Text Available Objective: Cultural adaptations of the questionnaires are important for easy use. We aimed to assess the reliability and validity of the Turkish Version of the Michigan Hand Outcomes Questionnaire in patients with Carpal Tunnel Syndrome. Methods: To assess test-retest reliability, the Turkish âMichigan Hand Outcomes Questionnaireâ and âDisabilities of Arm, Shoulder and Handâ questionnaires were answered by patients and controls and were repeated a week later. For testing internal consistency, the Cronbach's alpha test was used. For testing validity, correlations between the subscales of the âMichigan Hand Outcomes Questionnaireâ and âDisabilities of Arm, Shoulder and Handâ questionnaire were measured in patient groups. One hundred patients with idiopathic Carpal Tunnel Syndrome and 50 healthy participants were included in the study. Results: In test-retest reliability, intraclass correlations of the subscales of the âMichigan Hand Outcomes Questionnaireâ were high. Cronbach's alphas were found to be high in all subscales. There was no significant correlation between asthetics and pain scales. We found significant differences between patients and controls regarding all subscales of the âMichigan Hand Outcomes Questionnaireâ. Correlations between subscales of the âMichigan Hand Outcomes Questionnaireâ and âDisabilities of Arm, Shoulder and Handâ questionnaire were significant. We found no difference between one-hand effected and two-hand effected patients, in terms of the âMichigan Hand Outcomes Questionnaireâ, âDisabilities of Arm, Shoulder and Handâ questionnaire Function/Symptom and Work average scores. Conclusion: This study showed that the Turkish version of the âMichigan Hand Outcomes Questionnaireâ is reliable and valid and can be used in Turkish patients with Carpal Tunnel Syndrome because it is comprehensible and practicable
Giulio Sergio Roi
Full Text Available The knee is the weight-bearing joint most commonly associated with sports injuries, and therefore is most at risk of developing degenerative changes, including osteoarthritis. Skyrunners can be considered to be at risk of developing symptoms of post-traumatic osteoarthritis due to downhill running.The aim of this study was to analyze the health of the knee joints of a large group of these athletes via a specific self-report questionnaire.This study was carried out by asking the participants of seven official Skyraces (22.4±3.1 km length; 1596±393 m elevation to fill out a questionnaire. Information regarding age, sex, downhill elevation (m during training and competitions over the last month, and history of previous knee injury was also collected before the participants filled out the Knee injury and Osteoarthritis Outcome Score (KOOS, which is a reliable and validated instrument designed to assess patients' opinions about their knees and associated problems that can result in post-traumatic osteoarthritis. Athletes were divided into six age groups (from 17 to 70 years and 12 groups based on the downhill gradient they had covered over the last month (from 1,000 to 40,000 m.Six hundred twenty-one questionnaires were collected from 45% of the participants in the seven races. Multivariate analysis revealed that self-reported KOOS scores were unrelated to age, sex and monthly downhill gradient. Only 74 (12% of the participants reported previous knee injuries. Significant differences in the five subscales of the KOOS were found between skyrunners with and without previous knee injuries (P<0.01.In the studied population, regular training for downhill running and participation in Skyraces could not be considered risk factors for subjective knee symptoms. Skyrunners with self-reported histories of knee injuries scored worse on all five subscales of the KOOS.
Nylin Henry BO
Full Text Available Abstract Background Questionnaires are used in research and clinical practice. For gastrointestinal complaints the Rome II questionnaire is internationally known but not validated. The aim of this study was to validate a printed and a computerized version of Rome II, translated into Swedish. Results from various analyses are reported. Methods Volunteers from a population based colonoscopy study were included (n = 1011, together with patients seeking general practice (n = 45 and patients visiting a gastrointestinal specialists' clinic (n = 67. The questionnaire consists of 38 questions concerning gastrointestinal symptoms and complaints. Diagnoses are made after a special code. Our validation included analyses of the translation, feasibility, predictability, reproducibility and reliability. Kappa values and overall agreement were measured. The factor structures were confirmed using a principal component analysis and Cronbach's alpha was used to test the internal consistency. Results and Discussion Translation and back translation showed good agreement. The questionnaire was easy to understand and use. The reproducibility test showed kappa values of 0.60 for GERS, 0.52 for FD, and 0.47 for IBS. Kappa values and overall agreement for the predictability when the diagnoses by the questionnaire were compared to the diagnoses by the clinician were 0.26 and 90% for GERS, 0.18 and 85% for FD, and 0.49 and 86% for IBS. Corresponding figures for the agreement between the printed and the digital version were 0.50 and 92% for GERS, 0.64 and 95% for FD, and 0.76 and 95% for IBS. Cronbach's alpha coefficient for GERS was 0.75 with a span per item of 0.71 to 0.76. For FD the figures were 0.68 and 0.54 to 0.70 and for IBS 0.61 and 0.56 to 0.66. The Rome II questionnaire has never been thoroughly validated before even if diagnoses made by the Rome criteria have been compared to diagnoses made in clinical practice. Conclusion The accuracy of the Swedish version of
Elliott, Robert; Wagner, John; Sales, Célia M D; Rodgers, Brian; Alves, Paula; Café, Maria J
We present a range of evidence for the reliability and validity of data generated by the Personal Questionnaire (PQ), a client-generated individualized outcome measure, using 5 data sets from 3 countries. Overall pretherapy mean internal consistency (alpha) across clients was .80, and within-client alphas averaged .77; clients typically had 1 or 2 items that did not vary with the other items. Analyses of temporal structure indicated high levels of between-clients variance (58%), moderate pretherapy test-retest correlation (r = .57), and high session-to-session Lag-1 autocorrelation (.82). Scores on the PQ provided clear evidence of convergence with a range of outcome measures (within-client r = .41). Mean pre-post effects were large (d = 1.25). The results support a revised caseness cutoff of 3.25 and a reliable change index interval of 1.67. We conclude that PQ data meet criteria for evidence-based, norm-referenced measurement of client psychological distress for supporting psychotherapy practice and research. (c) 2016 APA, all rights reserved).
Machado, Paulo P P; Fassnacht, Daniel B
The Outcome Questionnaire (OQ-45) is one of the most extensively used standardized self-report instruments to monitor psychotherapy outcomes. The questionnaire is designed specifically for the assessment of change during psychotherapy treatments. Therefore, it is crucial to provide norms and clinical cut-off values for clinicians and researchers. The current study aims at providing study provides norms, reliability indices, and clinical cut-off values for the Portuguese version of the scale. Data from two large non-clinical samples (high school/university, N = 1,669; community, N = 879) and one clinical sample (n = 201) were used to investigate psychometric properties and derive normative data for all OQ-45 subscales and the total score. Significant and substantial differences were found for all subscales between the clinical and non-clinical sample. The Portuguese version also showed adequate reliabilities (internal consistency, test-retest), which were comparable to the original version. To assess individual clinical change, clinical cut-off values and reliable change indices were calculated allowing clinicians and researchers to monitor and evaluate clients' individual change. The Portuguese version of the OQ-45 is a reliable instrument with comparable Portuguese norms and cut-off scores to those from the original version. This allows clinicians and researchers to use this instrument for evaluating change and outcome in psychotherapy. This study provides norms for non-clinical and clinical Portuguese samples and investigates the reliability (internal consistency and test-retest) of the OQ-45. Cut-off values and reliable change index are provided allowing clinicians to evaluate clinical change and clients' response to treatment, monitoring the quality of mental health care services. These can be used, in routine clinical practice, as benchmarks for treatment progress and to empirically base clinical decisions such as continuation of treatment or considering
Full Text Available Roy Fox1, Tara Sampalli1, Jonathan Fox11Nova Scotia Environmental Health Centre, Fall River, NS, CanadaAbstract: The Nova Scotia Environmental Health Centre is a treatment facility for individuals with chronic environmental conditions such as multiple chemical sensitivity, chronic fatigue syndrome, fibromyalgia, chronic respiratory conditions and in some cases chronic pain. The premise of care is to provide a patient-centred multidisciplinary care approach leading to self-management strategies. In order to measure the outcome of the treatment in these complex problems, with overlapping diagnoses, symptoms in many body systems and suspected environmental triggers, a detailed symptoms questionnaire was developed specifically for this patient population and validated. Results from a pilot study in which an abbreviated symptoms questionnaire based on the top reported symptoms captured in previous research was used to measure the efficacy of a multidisciplinary care approach in individuals with multiple chemical sensitivity are presented in this paper. The purpose of this study was to examine the extent, type and patterns of changes over time in the top reported symptoms with treatment measured using the abbreviated symptoms questionnaire. A total of 183 active and 109 discharged patients participated in the study where the health status was measured at different time periods of follow up since the commencement of treatment at the Centre. The findings from this study were successful in generating an initial picture of the nature and type of changes in these symptoms. For instance, symptoms such as difficulty concentrating, sinus conditions and tiredness showed early improvement, within the first 6 months of being in treatment, while others, such as fatigue, hoarseness or loss of voice, took longer while others showed inconsistent changes warranting further enquiry. A controlled longitudinal study is planned to confirm the findings of the pilot study
Langhaug, Lisa F; Sherr, Lorraine; Cowan, Frances M
To systematically review comparative research from developing countries on the effects of questionnaire delivery mode. We searched Medline, EMbase and PsychINFO and ISSTDR conference proceedings. Randomized control trials and quasi-experimental studies were included if they compared two or more questionnaire delivery modes, were conducted in a developing country, reported on sexual behaviours and occurred after 1980. A total of 28 articles reporting on 26 studies met the inclusion criteria. Heterogeneity of reported trial outcomes between studies made it inappropriate to combine trial outcomes. Eighteen studies compared audio computer-assisted survey instruments (ACASI) or its derivatives [personal digital assistant (PDA) or computer-assisted personal interview (CAPI)] against another self-administered questionnaires, face-to-face interviews or random response technique. Despite wide variation in geography and populations sampled, there was strong evidence that computer-assisted interviews lowered item-response rates and raised rates of reporting sensitive behaviours. ACASI also improved data entry quality. A wide range of sexual behaviours were reported including vaginal, oral, anal and/or forced sex, age of sexual debut, condom use at first and/or last sex. Validation of self-reports using biomarkers was rare. These data reaffirm that questionnaire delivery modes do affect self-reported sexual behaviours and that use of ACASI can significantly reduce reporting bias. Its acceptability and feasibility in developing country settings should encourage researchers to consider its use when conducting sexual health research. Triangulation of self-reported data using biomarkers is recommended. Standardizing sexual behaviour measures would allow for meta-analysis.
Powell, J; Powell, S; Robson, A
Recently, there has been increased emphasis on the development and application of patient-reported outcome measures. This drive to assess the impact of illness or interventions, from the patient's perspective, has resulted in a greater number of available questionnaires. The importance of selecting an appropriate patient-reported outcome measure is specifically emphasised in the paediatric population. The literature on patient-reported outcome measures used in paediatric otolaryngology was reviewed. A comprehensive literature search was conducted using the databases Medline, Embase, Cumulative Index to Nursing and Allied Health Literature, and PsycInfo, using the terms: 'health assessment questionnaire', 'structured questionnaire', 'questionnaire', 'patient reported outcome measures', 'PROM', 'quality of life' or 'survey', and 'children' or 'otolaryngology'. The search was limited to English-language articles published between 1996 and 2016. The search yielded 656 articles, of which 63 were considered relevant. This included general paediatric patient-reported outcome measures applied to otolaryngology, and paediatric otolaryngology disease-specific patient-reported outcome measures. A large collection of patient-reported outcome measures are described in the paediatric otolaryngology literature. Greater standardisation of the patient-reported outcome measures used in paediatric otolaryngology would assist in pooling of data and increase the validation of tools used.
Dawson, Jill; Coffey, Jane; Doll, Helen; Lavis, Grahame; Cooke, Paul; Herron, Mark; Jenkinson, Crispin
A patient-based outcome measure with good measurement properties is urgently needed for use in clinical trials of foot surgery. We evaluated an existing foot pain and disability questionnaire (the Manchester Foot Pain and Disability Questionnaire) for its suitability as an outcome measure in the context of hallux valgus corrective surgery. Interviews with patients led to initial changes, resulting in 20 candidate questionnaire items with five response categories each. These were tested in a prospective study of 100 patients (representing 138 foot operations) undergoing hallux valgus corrective surgery. Analysis of underlying factor structure, dimensionality, internal reliability, construct validity and responsiveness of the questionnaire items in relation to (i) SF-36 general health survey and (ii) American Orthopaedic Foot & Ankle Society (AOFAS) hallux clinical scale resulted in a final 16 item questionnaire (the 'Manchester-Oxford Foot Questionnaire' (MOXFQ)), consisting of three domains/scales: 'Walking/standing' (seven items), 'Pain' (five items) and 'Social interaction' (four items) each having good measurement properties. All three domains were unidimensional. The new 16-item MOXFQ has good measurement properties in the context of outcomes assessment of surgery for hallux valgus. Future studies should assess the MOXFQ in the context of surgery for other foot and ankle conditions.
Wulterkens, Leonie; Aurégan, Jean-Charles; Letellier, Thomas; Mebtouche, Nasser; Levante, Stéphane; Cottin, Philippe; Bégué, Thierry
Post-traumatic limb salvage surgery is challenging and evaluation of the results remains arduous. No questionnaire specifically assessing functional outcome after post-traumatic limb salvage surgery of the lower extremity exists. Due to regionalization of specialized care, the patients' travel time to the hospital increases. To overcome a higher patients' travel burden, patients' follow up by telephone is an option. We aimed to develop a telephone questionnaire in order to assess functional outcome after post-traumatic limb salvage surgery of the lower extremity. From a review of scores of functional assessment of the lower limb surgery, we have developed a telephone questionnaire. A prospective study was performed to validate this telephone questionnaire. Twenty patients were included. The participants were called to complete the telephone questionnaire twice with an interval of a week. The Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) was completed during the second telephone call. The internal consistency was analyzed by the Cronbach's alpha (α). With the outcome scores of both completions, the test-retest reliability was analyzed by the interclass correlation coefficient (ICC) 2,k with a 95% confidence interval (95% CI). The outcome scores of the second telephone questionnaire and the WOMAC questionnaire were used for the construct validity analysis by the Spearman's rank correlation coefficient (r(s)) with a 95% CI. The internal consistency analysis revealed a α=0.62 which improved to α=0.92 after removing one question from the telephone questionnaire. The final version of the telephone questionnaire comprises 32 questions, divided in 3 subscales: function, daily life and psychology. The total score varies between 0 and 86 points. The test-retest reliability was ICC 2,k=0.93 (95% CI: 0.82-0.97) and the construct validity was r(s)=0.92 (95% CI: 0.81-0.97). We present a specific telephone questionnaire in order to assess functional
Lee, Eun-Hyun; Kim, Chun-Ja; Kim, Eun Jung; Chae, Hyun-Ju; Cho, Soo-Yeon
The purpose of this study was to evaluate measurement properties of self-report questionnaires for studies published in Korean nursing journals. Of 424 Korean nursing articles initially identified, 168 articles met the inclusion criteria. The methodological quality of the measurements used in the studies and interpretability were assessed using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist. It consists of items on internal consistency, reliability, measurement error, content validity, construct validity including structural validity, hypothesis testing, cross-cultural validity, and criterion validity, and responsiveness. For each item of the COSMIN checklist, measurement properties are rated on a four-point scale: excellent, good, fair, and poor. Each measurement property is scored with worst score counts. All articles used the classical test theory for measurement properties. Internal consistency (72.6%), construct validity (56.5%), and content validity (38.2%) were most frequently reported properties being rated as 'excellent' by COSMIN checklist, whereas other measurement properties were rarely reported. A systematic review of measurement properties including interpretability of most instruments warrants further research and nursing-focused checklists assessing measurement properties should be developed to facilitate intervention outcomes across Korean studies.
Pilgrim, A L; Baylis, D; Jameson, K A; Cooper, C; Sayer, A A; Robinson, S M; Roberts, H C
Poor appetite is commonly reported by older people but is rarely measured. The Simplified Nutritional Appetite Questionnaire (SNAQ) was validated to predict weight loss in community dwelling older adults but has been little used in hospitals. We evaluated it in older women on admission to hospital and examined associations with healthcare outcomes. Longitudinal observational with follow-up at six months. Female acute Medicine for Older People wards at a University hospital in England. 179 female inpatients. Age, weight, Body Mass Index (BMI), grip strength, SNAQ, Barthel Index Score, Mini Mental State Examination (MMSE), Geriatric Depression Scale: Short Form (GDS-SF), Malnutrition Universal Screening Tool (MUST), category of domicile and receipt of care were measured soon after admission and repeated at six month follow-up. The length of hospital stay (LOS), hospital acquired infection, readmissions and deaths by follow-up were recorded. 179 female participants mean age 87 (SD 4.7) years were recruited. 42% of participants had a low SNAQ score (appetite). A low SNAQ score was associated with an increased risk of hospital acquired infection (OR 3.53; 95% CI: 1.48, 8.41; p=0.004) and with risk of death (HR 2.29; 95% CI: 1.12, 4.68; p = 0.023) by follow-up. Poor appetite was common among the older hospitalised women studied, and was associated with higher risk of poor healthcare outcomes.
This report describes the pilot data collections and post-questionnaire interview activities of the Council on Library Resources (CLR)/Online Computer Library Center (OCLC) Online Public Access Project. The background of the project is briefly described, the purpose and adminstration of the post-questionnaire interviews are outlined, and pilot…
Gutman, Gabriel; Joncas, Julie; Mac-Thiong, Jean-Marc; Beauséjour, Marie; Roy-Beaudry, Marjolaine; Labelle, Hubert; Parent, Stefan
Prospective validation of the Scoliosis Research Society Outcomes Questionnaire French-Canadian version (SRS-22fv) in adolescent patients with spondylolisthesis. To determine the measurement properties of the SRS-22fv. The SRS-22 is widely used for the assessment of health-related quality of life in adolescent idiopathic scoliosis (AIS) and other spinal deformities. Spondylolisthesis has an important effect on quality of life. The instrument was previously used in this population, although its measurement properties remained unknown. We aim to determine its reliability, factorial, concurrent validity, and its discriminant capacity in an adolescent spondylolisthesis population. The SRS-22fv was tested in 479 subjects (272 patients with spondylolisthesis, 143 with AIS, and 64 controls) at a single institution. Its reliability was measured using the coefficient of internal consistency, concurrent validity by the short form-12 (SF-12v2 French version) and discriminant validity using multivariate analysis of variance, analysis of covariance, and multivariate linear regression. The SRS-22fv showed a good global internal consistency (spondylolisthesis: Cronbach α = 0.91, AIS: 0.86, and controls: 0.78) in all its domains for spondylolisthesis patients. It showed a factorial structure consistent with the original questionnaire, with 60% of explained variance under four factors. Moderate to high correlation coefficients were found for specifically corresponding domains between SRS-22fv and SF-12v2. Boys had higher scores than do girls, scores worsened with increasing age and body mass index. Analysis of covariance showed statistically significant differences between patients with spondylolisthesis, patients with AIS, and controls when controlling for age, sex, body mass index, pain, function, and self-image scores. In the spondylolisthesis group, scores on all domains and mean total scores were significantly lower in surgical candidates and in patients with high
Moolenburgh, S E; Mureau, M A M; Duivenvoorden, H J; Hofer, S O P
In determining patient satisfaction with functional and aesthetic outcome after reconstructive surgery, including nasal reconstruction, standardised assessment instruments are very important. These standardised tools are needed to adequately evaluate and compare outcome results. Since no such instrument existed for nasal reconstruction, a standardised evaluation questionnaire was developed to assess aesthetic and functional outcome after nasal reconstruction. Items of the Nasal Appearance and Function Evaluation Questionnaire (NAFEQ) were derived from both the literature and experiences with patients. The NAFEQ was validated on 30 nasal reconstruction patients and a reference group of 175 people. A factor analysis confirmed the arrangement of the questionnaire in two subscales: functional and aesthetic outcome. High Cronbach's alpha values (>0.70) for both subscales showed that the NAFEQ was an internally consistent instrument. This study demonstrated that the NAFEQ can be used as a standardised questionnaire for detailed evaluation of aesthetic and functional outcome after nasal reconstruction. Its widespread use would enable comparison of results achieved by different techniques, surgeons and centres in a standardised fashion.
Assumpção, Ana; Pagano, Tatiana; Matsutani, Luciana A; Ferreira, Elizabeth A G; Pereira, Carlos A B; Marques, Amélia P
Fibromyalgia is a painful syndrome characterized by widespread chronic pain and associated symptoms with a negative impact on quality of life. Considering the subjectivity of quality of life measurements, the aim of this study was to verify the discriminating power of two quality of life questionnaires in patients with fibromyalgia: the generic Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36) and the specific Fibromyalgia Impact Questionnaire (FIQ). A cross-sectional study was conducted on 150 participants divided into Fibromyalgia Group (FG) and Control Group (CG) (n=75 in each group). The participants were evaluated using the SF-36 and the FIQ. The data were analyzed by the Student t-test (α=0.05) and inferential analysis using the Receiver Operating Characteristics (ROC) Curve--sensitivity, specificity and area under the curve (AUC). The significance level was 0.05. The sample was similar for age (CG: 47.8 ± 8.1; FG: 47.0 ± 7.7 years). A significant difference was observed in quality of life assessment in all aspects of both questionnaires (pquality of life in fibromyalgia patients, and we suggest that both should be used in parallel because they evaluate relevant and complementary aspects of quality of life.
Toupin April, Karine; Higgins, Johanne; Ehrmann Feldman, Debbie
Adherence to treatment in children with juvenile idiopathic arthritis (JIA) is associated with better outcomes. Assessing patient adherence in JIA, as well as attitudes and beliefs about prescribed treatments, is important for the clinician in order to optimize patient management. The objective of the current study was to evaluate the psychometric properties of the Parent (proxy-report) Adherence Report Questionnaires (PARQ), which assesses beliefs and behaviors related to adherence to treatments prescribed for JIA. A Rasch analysis was conducted on data collected with parents of children with JIA from two studies in which the PARQ was used as a measure of adherence. The PARQ showed preliminary evidence of multidimensionality with two factors, accounting for 38 % and 27 % of the variance respectively. The PARQ in its original version does not adhere to expectations of the Rasch model. A transformed version of the PARQ obtained by deletion of the general adherence scale and modification of visual analog scales into 5-point likert scales improved fit to the model and showed preliminary evidence of unidimensionality. The PARQ was transformed based on the results of the Rasch analysis. The transformed version of the PARQ shows preliminary evidence of unidimensionality and may allow computation of a total score, although further testing is needed to verify these findings.
To review the advantages and disadvantages of e-questionnaires, and question whether or not reported disadvantages remain valid or can be limited or circumvented. The internet is likely to become the dominant medium for survey distribution, yet nurses and midwives have been slow to use online technology for research involving questionnaires. Relatively little is known about optimal methods of harnessing the internet's potential in health studies. A small e-questionnaire of health workers. The Medline and Maternity and Infant Care databases were searched for articles containing the words 'web', 'online', or 'internet' and 'survey' or 'questionnaire'. The search was restricted to articles in English published since 2000. The reference lists of retrieved articles were also searched. Reported disadvantages of online data collection, such as sample bias, psychometric distortions, 'technophobia' and lower response rates are discussed and challenged. The author reports her experience of conducting a survey with an e-questionnaire to contribute to the limited body of knowledge in this area, and suggests how to maximise the quantity and quality of responses to e-questionnaires. E-questionnaires offer the researcher an inexpensive, quick and convenient way to collect data. Many of the reported disadvantages of the medium are no longer valid. The science of conducting the perfect e-survey is emerging. However, the lessons learned in the author's study, together with other research, seem to suggest that satisfactory response rates and data quality can be achieved in a relatively short time if certain tactics are used. To get the best results from e-questionnaires, it is suggested that the questionnaire recipients should be targeted carefully and that the value of their potential contribution to the project should be emphasised. E-questionnaires should be convenient, quick and easy to access, and be set out in a way that encourages full and complete responses.
Millen, Amy E.; Tooze, Janet A.; Subar, Amy F.; Kahle, Lisa L.; Schatzkin, Arthur; Krebs-Smith, Susan M.
Background Low-energy reporters (LERs) and non-LERs differ with respect to a number of characteristics, including self-reported intake of foods. Limited data exists investigating food intake differences with LERs identified using doubly labeled water (DLW). Objective In the Observing Protein and Energy Nutrition Study (September, 1999-March, 2000), differences were examined between food group reports of LERs and non-LERs on a food frequency questionnaire (FFQ) (n=440). Design LERs were identified using DLW. LERs' (n=220) and non-LERs' (n=220) reports of 43 food groups on the FFQ were examined in three ways: whether they reported consuming a food group (yes/no), how frequently they reported consuming it (times/day), and the reported portion size (small, medium, or large). Analyses were adjusted for total energy expenditure from DLW. Results LERs compared to non-LERs were less likely to report consumption for one food group among women (soft drinks/regular) and no food groups among men. Reported mean daily frequency of consumption was lower in LERs compared to non-LERs for 23 food groups among women and 24 food groups among men (18 food groups were similar in men and women). Additionally, reported mean portion sizes were smaller for LERs compared to non-LERs for 6 food groups among women and 5 food groups among men (3 food groups were similar in men and women). Results varied minimally by sex and body mass index (BMI). Conclusions LERs as compared to non-LERs were more likely to differ regarding their reported frequency of consumption of food groups than their reported consumption (yes/no) of the food groups or the food groups' reported portion sizes. Results did not vary greatly by sex or BMI. It still remains to be known whether improvement in questionnaire design or additional tools or methods would lead to a decrease in differential reporting due to LER status on an FFQ. PMID:19559136
Smets, E.M.A.; Pieterse, A.H.; Aalfs, C.M.; Ausems, M.G.E.M.; Dulmen, A.M. van
The perceived personal control (PPC) questionnaire was developed by Berkenstadt and colleagues as an outcome measure for the evaluation of the process of genetic counseling. The present study aimed to further assess the psychometric properties of a Dutch version of the instrument. Data were used
Alonso Fachado, A; Montes Martinez, A; Menendez Villalva, C; Pereira, M Graça
The aim of this study was the assesment of psychometric properties of the Portuguese version of the instrument "Medical Outcomes Study - Social Support Survey (MOSSSS)". This questionnaire has been translated and adapted in a Portuguese sample of 101 patients with chronic illness of a rural health centre in Portugal. The average age of patients was 63.4 years, 56.4% female. 29% were illiterate and 2% had completed high school. 78% had arterial hypertension and the 56.4% had diabetes mellitus type 2. The internal consistency was evaluated using Cronbach's alpha. Exploratory and Confirmatory factor analysis were performed in order to confirm reliability and validity of the scale and its multidimensional characteristics. The 2-week test-retest reliability was estimated using weighted kappa for the ordinals variables and intraclass coefficient correlation for the quantitative variables. Cronbach's alphas for the subscales ranged from 0.873 to 0.967 at test, and 0.862 to 0.972 at retest. Exploratory factor analysis revealed the existence of four factors (emotional, tangible, positive interaction and affection support) that explain the 72.71% of the variance. Confirmatory factor analysis supported the existence of four factors that allowed the application of the scale with original items. The goodness-of-fit measures corroborate the initial structure, with chi2/ df=2.01, GFI=0.998, CFI=0.999, AGFI=0.998, TLI=0.999, NFI=0.998, SRMR=0.332, RMSEA=0.76. The 2-weeks test-retest reliability of the Portuguese MOS-SSS as measured by the intraclass correlation coefficient was ranged from 0.941 to 0.966 for the four dimensions and the overall support index. The weighted kappa was ranged from 0.67 to 0.87 for all the items. The MOS-SSS Portuguese version demonstrates good psychometric properties and seems to be useful to measure multidimensional aspects of social support in the Portuguese population.
Ostenfeld-Rosenthal, Ann; Johannessen, Helle
as rehabilitation after colorectal cancer, a sub-sample of 31 participants completed the MYCaW questionnaire and the priority list and were interviewed before, during and after the treatment period. Setting Treatments were provided in healers’ clinics in Denmark. Main outcome measures For each participant......Objectives To compare the capacity of the MYCaW questionnaire, a priority list of concerns covered by validated questionnaires, and semi-structured interviews to identify patients’ personalized concerns and related changes. Design In a pragmatic trial on the effectiveness of energy healing...... experience with the treatment, while concerns stated in interviews and the priority list remained stable throughout the study; (2) emotional concerns were reported more often in interviews than in MYCaW, physical concerns were predominant in MYCaW, and quality of life was marked as a primary concern most...
Aazh, Hashir; Moore, Brian C J
The objective was to determine the relevance and applicability of psychological questionnaires to patients seeking help for tinnitus and/or hyperacusis. This was a questionnaire-based survey. The following questionnaires were administered: Generalised Anxiety Disorder (GAD-7), Short Health Anxiety Inventory (SHAI), Mini-Social Phobia Inventory (Mini-SPIN), Obsessive Compulsive Inventory-Revised (OCI-R), Panic Disorder Severity Scale-Self Report (PDSS-SR), Patient Health Questionnaire (PHQ-9) and Penn State Worry Questionnaire-Abbreviated version (PSWQ-A). In addition, a patient feedback questionnaire was completed asking about the extent to which each questionnaire was relevant to them and how strongly they would recommend its use in the assessment of patients with tinnitus and hyperacusis. A total of 150/402 consecutive patients seen in a one-year period completed the questionnaires. 65% of patients had abnormal scores for one or more of the questionnaires. All questionnaires except the PDSS-SR were rated as relevant and recommended for use. The GAD-7, SHAI, Mini-SPIN, OCI-R, PSWQ-A and PHQ-9 are recommended for evaluation of psychological problems for patients seeking help for tinnitus and/or hyperacusis. Abnormal results on these questionnaires may indicate the need for referral for possible treatment of psychological problems.
Bölenius, Karin; Brulin, Christine; Grankvist, Kjell; Lindkvist, Marie; Söderberg, Johan
Venous blood sampling is a common procedure in health care. It is strictly regulated by national and international guidelines. Deviations from guidelines due to human mistakes can cause patient harm. Validated questionnaires for health care personnel can be used to assess preventable "near misses"--i.e. potential errors and nonconformities during venous blood sampling practices that could transform into adverse events. However, no validated questionnaire that assesses nonconformities in venous blood sampling has previously been presented. The aim was to test a recently developed questionnaire in self reported venous blood sampling practices for validity and reliability. We developed a questionnaire to assess deviations from best practices during venous blood sampling. The questionnaire contained questions about patient identification, test request management, test tube labeling, test tube handling, information search procedures and frequencies of error reporting. For content validity, the questionnaire was confirmed by experts on questionnaires and venous blood sampling. For reliability, test-retest statistics were used on the questionnaire answered twice. The final venous blood sampling questionnaire included 19 questions out of which 9 had in total 34 underlying items. It was found to have content validity. The test-retest analysis demonstrated that the items were generally stable. In total, 82% of the items fulfilled the reliability acceptance criteria. The questionnaire could be used for assessment of "near miss" practices that could jeopardize patient safety and gives several benefits instead of assessing rare adverse events only. The higher frequencies of "near miss" practices allows for quantitative analysis of the effect of corrective interventions and to benchmark preanalytical quality not only at the laboratory/hospital level but also at the health care unit/hospital ward.
Full Text Available Abstract Background Venous blood sampling is a common procedure in health care. It is strictly regulated by national and international guidelines. Deviations from guidelines due to human mistakes can cause patient harm. Validated questionnaires for health care personnel can be used to assess preventable "near misses"--i.e. potential errors and nonconformities during venous blood sampling practices that could transform into adverse events. However, no validated questionnaire that assesses nonconformities in venous blood sampling has previously been presented. The aim was to test a recently developed questionnaire in self reported venous blood sampling practices for validity and reliability. Findings We developed a questionnaire to assess deviations from best practices during venous blood sampling. The questionnaire contained questions about patient identification, test request management, test tube labeling, test tube handling, information search procedures and frequencies of error reporting. For content validity, the questionnaire was confirmed by experts on questionnaires and venous blood sampling. For reliability, test-retest statistics were used on the questionnaire answered twice. The final venous blood sampling questionnaire included 19 questions out of which 9 had in total 34 underlying items. It was found to have content validity. The test-retest analysis demonstrated that the items were generally stable. In total, 82% of the items fulfilled the reliability acceptance criteria. Conclusions The questionnaire could be used for assessment of "near miss" practices that could jeopardize patient safety and gives several benefits instead of assessing rare adverse events only. The higher frequencies of "near miss" practices allows for quantitative analysis of the effect of corrective interventions and to benchmark preanalytical quality not only at the laboratory/hospital level but also at the health care unit/hospital ward.
Lacroix, Emilie; Alberga, Angela; Russell-Mathew, Shelly; McLaren, Lindsay; von Ranson, Kristin
People living with overweight and obesity often experience weight-based stigmatization. Investigations of the prevalence and correlates of weight bias and evaluation of weight bias reduction interventions depend upon psychometrically-sound measurement. Our paper is the first to comprehensively evaluate the psychometric properties, use of people-first language within items, and suitability for use with various populations of available self-report measures of weight bias. We searched five electronic databases to identify English-language self-report questionnaires of weight bias. We rated each questionnaire's psychometric properties based on initial validation reports and subsequent use, and examined item language. Our systematic review identified 40 original self-report questionnaires. Most questionnaires were brief, demonstrated adequate internal consistency, and tapped key cognitive and affective dimensions of weight bias such as stereotypes and blaming. Current psychometric evidence is incomplete for many questionnaires, particularly with regard to the properties of test-retest reliability, sensitivity to change as well as discriminant and structural validity. Most questionnaires were developed prior to debate surrounding terminology preferences, and do not employ people-first language in the items administered to participants. We provide information and recommendations for clinicians and researchers in selecting psychometrically sound measures of weight bias for various purposes and populations, and discuss future directions to improve measurement of this construct. © 2017 The Author(s) Published by S. Karger GmbH, Freiburg.
Tran, M G B; Yip, J; Uveili, K; Biers, S M; Thiruchelvam, N
Patient reported outcome measures (PROMs) were used to evaluate outcomes of the artificial urinary sphincter (AUS) and the AdVance™ (American Medical Systems, Minnetonka, MN, US) male sling system (AVMS) for the symptomatic management of male stress urinary incontinence. All male patients with stress urinary incontinence referred to our specialist clinic over a two-year period completed the ICIQ-UI SF (International Consultation on Incontinence Questionnaire on Urinary Incontinence Short Form) and the ICIQ-MLUTS LF (International Consultation on Incontinence Questionnaire on Male Lower Urinary Tract Symptoms Long Form) at consultation as well as at subsequent follow-up appointments. The Wilcoxon signed-rank test for non-parametric paired data was used for pre and postoperative comparisons. The chi-squared test was used for categorical variables. Thirty-seven patients (forty surgical cases) completed a preoperative and at least one follow-up questionnaire. There was a statistically significant improvement in PROMs postoperatively, regardless of mode of surgery (p25) had greater improvement with an AUS than with the AVMS (p<0.01). This prospective study shows that completion and collection of PROMs as part of routine clinical practice is achievable and useful in the assessment of male stress incontinence surgery. PROMs are important instruments to assess effectiveness of healthcare intervention and they are useful adjuncts in surgical studies.
Ashmore, Alexander M; Gozzard, Charles; Blewitt, Neil
The Liverpool Elbow Score (LES) is a newly developed, validated elbow-specific score. It consists of a patient-answered questionnaire (PAQ) and a clinical assessment. The purpose of this study was to determine whether the PAQ portion of the LES could be used independently as a postal questionnaire for the assessment of outcome after total elbow arthroplasty and to correlate the LES and the Mayo Elbow Performance Score (MEPS). A series of 51 total elbow replacements were reviewed by postal questionnaire. Patients then attended the clinic for assessment by use of both the LES and the MEPS. There was an excellent response rate to the postal questionnaire (98%), and 44 elbows were available for clinical review. Good correlation was shown between the LES and the MEPS (Spearman correlation coefficient, 0.84; P PAQ portion of the LES and the MEPS (Spearman correlation coefficient, 0.76; P PAQ component and the MEPS, suggesting that outcome assessment is possible by postal questionnaire.
Terluin, B.; van Marwijk, H.W.J.; Ader, H.J.; de Vet, H.C.W.; Penninx, B.W.J.H.; Hermens, M.L.M.; van Boeijen, C.A.; van Balkom, A.J.L.M.; van der Klink, J.J.L.; Stalman, W.A.B.
Background: The Four-Dimensional Symptom Questionnaire (4DSQ) is a self-report questionnaire that has been developed in primary care to distinguish non-specific general distress from depression, anxiety and somatization. The purpose of this paper is to evaluate its criterion and construct validity.
de Vries, Sieta T; Haaijer-Ruskamp, Flora M; de Zeeuw, Dick; Denig, Petra
PURPOSE: To assess the validity of a patient-reported adverse drug events (ADEs) questionnaire with a 3-month or 4-week recall period. METHODS: Patients receiving at least one oral glucose-lowering drug were asked to report potential ADEs they experienced related to any drug in a daily diary for a
Mekhora, Keerin; Jalayondeja, Wattana; Jalayondeja, Chutima; Bhuanantanondh, Petcharatana; Dusadiisariyavong, Asadang; Upiriyasakul, Rujiret; Anuraktam, Khajornyod
To develop an online, self-report questionnaire on computer work-related exposure (OSCWE) and to determine the internal consistency, face and content validity of the questionnaire. The online, self-report questionnaire was developed to determine the risk factors related to musculoskeletal disorders in computer users. It comprised five domains: personal, work-related, work environment, physical health and psychosocial factors. The questionnaire's content was validated by an occupational medical doctor and three physical therapy lecturers involved in ergonomic teaching. Twenty-five lay people examined the feasibility of computer-administered and the user-friendly language. The item correlation in each domain was analyzed by the internal consistency (Cronbach's alpha; alpha). The content of the questionnaire was considered congruent with the testing purposes. Eight hundred and thirty-five computer users at the PTT Exploration and Production Public Company Limited registered to the online self-report questionnaire. The internal consistency of the five domains was: personal (alpha = 0.58), work-related (alpha = 0.348), work environment (alpha = 0.72), physical health (alpha = 0.68) and psychosocial factor (alpha = 0.93). The findings suggested that the OSCWE had acceptable internal consistency for work environment and psychosocial factors. The OSCWE is available to use in population-based survey research among computer office workers.
Full Text Available Hearing loss is a potential late effect after childhood cancer. Questionnaires are often used to assess hearing in large cohorts of childhood cancer survivors and it is important to know if they can provide valid measures of hearing loss. We therefore assessed agreement and validity of questionnaire-reported hearing in childhood cancer survivors using medical records as reference.In this validation study, we studied 361 survivors of childhood cancer from the Swiss Childhood Cancer Survivor Study (SCCSS who had been diagnosed after 1989 and had been exposed to ototoxic cancer treatment. Questionnaire-reported hearing was compared to the information in medical records. Hearing loss was defined as ≥ grade 1 according to the SIOP Boston Ototoxicity Scale. We assessed agreement and validity of questionnaire-reported hearing overall and stratified by questionnaire respondents (survivor or parent, sociodemographic characteristics, time between follow-up and questionnaire and severity of hearing loss.Questionnaire reports agreed with medical records in 85% of respondents (kappa 0.62, normal hearing was correctly assessed in 92% of those with normal hearing (n = 249, and hearing loss was correctly assessed in 69% of those with hearing loss (n = 112. Sensitivity of the questionnaires was 92%, 74%, and 39% for assessment of severe, moderate and mild bilateral hearing loss; and 50%, 33% and 10% for severe, moderate and mild unilateral hearing loss, respectively. Results did not differ by sociodemographic characteristics of the respondents, and survivor- and parent-reports were equally valid.Questionnaires are a useful tool to assess hearing in large cohorts of childhood cancer survivors, but underestimate mild and unilateral hearing loss. Further research should investigate whether the addition of questions with higher sensitivity for mild degrees of hearing loss could improve the results.
Scheinemann, Katrin; Grotzer, Michael; Kompis, Martin; Kuehni, Claudia E.
Background Hearing loss is a potential late effect after childhood cancer. Questionnaires are often used to assess hearing in large cohorts of childhood cancer survivors and it is important to know if they can provide valid measures of hearing loss. We therefore assessed agreement and validity of questionnaire-reported hearing in childhood cancer survivors using medical records as reference. Procedure In this validation study, we studied 361 survivors of childhood cancer from the Swiss Childhood Cancer Survivor Study (SCCSS) who had been diagnosed after 1989 and had been exposed to ototoxic cancer treatment. Questionnaire-reported hearing was compared to the information in medical records. Hearing loss was defined as ≥ grade 1 according to the SIOP Boston Ototoxicity Scale. We assessed agreement and validity of questionnaire-reported hearing overall and stratified by questionnaire respondents (survivor or parent), sociodemographic characteristics, time between follow-up and questionnaire and severity of hearing loss. Results Questionnaire reports agreed with medical records in 85% of respondents (kappa 0.62), normal hearing was correctly assessed in 92% of those with normal hearing (n = 249), and hearing loss was correctly assessed in 69% of those with hearing loss (n = 112). Sensitivity of the questionnaires was 92%, 74%, and 39% for assessment of severe, moderate and mild bilateral hearing loss; and 50%, 33% and 10% for severe, moderate and mild unilateral hearing loss, respectively. Results did not differ by sociodemographic characteristics of the respondents, and survivor- and parent-reports were equally valid. Conclusions Questionnaires are a useful tool to assess hearing in large cohorts of childhood cancer survivors, but underestimate mild and unilateral hearing loss. Further research should investigate whether the addition of questions with higher sensitivity for mild degrees of hearing loss could improve the results. PMID:28333999
Full Text Available Table of contents S1 Using computerized adaptive testing Tim Croudace S2 Well-being: what is it, how does it compare to health and what are the implications of using it to inform health policy John Brazier O1 “Am I going to get better?”—Using PROMs to inform patients about the likely benefit of surgery Nils Gutacker, Andrew Street O2 Identifying Patient Reported Outcome Measures for an electronic Personal Health Record Dan Robotham, Samantha Waterman, Diana Rose, Safarina Satkunanathan, Til Wykes O3 Examining the change process over time qualitatively: transformative learning and response shift Nasrin Nasr, Pamela Enderby O4 Developing a PROM to evaluate self-management in diabetes (HASMID: giving patients a voice Jill Carlton, Donna Rowen, Jackie Elliott, John Brazier, Katherine Stevens, Hasan Basarir, Alex Labeit O5 Development of the Primary Care Outcomes Questionnaire (PCOQ Mairead Murphy, Sandra Hollinghurst, Chris Salisbury O6 Developing the PKEX score- a multimodal assessment tool for patients with shoulder problems Dominic Marley, James Wilson, Amy Barrat, Bibhas Roy O7 Applying multiple imputation to multi-item patient reported outcome measures: advantages and disadvantages of imputing at the item, sub-scale or score level Ines Rombach, Órlaith Burke, Crispin Jenkinson, Alastair Gray, Oliver Rivero-Arias O8 Integrating Patient Reported Outcome Measures (PROMs into routine primary care for patients with multimorbidity: a feasibility study Ian Porter, Jaheeda Gangannagaripalli, Charlotte Bramwell, Jose M. Valderas O9 eRAPID: electronic self-report and management of adverse-events for pelvic radiotherapy (RT patients Patricia Holch, Susan Davidson, Jacki Routledge, Ann Henry, Kevin Franks, Alex Gilbert, Kate Absolom & Galina Velikova O10 Patient reported outcomes (PROMs based recommendation in clinical guidance for the management of chronic conditions in the United Kingdom Ian Porter, Jose M.Valderas O11 Cross-sectional and
Mikkelsen, S.; Vilstrup, Imogen; Lassen, C. F.
OBJECTIVE: To examine the validity and potential biases in self-reports of computer, mouse and keyboard usage times, compared with objective recordings. METHODS: A study population of 1211 people was asked in a questionnaire to estimate the average time they had worked with computer, mouse...... and keyboard during the past four working weeks. During the same period, a software program recorded these activities objectively. The study was part of a one-year follow-up study from 2000-1 of musculoskeletal outcomes among Danish computer workers. RESULTS: Self-reports on computer, mouse and keyboard usage...... times were positively associated with objectively measured activity, but the validity was low. Self-reports explained only between a quarter and a third of the variance of objectively measured activity, and were even lower for one measure (keyboard time). Self-reports overestimated usage times...
Tiffany, Jeanne; Tollefson, Nona
This study field tests and evaluates the Parenting Questionnaire, an instrument designed to assess parental attitudes and behavior, based on the child-raising theories of Dreikurs and Dinkmeyer and the Adlerian model for parent study groups. Dreikurs and Adler stress the purposive nature of children's behavior or misbehavior, and teach parents to…
Yang, Ming; Ding, Xiang; Dong, Birong
To analyze the contents and formats of general self-reported questionnaires on disability that are designed for and/or are widely applied in the elderly population to depict a complete picture of this field and help researchers to choose proper tools more efficiently. A broad systematic literature search was performed in September 2013 and included the following databases: MEDLINE, EMBASE, CINAHL, PsycINFO, and PROQOLID. The publication language was limited to English and Chinese. Two review authors independently performed the study selection and data extraction. All of the included instruments were extracted and classified using the International Classification of Functioning, Disability, and Health framework. Of 5569 articles retrieved from the searches and 156 articles retrieved from the pearling, 22 studies (including 24 questionnaires) fulfilled the inclusion criteria. From these, 42 different domains and 458 items were extracted. The most frequently used questionnaire was the Barthel Index followed by the Lawton and Brody Instrumental Activities of Daily Living Scale and the Katz Index of Activities of Daily Living, respectively. The contents and formats of the questionnaires varied considerably. Activities and participation were the most commonly assessed dimensions. In addition, the Activities of Daily Living, mobility and the Instrumental Activities of Daily Living Scale were the most common domains assessed among the included questionnaires. Among the 24 included questionnaires, the most frequently used questionnaires were the Barthel Index, Lawton and Brody Instrumental Activities of Daily Living Scale, and Katz Index of Activities of Daily Living. The content and format of the questionnaires varied considerably, but none of the questionnaires covered all essential dimensions of the International Classification of Functioning, Disability, and Health framework. Copyright © 2014 American Medical Directors Association, Inc. Published by Elsevier Inc. All
Chiga, Sakura; Ohba, Takashi; Tanoue, Daisuke; Kawase, Hiromi; Katoh, Takahiko; Katabuchi, Hidetaka
As part of the Kumamoto RAINBOW Project, a multifaceted implementation of the prevention of premature labor, we investigated pregnant women's oral health status and assessed the validity of a self-reported periodontal disease questionnaire. We examined the oral health status of pregnant women and asked them for subjective descriptions of symptoms of periodontitis both in the first and the second half of their pregnancy in Kumamoto Prefecture from August 2012 to January 2014. The Community Periodontal Index (CPI) was used to assess the periodontal condition, and women having periodontal pockets with depths of ≥4 mm were catecogorized as having periodontitis. The results were the scores of the self-questionnaire for periodontal disease prepared by the Japan Dental Association. Of the 9,527 pregnant women who received periodontal check- ups during the first half of pregnancy, 32 percent were diagnosed as having periodontitis. The self-questionnaire had a sensitivity of 51.2% and a specificity of 62.9% for pregnant women to predict their periodontal disease. Then, we evaluated the importance of each question by logistic regression analysis and extracted the useful items. An increased sensitivity (79.9%) was obtained with the best of the modified questionnaire. To our knowledge, this is the first report of the evaluation of the usefulness of the self-reported periodontal disease questionnaire for pregnant women. The current self-questonnaire used for the general adult population was less sensitive for pregnant women. Our modified questionnaire showed an improved sensitivity for diagnosing periodontitis, but its specificity remained low. A specialized self-questionnaire for periodontal disease in pregnant women should be designed.
van Baar, Margriet E.; Essink-Bot, Marie-Louise; Oen, Irma M. M. H.; Dokter, Jan; Boxma, Han; Hinson, Michelle I.; van Loey, Nancy E. E.; Faber, Albertus W.; van Beeck, Ed F.
The American Burn Association/Shriners Hospital for Children Burn Outcomes Questionnaire (BOQ) is a self-administered questionnaire to monitor functional outcome after burns in children and adolescents. This study aimed to assess feasibility, reliability, and validity of the Dutch BOQ. The BOQ was
Beauséjour, Marie; Joncas, Julie; Goulet, Lise; Roy-Beaudry, Marjolaine; Parent, Stefan; Grimard, Guy; Forcier, Martin; Lauriault, Sophie; Labelle, Hubert
Prospective validation study of a cross-cultural adaptation of the Scoliosis Research Society (SRS) Outcomes Questionnaire. To provide a French Canadian version of the SRS Outcomes Questionnaire and to empirically test its response in healthy adolescents and adolescent idiopathic scoliosis (AIS) patients in Québec. The SRS Outcomes Questionnaire is widely used for the assessment of health-related quality of life in AIS patients. French translation and back-translation of the SRS-22 (SRS-22-fv) were done by an expert committee. Its reliability was measured using the coefficient of internal consistency, construct validity with a factorial analysis, concurrent validity by using the short form-12 and discriminant validity using ANOVA and multivariate linear regression, on 145 AIS patients, 44 patients with non clinically significant scoliosis (NCSS), and 64 healthy patients. The SRS-22-fv showed a good global internal consistency (AIS: Cronbach alpha = 0.86, NCSS: 0.81, and controls: 0.79) and in all of its domains for AIS patients. The factorial structure was coherent with the original questionnaire (47.4% of explained variance). High correlation coefficients were obtained between SRS-22-fv and short form-12 corresponding domains. Boys had higher scores than girls, scores worsened with age, and with increasing body mass index. Mean Total, Pain, Self-image, and Satisfaction scores, were correlated with Cobb angle. Adjusted regression models showed statistically significant differences between the AIS, NCSS, and control groups in the Total, Pain, and Function scores. The SRS-22-fv showed satisfactory reliability, factorial, concurrent, and discriminant validity. This study provides scores in a significant group of healthy adolescents and demonstrates a clear gradient in response between subjects with AIS, NCSS, and controls.
Oberaigner, Willi; Leitner, Hermann; Oberaigner, Karin; Marth, Christian; Pinzger, Gerald; Concin, Hans; Steiner, Horst; Hofmann, Hannes; Wagner, Teresa; Mörtl, Manfred; Ramoni, Angela
Immigration plays a major role in obstetrics in Austria, and about 18 % of the Austrian population are immigrants. Therefore, we aimed to (1) test the feasibility of a proposed questionnaire for assessment of migrant status in epidemiological research and (2) assess some important associations between procedures and outcomes in obstetrics and migration in selected departments in Austria. We adapted a standardized questionnaire to the main immigration groups in Austria. Information on country of origin, length of residence in Austria and German-language ability was collected from eight selected obstetrics departments. Of the 1,971 questionnaires, 1,873 questionnaires of singleton births were selected and included in the analysis. We analyzed a total of 1,873 parturients with singleton births, of which 35 % had migrant status, 12 % were from ex-Yugoslavia, 12 % were from Turkey, and 12 % were from other countries. The proportion of parturients having their first care visit after the 12th week of pregnancy was higher in migrant groups (19 %). Smoking was highest in the migrants from ex-Yugoslavia (21 %). Vaginal delivery was more frequent in migrants from ex-Yugoslavia (78 %) and Turkey (83 %) than in nonmigrants (71 %) and episiotomy was more frequently performed in migrants from other countries. All differences are statistically significant. Administration of a standardized questionnaire for assessment of migrant status in obstetric departments in Austria was shown to be feasible. We assessed differences in obstetric care and outcome and consequently recommend that action should be initiated in Austria toward harmonizing obstetric procedures among the migrant and the nonmigrant groups and toward minimizing risk factors.
de Vries, Sieta T.; Mol, Peter G. M.; de Zeeuw, Dick; Haaijer-Ruskamp, Flora M.; Denig, Petra
Background Direct patient reporting of adverse drug events (ADEs) is relevant for the evaluation of drug safety. To collect such data in clinical trials and postmarketing studies, a valid questionnaire is needed that can measure all possible ADEs experienced by patients. Objective Our aim was to
Huitink, C.; Embregts, P.J.C.M.; Veerman, J.W.; Verhoeven, L.T.W.
The purpose of the present study was to examine psychometric properties of the Staff Behavior toward Clients questionnaire (SBC), a self-report measure for care staff working with children and adolescents with mild to borderline intellectual disabilities in residential care. Ninetynine care staff
van der Meer, M.; Dixon, A.; Rose, D.
Background and objectives This study examined the level of agreement between parents and children on the Strengths and Difficulties Questionnaire (SDQ) in a clinical sample in Sydney, Australia. Methods Parent and child SDQ reports were collected from 379 parents-child pairs. Children were aged
Kan, C.C.; Ven, A.H.G.S. van der; Breteler, M.H.M.; Zitman, F.G.
The aim of the present study was to obtain standardized scores that correspond with the raw scores on the four Rasch scales of the Benzodiazepine Dependence-Self Report Questionnaire (Bendep-SRQ). The eligible normative group for standardization of the Bendep-SRQ scales consisted of 217 general
Kan, C.C.; Ven, A.H.G.S. van der; Breteler, M.H.M.; Zitman, F.G.
The aim of the present study was to obtain standardized scores that correspond with the raw scores on the four Rasch scales of the Benzodiazepine Dependence-Self Report Questionnaire (Bendep-SRQ). The eligible normative group for standardization of the Bendep-SRQ scales consisted of 217 general
Goss, Christopher H.; Quittner, Alexandra L.
Over the past 20 years, there has been tremendous progress in the area of patient-reported outcomes (PROs). A PRO instrument is defined as any measure of a patient's health status that is elicited directly from the patient and assesses how the patient “feels or functions with respect to his or her health condition.” The advances seen in clinical research regarding PROs has been mirrored in research in cystic fibrosis (CF). A large number of instruments have been used for both therapeutic and ...
Schwartz, Carolyn E; Snook, Erin; Quaranto, Brian; Benedict, Ralph H B; Vollmer, Timothy
Adaptation and compensation in the face of changing pathology may be better understood by considering the concept of cognitive reserve, which may protect against disability in multiple sclerosis (MS). The present work investigates the relationship between cognitive reserve and demographic characteristics, health behaviors, and patient-reported outcomes (PROs). Cross-sectional data (n=1142) were drawn from the North American Research Committee on MS (NARCOMS) Registry, from whom additional survey data were collected. Cognitive reserve was measured using the Stern and Sole-Padulles measures, the O*NET occupational classification system, and the Godin Leisure-Time Exercise Questionnaire. PROs were assessed using generic (SF -12v2, Perceived Deficits Questionnaire, Ryff Psychological Well-Being, Diener Satisfaction with Life Scale) and disease-specific (Patient-Determined Disease Steps, Performance Scales) measures. Psychometric analysis created unidimensional cognitive reserve subscales. Regression models examined relationships between cognitive reserve, demographic characteristics, and PROs. The cognitive reserve measures assessed distinct but related constructs. Individuals with high cognitive reserve were more likely to report lower levels of perceived disability and perceived cognitive deficits, and higher levels of physical health, mental health, and well-being. Both active and passive reserve are associated with better outcomes, independent of demographic factors, and these associations apply to both generic and disease-specific outcomes. This expanded measurement of cognitive reserve captures both the passive and active aspects of the construct, and there is a consistent and substantial relationship with PROs. Individuals with high passive and/or active reserve are healthier and experience higher levels of well-being.
Magalhães Junior, Hipólito V; Pernambuco, Leandro de Araújo; Lima, Kenio C; Ferreira, Maria Angela F
Oropharyngeal dysphagia is a swallowing disorder with signs and symptoms which may be present in older adults, but they are rarely noticed as a health concern by older people. The earliest possible identification of this clinical condition is needed by self-reported population-based screening questionnaire, which are valid and reliable for preventing risks to nutritional status, increased morbidity and mortality. The aim of this systematic review was to identify self-reported screening questionnaires for oropharyngeal dysphagia in older adults to evaluate their methodological quality for population-based studies. An extensive search of electronic databases (PubMed (MEDLINE), Ovid MEDLINE(R), Scopus, Cochrane Library, CINAHL, Web of Science (WOS), PsycINFO (APA), Lilacs and Scielo) was conducted in the period from April to May 2017 using previously established search strategies by the two evaluators. The methodological quality and the psychometric properties of the included studies were evaluated by the COSMIN (Consensus based Standards for the selection of health Measurement Instruments) checklist and the quality criteria of Terwee and colleagues, respectively. The analysed information was extracted from three articles which had conducted studies on the prevalence of oropharyngeal dysphagia by self-reported screening questionnaires, showing poor methodological quality and flaws in the methodological description to demonstrate its psychometric properties. This study did not find any self-reported screening questionnaires for oropharyngeal dysphagia with suitable methodological quality and appropriate evidence in its psychometric properties for elders. Therefore, the self-reported questionnaires within the diagnostic proposal require greater details in its process for obtaining valid and reliable evidence. © 2018 John Wiley & Sons A/S and The Gerodontology Association. Published by John Wiley & Sons Ltd.
Gabriel, Kelley Pettee; Sidney, Stephen; Jacobs, David R; Quesenberry, Charles P; Reis, Jared P; Jiang, Sheng-Fang; Sternfeld, Barbara
The objective of this study is to determine whether summary estimates of a self-report physical activity questionnaire that does not specifically assess frequency or duration (the Coronary Artery Risk Development in Young Adults (CARDIA) physical activity history (PAH)) differs from the summary estimates of one that does (CARDIA Supplemental Questionnaire). After the year 25 examination (2010-2011), 203 CARDIA black and white men and women (age 50.3 ± 3.6 yr) at the Oakland, CA, site participated in this comparison study. The between-questionnaire association and agreement were determined for continuous and categorical estimates on the basis of 1) quartiles and 2) meeting 2008 physical activity guidelines. Differences in participant characteristics by concordance/discordance status were also examined. Finally, receiver operating characteristic curves were computed to determine the accuracy of the PAH compared with the supplemental questionnaire. Reported physical activity levels were high and varied significantly by race and sex (all P women than men were classified as concordant by quartile of vigorous intensity (P = 0.001), but no other participant characteristics were associated with concordant/discordant quartile ranking. Participants classified as concordant on the basis of physical activity guidelines had lower body mass index than those classified as discordant (both P physical activity guidelines. Although it is inconvenient that the PAH is not expressed in more standard units, these findings support the practice of not directly assessing frequency and duration, which are frequent sources of reporting error.
Gleason, Lauren Jan; Benton, Emily A; Alvarez-Nebreda, M Loreto; Weaver, Michael J; Harris, Mitchel B; Javedan, Houman
There are limited screening tools to predict adverse postoperative outcomes for the geriatric surgical fracture population. Frailty is increasingly recognized as a risk assessment to capture complexity. The goal of this study was to use a short screening tool, the FRAIL scale, to categorize the level of frailty of older adults admitted with a fracture to determine the association of each frailty category with postoperative and 30-day outcomes. Retrospective cohort study. Level 1 trauma center. A total of 175 consecutive patients over age 70 years admitted to co-managed orthopedic trauma and geriatrics services. The FRAIL scale (short 5-question assessment of fatigue, resistance, aerobic capacity, illnesses, and loss of weight) classified the patients into 3 categories: robust (score = 0), prefrail (score = 1-2), and frail (score = 3-5). Postoperative outcome variables collected were postoperative complications, unplanned intensive care unit admission, length of stay (LOS), discharge disposition, and orthopedic follow-up after surgery. Thirty-day outcomes measured were 30-day readmission and 30-day mortality. Analysis of variance (1-way) and Kruskal-Wallis tests were used to compare continuous variables across the 3 FRAIL categories. Fisher exact tests were used to compare categorical variables. Multiple regression analysis, adjusted by age, sex, and Charlson index, was conducted to study the association between frailty category and outcomes. FRAIL scale categorized the patients into 3 groups: robust (n = 29), prefrail (n = 73), and frail (n = 73). There were statistically significant differences between groups in terms of age, comorbidity, dementia, functional dependency, polypharmacy, and rate of institutionalization, being higher in the frailest patients. Hip fracture was the most frequent fracture, and it was more frequent as the frailty of the patient increased (48%, 61%, and 75% in robust, prefrail, and frail groups, respectively). The American
Chughtai, Morad; Patel, Nirav K; Gwam, Chukwuweike U; Khlopas, Anton; Bonutti, Peter M; Delanois, Ronald E; Mont, Michael A
The purpose of this study was to assess whether Center for Medicaid and Medicare services-implemented satisfaction (Press Ganey [PG]) survey results correlate with established total knee arthroplasty (TKA) assessment tools. Data from 736 patients who underwent TKA and received a PG survey between November 2009 and January 2015 were analyzed. The PG survey overall hospital rating scores were correlated with standardized validated outcome assessment tools for TKA (Short form-12 and 36 Health Survey; Knee Society Score; Western Ontario and McMaster Universities Arthritis Index; University of California, Los Angeles; and visual analog scale) at a mean follow-up of 1154 days post-TKA. There was no correlation between PG survey overall hospital rating score and the above-mentioned outcome assessment tools. Our study shows that there is no statistically significant relationship between established arthroplasty assessment tools and the PG overall hospital rating. Therefore, PG surveys may not be an appropriate tool to determine reimbursement for orthopedists performing TKAs. Copyright © 2017 Elsevier Inc. All rights reserved.
Kim, Moon Jung [Graduate School of Public Health, Korea University, Seoul (Korea, Republic of); Cha, Eun Shil; Lee, Won Jin [Dept. of Preventive Medicine, Korea University College of Medicine, Seoul (Korea, Republic of)
Self-completed questionnaires were used to obtain information on exposures and otherb factors necessary to evaluated disease risks. Although reliability of lifetime sun exposure of U.S. radiologic technologists and life-style factors, medical exams, and disease history of Korean nuclear power plants workers (2) were reported, few studies have evaluated the reliability of information obtained on radiation-related work in epidemiologic investigations. The aims of the study is to assess reliability of self-reported questionnaire for occupational radiation work in the radiologic technologists in Korea. Overall agreement and kappa regarding radiation work procedure, work practice, and work history were similar to those generally found for factors typically used in epidemiologic studies such as smoking (98% and 0.95) and alcohol consumption (88% and 0.67), and higher than physical activity (76% and 0.51).
Greenley, Rachel Neff; Doughty, Alyssa; Stephens, Mike; Kugathasan, Subra
To present psychometric data on youth and parent versions of the Inflammatory Bowel Disease-Family Responsibility Questionnaire (IBD-FRQ), a measure of family involvement in IBD management. Fifty-eight adolescents with inflammatory bowel disease (IBD), along with 55 mothers and 26 fathers completed the IBD-FRQ, a demographics questionnaire, and a measure of family involvement in decision making in non-IBD domains. Medical information was obtained via chart review. Support for the internal consistency of the IBD-FRQ was obtained. Evidence of validity was documented via moderate to high intercorrelations among reporters. Youth involvement increased with youth age, while maternal and paternal involvement decreased with youth age. Across all reporters, maternal involvement was higher than paternal involvement. Preliminary analyses offer support for the measure's reliability and validity. The measure shows promise as a means of assessing family involvement in IBD condition management; however, further validation studies are needed.
Kim, Moon Jung; Cha, Eun Shil; Lee, Won Jin
Self-completed questionnaires were used to obtain information on exposures and otherb factors necessary to evaluated disease risks. Although reliability of lifetime sun exposure of U.S. radiologic technologists and life-style factors, medical exams, and disease history of Korean nuclear power plants workers (2) were reported, few studies have evaluated the reliability of information obtained on radiation-related work in epidemiologic investigations. The aims of the study is to assess reliability of self-reported questionnaire for occupational radiation work in the radiologic technologists in Korea. Overall agreement and kappa regarding radiation work procedure, work practice, and work history were similar to those generally found for factors typically used in epidemiologic studies such as smoking (98% and 0.95) and alcohol consumption (88% and 0.67), and higher than physical activity (76% and 0.51).
Leboeuf, C; Love, A; Crisp, T C
The subjective complaints of 41 chronic low back pain sufferers attending a chiropractic clinic were assessed twice prior to therapy with a widely used psychological self-report assessment tool, the Middlesex Hospital Questionnaire (MHQ) and a newly developed VAS Disability Scales Questionnaire (DISQ), both of which investigate various aspects of certain basic positions and activities. Reliability was generally acceptable with these two questionnaires. Subjects participating in the study were commonly found to score within the normal range on the MHQ, indicating that psychological disturbance was not a major feature of their presentation. However, mild mood disturbance was commonly reported, and a more sensitive tool may need to be developed for this type of mildly affected chronic low back pain sufferers. The DISQ generally indicated subjects were mildly to moderately affected by their low back trouble and that sitting and leisure activities were the most pain provoking. Recommendations for further development of the disability scale are made.
MORLEY, J.E.; MALMSTROM, T.K.; MILLER, D.K.
Objective To validate the FRAIL scale. Design Longitudinal study. Setting Community. Participants Representative sample of African Americans age 49 to 65 years at onset of study. Measurements The 5-item FRAIL scale (Fatigue, Resistance, Ambulation, Illnesses, & Loss of Weight), at baseline and activities of daily living (ADLs), instrumental activities of daily living (IADLs), mortality, short physical performance battery (SPPB), gait speed, one-leg stand, grip strength and injurious falls at baseline and 9 years. Blood tests for CRP, SIL6R, STNFR1, STNFR2 and 25 (OH) vitamin D at baseline. Results Cross-sectionally the FRAIL scale correlated significantly with IADL difficulties, SPPB, grip strength and one-leg stand among participants with no baseline ADL difficulties (N=703) and those outcomes plus gait speed in those with no baseline ADL dependencies (N=883). TNFR1 was increased in pre-frail and frail subjects and CRP in some subgroups. Longitudinally (N=423 with no baseline ADL difficulties or N=528 with no baseline ADL dependencies), and adjusted for the baseline value for each outcome, being pre-frail at baseline significantly predicted future ADL difficulties, worse one-leg stand scores, and mortality in both groups, plus IADL difficulties in the dependence-excluded group. Being frail at baseline significantly predicted future ADL difficulties, IADL difficulties, and mortality in both groups, plus worse SPPB in the dependence-excluded group. Conclusion This study has validated the FRAIL scale in a late middle-aged African American population. This simple 5-question scale is an excellent screening test for clinicians to identify frail persons at risk of developing disability as well as decline in health functioning and mortality. PMID:22836700
Keihani-Doust, Zarrin; Saeedi, Maryam; Esmaeilni, Tahere; Habibi, Massoud; Nazari, Seyed Saeed Hashemi
Birth asphyxia is one of the multiple causes of neonatal encephalopathy. The objective of this study was to evaluate neurodevelopmental outcomes of newborn term infants with definitive asphyxia. Thirty infants met study criteria for asphyxia. The 5-year incidence of asphyxia was estimated to be 5.5 in 1000. According to the Age and Stage Questionnaire, 10.5% of 6-month-old infants, 14.3% of 12- and 18-month-old infants, and 5.3% of 24-month-old infants had neurodevelopmental delay in gross motor function in the absence of cerebral palsy. In 7.3% of 18-month-old infants, neurodevelopmental delay in problem-solving ability was observed. Higher values of Apgar score and bicarbonate levels were associated with higher Age and Stage Questionnaire total score. Delivery type, maternal age, gravidity of mother, and existence of mother disease during pregnancy were also associated with lower Age and Stage Questionnaire total score in different stages of life.
Thorlund, Jonas Bloch; Englund, Martin; Christensen, Robin
orthopaedic departments in the Region of Southern Denmark. Participants were recruited between 1 February 2013 and 31 January 2014, and at one of the original four hospitals from 1 February 2014 to 31 January 2015. PARTICIPANTS: Individuals selected from Knee Arthroscopy Cohort Southern Denmark, aged 18...... on knee pathology. Patient reported outcomes were recorded via online questionnaires. MAIN OUTCOME MEASURES: Primary outcome was the average between-group difference in change on four of five subscales of the knee injury and osteoarthritis outcome score (KOOS). The four subscales covered pain, symptoms...
Hong, Su; Li, QiuJie
To investigate the impact of nurses' perception of patient safety culture and adverse event reporting, and demographic factors on adverse event reporting in Chinese hospitals. Accurate and timely adverse event reporting is integral in promoting patient safety and professional learning around the incident. In a cross-sectional survey, a sample of 919 nurses completed a structured questionnaire composed of two validated instruments measuring nurses' perception of patient safety culture and adverse event reporting. Associations between the variables were examined using multiple linear regression analysis. The positive response rates of five dimensions of the Patient Safety Culture Assessment Scale varied from 47.55% to 80.62%. The accuracy rate of Adverse Event Reporting Perception Scale was 63.16%. Five hundred and thirty-one (58.03%) nurses did not report adverse event in past 12 months. Six variables were found to be associated with nurses' adverse event reporting: total work experience (P = 0.003), overall patient safety culture score (P teamwork climate (P importance or reporting (P = 0.002). The results confirmed that improvements in the patient safety culture and nurses' perception of adverse event reporting were related to an increase in voluntary adverse event reporting. The knowledge of adverse event reporting should be integrated into the patient safety curriculum. Interventions that target a specific domain are necessary to improve the safety culture. © 2017 John Wiley & Sons Ltd.
Liu, Ke; You, Li-Ming; Chen, Shao-Xian; Hao, Yuan-Tao; Zhu, Xiao-Wen; Zhang, Li-Feng; Aiken, Linda H
This study examines the relationship between hospital work environments and job satisfaction, job-related burnout and intention to leave among nurses in Guangdong province, China. The nursing shortage is an urgent global problem and also of concern in China. Studies in Western countries have shown that better work environments are associated with higher nurse satisfaction and lower burnout, thereby improving retention and lowering turnover rates. However, there is little research on the relationship between nurse work environments and nurse outcomes in China. This is a cross-sectional study. Survey data were collected from 1104 bedside nurses in 89 medical, surgical and intensive care units in 21 hospitals across the Guangdong province in China. Stratified convenience sampling was used to select hospitals, and systematic sampling was used to select units. All staff nurses working on participating units were surveyed. The China Hospital Nurse Survey, including the Practice Environment Scale of the Nursing Work Index and Maslach Burnout Inventory, was employed to collect data from nurses. Statistical significance level was set at 0·05. Thirty-seven per cent of the nurses experienced high burnout, and 54% were dissatisfied with their jobs. Improving nurses' work environments from poor to better was associated with a 50% decrease in job dissatisfaction and a 33% decrease in job-related burnout among nurses. Burnout and job dissatisfaction are high among hospital nurses in Guangdong province, China. Better work environments for nurses were associated with decreased job dissatisfaction and job-related burnout, which may successfully address the nursing shortage in China. The findings of this study indicate that improving work environments is essential to deal with the nursing shortage; the findings provide motivation for nurse managers and policy makers to improve work environments of hospital nurses in China. © 2012 Blackwell Publishing Ltd.
Spiekermann, Christoph; Rudack, Claudia; Stenner, Markus
The outcome of aesthetic rhinoplasty is determined by the patient's subjective satisfaction with the nasal appearance which is difficult to assess. The Utrecht Questionnaire for Outcome Assessment in Aesthetic Rhinoplasty (OAR) is a brief and reliable instrument to assess the influence of the subjective nasal appearance on quality of life in patients undergoing aesthetic rhinoplasty. Preoperative application of this questionnaire reveals important aspects and possible disturbances of the body image which could be negative predictors concerning the result. On the other hand, it represents an appropriate tool to assess the postoperative outcome. The aim of this study was to determine the validity, reliability and responsiveness of the adapted German version of the OAR (D-OAR). The adaption of the OAR to German language was performed by a forward and backward translation process. Patients undergoing rhinoplasty were asked to complete the D-OAR preoperatively, 1, 3 and 12 months after procedure and healthy volunteers without any nasal complaints served as controls to test validity, reliability and responsiveness. An excellent internal consistency, a good test-retest reliability and good inter-item and item-total correlations demonstrated a good reliability of the D-OAR. The convincing validity of the adapted version was proven by an excellent discriminant and a sufficient content validity. Significant differences between pre- and postoperative D-OAR scores revealed a good responsiveness of the instrument. Hence, with a sufficient validity, reliability and sensitivity to changes, the D-OAR is a short and helpful instrument to assess the subjective perception of the nasal appearance in German patients.
Younossi, Zobair M.; Stepanova, Maria; Zeuzem, Stefan; Dusheiko, Geoffrey; Esteban, Rafael; Hezode, Christophe; Reesink, Hendrik W.; Weiland, Ola; Nader, Fatema; Hunt, Sharon L.
Interferon (IFN) negatively impacts patients' well-being and patient-reported outcomes (PROs). Our aim was to assess PROs during treatment with an IFN-free regimen [sofosbuvir (SOF)+ribavirin (RBV)]. Four PRO questionnaires [Short Form-36 (SF-36), Chronic Liver Disease Questionnaire-HCV (CLDQ-HCV),
Sørensen, Tina Juul; Søgaard, Karen; Roos, Ewa M
removed from the original 69. A multidimensional questionnaire, divided into five subscales, was developed from the remaining 34 items: mobility; symptoms; sleep disturbance; everyday activity and pain; and participation in everyday life. Exploratory factor analysis supported a 5-subscale structure...
Dubray, Samantha; Gérard, Marina; Beaulieu-Prévost, Dominic; Courtois, Frédérique
Despite a plethora of research on sexual functioning during the past decades, the field is still lacking standardized measurements specifically characterizing orgasm. Although several validated tools are available to assess sexual function in healthy and clinical populations, items on orgasm are limited to frequency or dichotomous responses. A neurophysiologic model of orgasm developed from previous research in able-bodied and spinally injured populations offers a promising framework for the construction of a new questionnaire. To develop and validate a brief self-report measurement of orgasm by the assessment of bodily and physiologic sensations perceived during climax by able-bodied individuals. Although the currently available tool focuses on the phenomenological sensations associated with climax, the goal of this questionnaire was to capture the more specific genital and extragenital sensations associated with orgasm. The current Bodily Sensations of Orgasm questionnaire and the Orgasm Rating Scale. Data from previous research conducted on individuals with spinal cord injury and the available empirical literature provided a pool of 45 items organized into four categories, which were reviewed by an expert panel. Upon review, a 28-item questionnaire was created and administered to a community sample of 227 participants, including men and women, 18 to 73 years old. Exploratory factor analyses supported the four-factor model, in which orgasm is comprised of extragenital sensations, genital sensations and spasms, nociceptive sensations, and sweating responses. Overall, a high degree of internal consistency was found for the final 22-item questionnaire (Cronbach α = 0.87), with individual reliability coefficients showing moderate to high internal consistency (r = 0.65-0.79) for each dimension. Overall temporal stability of the measurement was acceptable (r = 0.74). Using the Orgasm Rating Scale, satisfying convergent validity was confirmed, thereby indicating
Gerson, C D; Gerson, M-J
Patient reported outcome (PRO) is an important healthcare concept that describes patient's participation in their care by self-evaluation, usually in the form of questionnaires. This report describes an unique computerized technique, electronic PRO (ePRO), for following the progress of patients with irritable bowel syndrome (IBS). Patients first completed a series of questionnaires, including questions about their illness history, symptom severity, and, in this application, psychological and relationship issues. The symptom severity and psychological questionnaires were then completed at intervals by the patients on their own computers. The ePRO was constructed to allow scores to be automatically summed and placed on a time-line graph for review at the time of the next office visit. Of the 32 patients who completed the initial set of questionnaires, 20 maintained participation in the program for a 6-month period. Of those 20 patients, median number of submissions was 7.0; median interval between questionnaire submissions was 3.0 weeks, whereas median interval between office visits was 5.9 weeks. On average, questionnaire completion took less than 5 min and was positively experienced by the patients. The ePRO program proved to be technically feasible, clinically useful, and positively experienced by the patients. It provides a focus on a collaborative conversation between physician and patient. It has significant potential as a technique for evaluating outcome in response to various therapies. © 2013 John Wiley & Sons Ltd.
Vanstone, Ashley D; Wolf, Michael; Poon, Tina; Cuddy, Lola L
This study describes the development of the Music Engagement Questionnaire (MusEQ), a 35-item scale to measure engagement with music in daily life. Music has implications for well-being and for therapy, notably for individuals living with dementia. A number of excellent scales or questionnaires are now available to measure music engagement. Unlike these scales, the MusEQ may be completed by either the participant or an informant. Study 1 drew on a community-based sample of 391 participants. Exploratory factor analysis revealed six interpretable factors, which formed the basis for construction of six subscales. Study 2 applied the MusEQ to a group of participants with Alzheimer's disease (AD; n = 16) as well as a group of neurotypical older adults (OA; n = 16). Informants completed the MusEQ, and the OA group also completed the self-report version of the MusEQ. Both groups had an interview in which they described the place music had in their lives. These interviews were scored by three independent raters. The MusEQ showed excellent internal consistency. Five of the factor-derived subscales showed good or excellent internal consistency. MusEQ scores were moderately correlated with a global rating of 'musicality' and with music education. There was strong agreement between self-report and informant-report data. MusEQ scores showed a significant positive relationship to independent ratings of music engagement. The MusEQ provides a meaningful and reliable option for measuring music engagement among participants who are unable to complete a self-report questionnaire.
Wæhrens, Eva Elisabet Ejlersen; Amris, Kirstine; Bartels, Else Marie
OBJECTIVES: To compare data based on computerized and paper versions of health status questionnaires (HSQs) for sampling patient-reported outcomes (PROs) in patients with fibromyalgia (FM). In addition, to examine associations between patient characteristics (age, education, computer experience......) and differences between versions. Finally, to evaluate the acceptability of computer-based questionnaires among patients with FM. METHOD: The study population comprised female patients diagnosed with FM. All patients completed six HSQs: the Fibromyalgia Impact Questionnaire (FIQ), the Major Depression Inventory...
Ronze, M; Mamelle, N; Combe, C; Pugeat, M
Our working hypothesis is that a better insight into the outcome of patients suffering from anorexia nervosa should contribute to preventing relapses and further complications and assessing treatment efficiency. Through anorexia nervosa, the patients express the difficulty they have to view themselves as specific subjects. The current classic outcome evaluation is based on the study of objective events, which only partially reflect the reality of the patients' outcome at a subjective level. The objective of this study was to set up a new assessing instrument of the outcome of patients suffering from anorexia nervosa, essentially based on the patients' perception of their experience. The methodology used has been based on: (1) the conduct by the main investigator of unstructured interviews using "free association", with the help of an interview guide. The anorexia nervosa patients were recruited among those who were hospitalized on an isolation contract, or among outpatients under a psychiatrist/psychoanalyst's supervision, aged over 25 years old so that they may have started their reproductive life. The study included 30 patients; (2) the analysis of the interview contents backed by preexisting hypotheses and by new ones suggested by the expression of the patients' perception, so as to set up an inventory of new themes; (3) the construction of a self-administered questionnaire starting from the development of each theme into several questions taking up the patients' own words and offering 4 possible answers (disagree completely, disagree, agree, quite agree). The analysis of the interviews contents has led to the development of 11 themes. The self-administered questionnaire includes a total of 124 items stemming from the development of each theme into between 9 and 16 items that were mixed in the version submitted to patients. This original interpretation of the outcome of the patients through their experience provides a better understanding of their relation to
PROs are used increasingly in orthopedics and in joint registries, but still many aspects of use in this area have not been examined in depth. To be able to introduce PROs in the DHR in a scientific fashion, my studies were warranted; the feasibility of four often used PROs (OHS, HOOS, EQ-5D and SF-12) was examined in a registry context. Having the PROs in the target language is an absolute necessity, so I translated, cross-culturally adapted and validated a Danish language version of an often used PRO (OHS), since this PRO had no properly developed Danish language version. To minimize data loss and to maximize the data quality I validated our data capture procedure, an up to date AFP system, by comparing scannable, paper-based PROs, with manual single-key- and double-key entered data. To help further registry-PRO studies, I calculated the number of patients needed to discriminate between subgroups of age, sex, diagnosis, and prosthesis type for each of four often used PROs (OHS, HOOS, EQ-5D and SF-12), and to simplify the clinical interpretation of PRO scores and PRO change scores in PRO studies, I estimated MCII and PASS for two often used PROs (EQ-5D and HOOS). The feasibility study included 5,747 THA patients registered in the DHR, and I found only minor differences between the disease-specific and the generic PROs regarding ceiling and floor effects as well as discarded items. The HOOS, the OHS, the SF-12, and the EQ-5D are all appropriate PROs for administration in a hip registry. I found that group sizes from 51 to 1,566 were needed for subgroup analysis, depending on descriptive factors and choice of PRO. The AFP study included 200 THA patients (398 PROs, 4,875 items and 21,887 data fields), and gave excellent results provided use of highly structured questionnaires. OMR performed equally as well as manual double-key entering, and better than single-key entering. The PRO translation and validation study included 2,278 patients (and 212 patients for the test
Bian, Xiuhua; Song, Tao; Wu, Shixiu
The aim of this study was to review the published literature addressing the question of whether intensity-modulated radiotherapy (IMRT) resulted in an improvement of quality of life (QoL), especially xerostomia-related QoL of all nasopharyngeal carcinoma patients as time progressed. A literature search of PubMed, Embase and Google Scholar was performed, only reports containing original data of the QoL scores after treated by IMRT were included. Two independent reviewers extracted information of study design, study population, interventions, outcome measures and conclusions for each article. The inclusion criteria were met by 14 articles covering outcomes based on the questionnaires treated by IMRT. Data from same questionnaires (European Organization of Research and Treatment of Cancer QLQ-C30 and H&N35 questionnaires) were exacted and we analyzed four items (global health status, dry mouth and sticky saliva, swallowing, social eating and social contact), which have a close relationship with xerostomia-related QoL. Results indicated that a maximal deterioration of most QoL scales including global health status developed during treatment or at the end of the treatment course and then followed by a gradual recovery to 1 year, 1-2 years after IMRT, compared with their baseline level, some specific head and neck items, most in the EORTC QLQ H&N35, remained worse for the surviving patients. In conclusion, the published data reasonably support the benefits of IMRT in improving QoL, but xerostomia-related items still had a significantly negative effect in 2 years to impact a survivor's QoL.
Giuffrida, Michelle A; Brown, Dorothy Cimino; Ellenberg, Susan S; Farrar, John T
OBJECTIVE To describe development and initial psychometric testing of an owner-reported questionnaire designed to standardize measurement of general quality of life (QOL) in dogs with cancer. DESIGN Key-informant interviews, questionnaire development, and field trial. SAMPLE Owners of 25 dogs with cancer for item development and pretesting and owners of 90 dogs with cancer for reliability and validity testing. PROCEDURES Standard methods for development and testing of questionnaire instruments intended to measure subjective states were used. Items were generated, selected, scaled, and pretested for content, meaning, and readability. Response items were evaluated with exploratory factor analysis and by assessing internal consistency (Cronbach α) and convergence with global QOL as determined with a visual analog scale. Preliminary tests of stability and responsiveness were performed. RESULTS The final questionnaire-which was named the Canine Owner-Reported Quality of Life (CORQ) questionnaire-contained 17 items related to observable behaviors commonly used by owners to evaluate QOL in their dogs. Several items pertaining to physical symptoms performed poorly and were omitted. The 17 items were assigned to 4 factors-vitality, companionship, pain, and mobility-on the basis of the items they contained. The CORQ questionnaire and its factors had high internal consistency (Cronbach α = 0.68 to 0.90) and moderate to strong correlations (r = 0.49 to 0.71) with global QOL as measured on a visual analog scale. Preliminary testing indicated good test-retest reliability and responsiveness to improvements in overall QOL. CONCLUSIONS AND CLINICAL RELEVANCE The CORQ questionnaire was a valid, reliable owner-reported questionnaire that measured general QOL in dogs with cancer and showed promise as a clinical trial outcome measure for quantifying changes in individual dog QOL occurring in response to cancer treatment and progression.
Full Text Available Following the implementation of electronic nursing records in a psychogeriatric ward, we examined nursing staff's attitudes and perceptions to the implementation of an electronic handover routine. A web-based anonymous and secure questionnaire was distributed by e-mail to all nursing staff at a psychogeriatric ward at a university hospital. Most respondents were satisfied with the electronic handover, and they believed they managed to keep informed by the new routine. The simultaneous introduction of a morning meeting, to ensure a forum for oral professional discussion, was a success. A minority of staff did not fully trust the information conveyed in the electronic handover, and a significant proportion expressed a need for guidance in using the system. Staff that had a high level of trust in written reports believed these saved time, had little trouble finding time and a place to read the reports, and were more positive to the new handover routine.
Ashley, Laura; Jones, Helen; Thomas, James; Newsham, Alex; Downing, Amy; Morris, Eva; Brown, Julia; Velikova, Galina; Forman, David; Wright, Penny
Routine measurement of Patient Reported Outcomes (PROs) linked with clinical data across the patient pathway is increasingly important for informing future care planning. The innovative electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system was developed to integrate PROs, collected online at specified post-diagnostic time-points, with clinical and treatment data in cancer registries. This study tested the technical and clinical feasibility of ePOCS by running the system with a sample of potentially curable breast, colorectal, and prostate cancer patients in their first 15 months post diagnosis. Patients completed questionnaires comprising multiple Patient Reported Outcome Measures (PROMs) via ePOCS within 6 months (T1), and at 9 (T2) and 15 (T3) months, post diagnosis. Feasibility outcomes included system informatics performance, patient recruitment, retention, representativeness and questionnaire completion (response rate), patient feedback, and administration burden involved in running the system. ePOCS ran efficiently with few technical problems. Patient participation was 55.21% (636/1152) overall, although varied by approach mode, and was considerably higher among patients approached face-to-face (61.4%, 490/798) than by telephone (48.8%, 21/43) or letter (41.0%, 125/305). Older and less affluent patients were less likely to join (both Pplanning and for targeting service provision.
Egerton, Thorlene; Riphagen, Ingrid I; Nygård, Arnhild J; Thingstad, Pernille; Helbostad, Jorunn L
The assessment of fatigue in older people requires simple and user-friendly questionnaires that capture the phenomenon, yet are free from items indistinguishable from other disorders and experiences. This study aimed to evaluate the content, and systematically review and rate the measurement properties of self-report questionnaires for measuring fatigue, in order to identify the most suitable questionnaires for older people. This study firstly involved identification of questionnaires that purport to measure self-reported fatigue, and evaluation of the content using a rating scale developed for the purpose from contemporary understanding of the construct. Secondly, for the questionnaires that had acceptable content, we identified studies reporting measurement properties and rated the methodological quality of those studies according to the COSMIN system. Finally, we extracted and synthesised the results of the studies to give an overall rating for each questionnaire for each measurement property. The protocol was registered with PROSPERO (CRD42013005589). Of the 77 identified questionnaires, twelve were selected for review after content evaluation. Methodological quality varied, and there was a lack of information on measurement error and responsiveness. The PROMIS-Fatigue item bank and short forms perform the best. The FACIT-Fatigue scale, Parkinsons Fatigue Scale, Perform Questionnaire, and Uni-dimensional Fatigue Impact Scale also perform well and can be recommended. Minor modifications to improve performance are suggested. Further evaluation of unresolved measurement properties, particularly with samples including older people, is needed for all the recommended questionnaires.
Japan Association of Radiological Technologists, at 2 years after its presentation of the Guideline for Medical Radiation Exposure (2006), made a questionnaire in the title on its homepage on Nov. 6-Dec. 5, 2008, and this paper is its report. The questionnaire asked the conditions and exposure doses at thoracoabdominal radiography and CT: in the former, asked were conditions like the machine/detector, tube voltage, filter, incident angle, entrance plane dose (EPD) (mGy) etc., and 237 facilities including 56 public hospitals and 15 universities answered. EPD calculated by numerical dose determination was found to be 0.22 and 0.76 mGy at the frontal and lateral thoracic projection, respectively, which were less than the upper limit defined in International Atomic Energy Agency (IAEA) guidance (0.4 and 1.5 mGy). However, doses in 6 and 2.6% of facilities at the respective projection exceeded the IAEA levels. EPD at the frontal abdominal projection calculated was 2.22 mGy, and all facilities met with the IAEA demand level (<10 mGy). In the CT questionnaire, conditions asked were the machine manufacturer/brand, scanning mode and range, tube voltage, rotation time, beam width and pitch, slice width, CTDIvol (CT Dose Index weighted/pitch) (mGy) and so on, which 212 facilities involving 58 public hospitals and 14 universities answered. CTDIvol was found to be 91.7 mGy at head CT which greatly exceeded the maximal levels of International Commission of Radiological Protection (ICRP), IAEA and the Association (60, 50 and 65 mGy, respectively). CTDIvol at thoracic CT was 15.2 mGy (no standard upper limit at present), and at abdominal CT, 20.0 mGy (the same as the Association level). The latter suggested the suitable dose setting at this CT. Thus the problem at head CT was much highlighted here. (K.T.)
A questionnaire survey on safety of nuclear medicine studies was conducted under the subcommittee for radionuclide imaging and nuclear medicine technology of Japan Radioisotope Association to promote patient safety. Questionnaires were sent to 1300 hospitals and 21 clinical laboratories in Japan with 1034 facilities responded (78.3%). Sixty percents of the workers in the facilities were nuclear medicine technologists. Medical doctors comprised 20% of the workers, but 32% in the university hospitals. The number of laboratory technologists decreased in all categories of the facilities. Composite PET/CT scanners increased sharply, whereas 2-detector and 3-detector imaging systems decreased. Regular maintenance was performed in approximately 80% of the SPECT imaging systems, while the single head imaging systems were maintained less frequently. Filmless systems were employed in 25.3% of all of the facilities responded, with the higher rate in the university hospitals. The number of accidents and incidents in the facilities decreased. Falls on floor and fall from an examination bed were reported. The nuclear medicine technologists were concerned about safety mechanism of imaging systems, and dimension and height of examination beds. They also wanted prompt supply of safety information and easy interconnectivity among different data of various vendors' systems. The results of this survey may be a valuable source of information on safety of nuclear medicine procedures. (author)
Hirata, Toshiyuki; Koyama, Masanori; Saito, Masato; Ikai, Takeshi; Nakajima, Fujio; Matsui, Masayuki; Kadono, Koji; Miura, Teruo; Igimi, Yutaka
Authors conducted the questionnairing on the radiation protection in cooperation with nurses. And on the basis of the results, we reported here what is now important for the radiation protection and what we can do as the team medical activities, including the discussion with other documents. On November 1996, the questionnairing was conducted in 165 nurses of Saiseikai Shiga Hospital and replies were received from 78% of them. Nurses from 1 year to <3 years in experience were 44% and these from 3 to <5 years in experience 19%. The questionaire was designed to elicit the interest, the sense and the understanding on the medical radiation protection, and to obtain what kinds of the interest they have and what they want to know. On the understanding of the radiation, many nurses had much interest in the radiation exposure to patients and nurses own, which occupied 33% of the respondents. One hundred thirteen nurses (68%) had some questions on the radiation protection, in which the most was on the potable radiation apparatus. Among patients' questions about the radiation, the most numerous was on the physical and genetic effects and many nurses could not respond the suitably. On the basis of these results nurses were given the training. (K.H.)
Green, Andrew; Liles, Clive; Rushton, Alison; Kyte, Derek G
This systematic review investigated the measurement properties of disease-specific patient-reported outcome measures used in Patellofemoral Pain Syndrome. Two independent reviewers conducted a systematic search of key databases (MEDLINE, EMBASE, AMED, CINHAL+ and the Cochrane Library from inception to August 2013) to identify relevant studies. A third reviewer mediated in the event of disagreement. Methodological quality was evaluated using the validated COSMIN (Consensus-based Standards for the Selection of Health Measurement Instruments) tool. Data synthesis across studies determined the level of evidence for each patient-reported outcome measure. The search strategy returned 2177 citations. Following the eligibility review phase, seven studies, evaluating twelve different patient-reported outcome measures, met inclusion criteria. A 'moderate' level of evidence supported the structural validity of several measures: the Flandry Questionnaire, Anterior Knee Pain Scale, Functional Index Questionnaire, Eng and Pierrynowski Questionnaire and Visual Analogue Scales for 'usual' and 'worst' pain. In addition, there was a 'Limited' level of evidence supporting the test-retest reliability and validity (cross-cultural, hypothesis testing) of the Persian version of the Anterior Knee Pain Scale. Other measurement properties were evaluated with poor methodological quality, and many properties were not evaluated in any of the included papers. Current disease-specific outcome measures for Patellofemoral Pain Syndrome require further investigation. Future studies should evaluate all important measurement properties, utilising an appropriate framework such as COSMIN to guide study design, to facilitate optimal methodological quality. Copyright © 2014 Elsevier Ltd. All rights reserved.
Lui, Michelle; Gallo-Hershberg, Daniela; DeAngelis, Carlo
Systemic therapy-induced diarrhea (STID) is a common side effect experienced by more than half of cancer patients. Despite STID-associated complications and poorer quality of life (QoL), no validated assessment tools exist to accurately assess STID occurrence and severity to guide clinical management. Therefore, we developed and validated a patient-reported questionnaire (STIDAT). The STIDAT was developed using the FDA iterative process for patient-reported outcomes. A literature search uncovered potential items and questions for questionnaire construction used by oncology clinicians to develop questions for the preliminary instrument. The instrument was evaluated on its face validity and content validity by patient interviews. Repetitive, similar and different themes uncovered from patient interviews were implemented to revise the instrument to the version used for validation. Patients starting high-risk STID treatments were monitored using the STIDAT, bowel diaries and EORTC QLQ-C30. The STIDAT was evaluated for construct validity using exploratory factor analysis (EFA) using minimal residual method with Promax rotation, reliability and consistency. A weighted scoring system was developed and a receiver-operating characteristic (ROC) curve evaluated the tool's ability to detect STID occurrence. Median scores and variability were analysed to determine how well it differentiates between diarrhea severities. A post-hoc analysis determined how diarrhea severity impacted QoL of cancer patients. Patients defined diarrhea based on presence of watery stool. The STIDAT assessed patient's perception of having diarrhea, daily number of bowel movements, daily number of diarrhea episodes, antidiarrheal medication use, the presence of urgency, abdominal pain, abdominal spasms or fecal incontinence, patient's perception of diarrhea severity, and QoL. These dimensions were sorted into four clusters using EFA - patient's perception of diarrhea, frequency of diarrhea, fecal
Rogozińska, Ewelina; Marlin, Nadine; Yang, Fen
AIM: Trials on diet and physical activity in pregnancy report on various outcomes. We aimed to assess the variations in outcomes reported and their quality in trials on lifestyle interventions in pregnancy. METHODS: We searched major databases without language restrictions for randomized controlled...... trials on diet and physical activity-based interventions in pregnancy up to March 2015. Two independent reviewers undertook study selection and data extraction. We estimated the percentage of papers reporting 'critically important' and 'important' outcomes. We defined the quality of reporting...... as a proportion using a six-item questionnaire. Regression analysis was used to identify factors affecting this quality. RESULTS: Sixty-six randomized controlled trials were published in 78 papers (66 main, 12 secondary). Gestational diabetes (57.6%, 38/66), preterm birth (48.5%, 32/66) and cesarian section (60...
Lundervold, Astri J.; Breivik, Kyrre; Posserud, Maj-Britt; Stormark, Kjell Morten; Hysing, Mari
The present study investigated sex-differences in reports of depressive symptoms on a Norwegian translation of the short version of the Mood and Feelings Questionnaire (SMFQ). The sample comprised 9702 Norwegian adolescents (born 1993–1995, 54.9% girls), mainly attending highschool. A set of statistical analyses were run to investigate the dimensionality of the SMFQ. Girls scored significantly higher than boys on the SMFQ and used the most severe response-category far more frequently. Overall, the statistical analyses supported the essential unidimensionality of SMFQ. However, the items with the highest loadings according to the bifactor analysis, reflecting problems related to tiredness, restlessness and concentration difficulties, indicated that some of the symptoms may both be independent of and part of the symptomatology of depression. Measurement invariance analysis showed that girls scored slightly higher on some items when taking the latent variable into account; girls had a lower threshold for reporting mood problems and problems related to tiredness than boys, who showed a marginally lower threshold for reporting that no-one loved them. However, the effect on the total SMFQ score was marginal, supporting the use of the Norwegian translation of SMFQ as a continuous variable in further studies of adolescents. PMID:24062708
Full Text Available Studies of emotional intelligence (EI initially appeared in academic journals in the early 1990s. The majority of studies on emotional intelligence have relied on self-ratings. In spite of the critics of self-report scales, there are a large number of self-report measures of EI present in recent literature. The main aim of this paper is to present the constructing procedure, together with the basic psychometric properties of Emotional Skills and Competence Questionnaire (ESCQ as a self-report measure of EI. Originally, this measure was developed in Croatian settings, using the theoretical framework from the Mayer-Salovey emotional intelligence model. The ESCQ instrument has been translated into several languages. The results have showed that ESCQ has three subscales with decent reliability. They share some amount of common variance with similar well-established constructs such as alexithymia, social skills, and personality traits, but they are not correlated with cognitive abilities. However, due to its sufficient reliability, a great deal of unique variance remains. This unique variance of the ESCQ scales has an incremental contribution in explaining life satisfaction and empathy (as the crucial criteria for EI, and has significant relations with relevant real-life criteria such as quality of leadership, health risk behaviors, and school achievement.
Hartke, Vance; Gillespie, Amanda; Smith, Libby J; Soose, Ryan J
Upper aerodigestive tract symptoms are common in patients with obstructive sleep apnea (OSA). It remains unclear whether continuous positive airway pressure (CPAP) improves or worsens these otolaryngology symptoms. As therapy-related side effects limit CPAP adherence, this study aimed to determine if CPAP negatively affects voice, sinonasal, and reflux symptoms of the upper airway. Case series with planned data collection was performed at an academic otolaryngology sleep center. Newly diagnosed patients with OSA were evaluated before and 6 months after initiating CPAP therapy. Data collected included CPAP data download, Reflux Symptom Index (RSI), Epworth Sleepiness Scale (ESS), Voice Handicap Index 10 (VHI-10), Sino-Nasal Questionnaire (SNQ), and oral dryness visual analog scale (VAS). For the 11 CPAP-adherent participants, the RSI significantly improved with CPAP (mean RSI, 22.0-9.5; P = .002); however, the VAS, VHI-10, and SNQ did not change after 6 months of CPAP therapy. In a small sample size, patient-reported voice outcomes (VHI-10) and other upper aerodigestive tract symptoms did not worsen with CPAP; rather, CPAP therapy was associated with a reduction in reflux symptoms.
Bartlett, S.J.; Barbic, S.P.; Bykerk, V.P.; Choy, E.H.; Alten, R.; Christensen, R.; Broeder, A. den; Fautrel, B.; Furst, D.E.; Guillemin, F.; Hewlett, S.; Leong, A.L.; Lyddiatt, A.; March, L.; Montie, P.; Pohl, C.; Voshaar, M.; Woodworth, T.G.; Bingham, C.O.
OBJECTIVE: The Outcome Measures in Rheumatology (OMERACT) Rheumatoid Arthritis (RA) Flare Group was established to develop a reliable way to identify and measure RA flares in randomized controlled trials (RCT). Here, we summarized the development and field testing of the RA Flare Questionnaire
Paloma-Castro, Olga; Romero-Sánchez, José Manuel; Paramio-Cuevas, Juan Carlos; Pastor-Montero, Sonia María; Del Carmen Sánchez-Dalda, María; Rozadillas-Sanmiguel, Elena; Moreno-Corral, Luis Javier
To develop and psychometrically evaluate a questionnaire based on the outcome "Knowledge: Breast-feeding" of the Nursing Outcomes Classification (NOC) to determine the knowledge of parents on breast-feeding. The NOC outcome "Knowledge: Breast-feeding" allows for nurses/midwives to assess the efficacy of interventions aimed to improve the knowledge on breast-feeding in parents thought the clinical interview/observation. However, the use of self-administered questionnaires by patients could facilitate its evaluation. Two-phased study: (1) Development of the questionnaire based on experts' opinions; (2) Methodological design to assess its psychometric properties. The availability of tools that enable the determination of the knowledge of patients would facilitate nurses/midwives to set objectives, individualize interventions, and measure their effectiveness. © 2015 NANDA International, Inc.
Cammack, Alison L; Hogue, Carol J; Drews-Botsch, Carolyn D; Kramer, Michael R; Pearce, Brad D; Knight, Bettina; Stowe, Zachary N; Newport, D Jeffrey
Childhood maltreatment is common and has been increasingly studied in relation to perinatal outcomes. While retrospective self-report is convenient to use in studies assessing the impact of maltreatment on perinatal outcomes, it may be vulnerable to bias. We assessed bias in reporting of maltreatment with respect to women's experiences of adverse perinatal outcomes in a cohort of 230 women enrolled in studies of maternal mental illness. Each woman provided a self-reported history of childhood maltreatment via the Childhood Trauma Questionnaire at two time points: 1) the preconception or prenatal period and 2) the postpartum period. While most women's reports of maltreatment agreed, there was less agreement for physical neglect among women experiencing adverse perinatal outcomes. Further, among women who discrepantly reported maltreatment, those experiencing adverse pregnancy outcomes tended to report physical neglect after delivery but not before, and associations between physical neglect measured after delivery and adverse pregnancy outcomes were larger than associations that assessed physical neglect before delivery. There were larger associations between post-delivery measured maltreatment and perinatal outcomes among women who had not previously been pregnant and in those with higher postpartum depressive symptoms. Although additional larger studies in the general population are necessary to replicate these findings, they suggest retrospective reporting of childhood maltreatment, namely physical neglect, may be prone to systematic differential recall bias with respect to perinatal outcomes. Measures of childhood maltreatment reported before delivery may be needed to validly estimate associations between maternal exposure to childhood physical neglect and perinatal outcomes. Copyright © 2018 Elsevier Ltd. All rights reserved.
Barbosa, Taís de Souza; Gavião, Maria Beatriz Duarte
To test the validity and reliability of Brazilian Portuguese version of the Parental-Caregiver Perceptions Questionnaire (P-CPQ) (Aim 1) and to assess the agreement between parents and children concerning the child's oral health-related quality of life (OHRQoL) (Aim 2). The P-CPQ and the Brazilian Portuguese versions of the Child Perceptions Questionnaires (CPQ8-10 and CPQ11-14 ) were used. Objective 1 addressed in the study that involved 210 (validity and internal reliability) and 20 (test-retest reliability) parents and Objective 2 in the study that involved 210 pairs of parents and children. Construct validity was calculated using the Spearman's correlation and the Mann-Whitney/Kruskal-Wallis tests. Reliability was determined using Cronbach's alpha and intraclass correlation coefficient (ICC). Agreement between overall and subscale scores derived from the P-CPQ and CPQ was assessed in comparison and correlation analyses. The P-CPQ discriminated among the categories of malocclusion and dmft. The P-CPQ showed good construct validity, good internal consistency reliability, and excellent test-retest reliability. There was systematic under- and overreporting in parents' assessments for younger and older children, respectively. However, the magnitude of the directional differences was just small. At individual level, agreement between parents and children was excellent. However, it ranged from excellent to moderate or substantial in subscales for CPQ8-10 and CPQ11-14 groups, respectively. The Portuguese version of P-CPQ is valid and reliable. Some parents have limited knowledge about child OHRQoL. Given that parental and child reports measure different realities concerning the child's OHRQoL, information provided by parents can complement the child's evaluation. © 2015 American Association of Public Health Dentistry.
Alfonsson, Sven; Maathz, Pernilla; Hursti, Timo
Research on Internet-based interventions typically use digital versions of pen and paper self-report symptom scales. However, adaptation into the digital format could affect the psychometric properties of established self-report scales. Several studies have investigated differences between digital and pen and paper versions of instruments, but no systematic review of the results has yet been done. This review aims to assess the interformat reliability of self-report symptom scales used in digital or online psychotherapy research. Three databases (MEDLINE, Embase, and PsycINFO) were systematically reviewed for studies investigating the reliability between digital and pen and paper versions of psychiatric symptom scales. From a total of 1504 publications, 33 were included in the review, and interformat reliability of 40 different symptom scales was assessed. Significant differences in mean total scores between formats were found in 10 of 62 analyses. These differences were found in just a few studies, which indicates that the results were due to study effects and sample effects rather than unreliable instruments. The interformat reliability ranged from r=.35 to r=.99; however, the majority of instruments showed a strong correlation between format scores. The quality of the included studies varied, and several studies had insufficient power to detect small differences between formats. When digital versions of self-report symptom scales are compared to pen and paper versions, most scales show high interformat reliability. This supports the reliability of results obtained in psychotherapy research on the Internet and the comparability of the results to traditional psychotherapy research. There are, however, some instruments that consistently show low interformat reliability, suggesting that these conclusions cannot be generalized to all questionnaires. Most studies had at least some methodological issues with insufficient statistical power being the most common issue
Saint-Maurice, Pedro F; Welk, Gregory J; Beyler, Nicholas K; Bartee, Roderick T; Heelan, Kate A
The utility of self-report measures of physical activity (PA) in youth can be greatly enhanced by calibrating self-report output against objectively measured PA data.This study demonstrates the potential of calibrating self-report output against objectively measured physical activity (PA) in youth by using a commonly used self-report tool called the Physical Activity Questionnaire (PAQ). A total of 148 participants (grades 4 through 12) from 9 schools (during the 2009-2010 school year) wore an Actigraph accelerometer for 7 days and then completed the PAQ. Multiple linear regression modeling was used on 70% of the available sample to develop a calibration equation and this was cross validated on an independent sample of participants (30% of sample). A calibration model with age, gender, and PAQ scores explained 40% of the variance in values for the percentage of time in moderate-to-vigorous PA (%MVPA) measured from the accelerometers (%MVPA = 14.56 - (sex*0.98) - (0.84*age) + (1.01*PAQ)). When tested on an independent, hold-out sample, the model estimated %MVPA values that were highly correlated with the recorded accelerometer values (r = .63) and there was no significant difference between the estimated and recorded activity values (mean diff. = 25.3 ± 18.1 min; p = .17). These results suggest that the calibrated PAQ may be a valid alternative tool to activity monitoring instruments for estimating %MVPA in groups of youth.
Küçer, Nermin; Pamukçu, Tuğba
Abstract In the last years, it has been discussed frequently whether there are any harmful effects of electromagnetic fields on human health. Electromagnetic fields are generated by several natural and man-made sources. Part of the electromagnetic spectrum called Radiofrequency is used in communication systems such as mobile (cellular) phone and computer. The aim of our study was to explore different self-reported symptoms that may be associated with exposure to electromagnetic fields. This survey study was conducted, using a questionnaire, on 350 people aged +9 years in Turkey. The chi-square test was used for data analysis. Self-reported symptoms were headache, vertigo/dizziness, fatigue, forgetfulness, sleep disturbance-insomnia, tension-anxiety, joint and bone pain, lacrimation of the eyes, hearing loss and tinnitus. As a result of the survey, the study has shown that users of mobile phone and computer more often complained of headache, joint and bone pain, hearing loss, vertigo/dizziness, tension-anxiety symptoms according to time of daily usage (p < 0.05). In users of mobile phone and computer, women significantly (p < 0.05) complained more often of headache, vertigo/dizziness, fatigue, forgetfulness and tension-anxiety than men.
Botti, Mari; Khaw, Damien; Jørgensen, Emmy Brandt; Rasmussen, Bodil; Hunter, Susan; Redley, Bernice
This study investigated the cross-cultural factor stability and internal consistency of the Revised American Pain Society Patient Outcome Questionnaire (APS-POQ-R), a measure of the quality of postoperative pain management used internationally. We conducted exploratory factor analysis (EFA) of APS-POQ-R data from 2 point prevalence studies comprising 268 and 311 surveys of Danish and Australian medical-surgical patients, respectively. Parallel analysis indicated 4- and 3-factor solutions for Danish and Australian patients, respectively, which accounted for 58.1% and 52.9% of variance. Internal consistency was unsatisfactory among both Danish (Cronbach α = .54) and Australian (Cronbach α = .63) cohorts. There was a high degree of between-group similarity in item-factor loadings of variables coded as "pain experience," but not "pain management." This finding reflected cross-cultural differences in ratings of treatment satisfaction. For Danish patients, satisfaction was associated with the degree of pain severity and activity interference, whereas for Australian patients, satisfaction was associated with their perceived ability to participate in treatment. To facilitate further cross-cultural comparison, we compared our findings with past research conducted in the United States and Iceland. EFA supported the construct validity of the APS-POQ-R as a measure of "pain experience" but indicated that items measuring "pain management" may vary cross-culturally. Findings highlighted the need for further validation of the APS-POQ-R internationally. This study revealed the APS-POQ-R as a valid measure of postoperative pain experience for Danish and Australian patients. Measures of patients' perception of pain management were not robust to group differences in treatment expectations and demonstrated cross-cultural instability. Results highlighted the difficulties in establishing stable cross-cultural, cross-population subscales for the APS-POQ-R. Copyright © 2015
Kaat, Aaron J; Chen, Liang; Kazis, Lewis E; Lee, Austin F; Shapiro, Gabriel D; Sheridan, Robert L; Ryan, Colleen M; Schneider, Jeffrey C
The Shriners Hospitals for Children/American Burn Association Burn Outcomes Questionnaires (BOQ) are well-established, reliable, and valid outcome measures. The adolescent (BOQ11-18 years) and young adult version (18-30 years) have similar overlapping domains, but the scores are not comparable. This study objective was to build bridges across these forms. Datasets were from the Multi-Center Benchmarking Study Group. The comparable subscales from the BOQ11-18 and the young adult version were bridged using item response theory cocalibration. The item response theory scale scores were then transformed into an expected raw score on the alternative form, from which normative scores are available. A sensitivity analysis using up to three time points, as opposed to one randomly selected occasion, was also conducted to ensure robust results. Data were available on 353 unique adolescents and 148 young adults. The comparable subscales were successfully bridged across forms (adolescent reliability from 0.67 to 0.85; young adult from 0.69 to 0.88). Compared with adolescents, young adults on average reported more pain and itch, less symptom and role satisfaction, and poorer work/school reintegration (Cohen's d = 0.39-0.77; P family/parental concern were comparable across ages (d = -0.01 to 0.09; P > .05). Family functioning was better for young adults than adolescents (d = -0.25; P = .006). BOQ11-18 scores can be mapped from adolescence into young adulthood. Physical and psychosocial outcomes change across this life span. Bridges provide a highly useful approach to track changes across this part of the lifespan.
Larsen, Michael Due; Lose, Gunnar; Guldberg, Rikke
INTRODUCTION AND HYPOTHESIS: In order to assess the outcome following surgery for urinary incontinence (UI) and pelvic organ prolapse (POP) the importance of patient-reported outcome measures, in addition to the clinical objective measures, has been recognised. The International Consultation...... on Incontinence has initiated the development and evaluation of disease-specific questionnaires (ICIQ) to compare the patient's degree of improvement. Alternatively, the Patient's Global Impression of Improvement (PGI-I score) with an inherent before-after assessment has been widely accepted in recent studies...
Full Text Available Markus Messerli,1,2 Rebecca Aschwanden,1 Michael Buslau,2 Kurt E Hersberger,1 Isabelle Arnet1 1Pharmaceutical Care Research Group, Department of Pharmaceutical Sciences, University of Basel, Basel, Switzerland; 2European Centre for the Rehabilitation of Scleroderma, Reha Rheinfelden, Rheinfelden, Switzerland Objectives: To assess subjective swallowing difficulties (SD with medication intake and their practical consequences in patients suffering from systemic sclerosis (SSc with a novel self-report questionnaire.Design and setting: Based on a systematic literature review, we developed a self-report questionnaire and got it approved by an expert panel. Subsequently, we sent the questionnaire by post mail to SSc patients of the European Center for the Rehabilitation of Scleroderma Rheinfelden, Switzerland.Participants: Patients were eligible if they were diagnosed with SSc, treated at the center, and were of age ≥18 years at the study start.Main outcome measures: Prevalence and pattern of SD with oral medication intake, including localization and intensity of complaints.Results: The questionnaire consisted of 30 items divided into five sections Complaints, Intensity, Localization, Coping strategies, and Adherence. Of the 64 SSc patients eligible in 2014, 43 (67% returned the questionnaire. Twenty patients reported SD with medication intake (prevalence 47%, either currently (11; 26% or in the past that had been overcome (9; 21%. Self-reported SD were localized mostly in the larynx (43% and esophagus (34%. They were of moderate (45% or strong to unbearable intensity (25%. Modification of the dosage form was reported in 40% of cases with SD. Adherence was poor for 20 (47% patients and was not associated with SD (p=0.148.Conclusion: Our novel self-report questionnaire is able to assess the pattern of complaints linked to medication intake, that is, localization and intensity. It may serve as a guide for health care professionals in selecting the most
Fleming, Padhraig S; Koletsi, Despina; Dwan, Kerry; Pandis, Nikolaos
Selective outcome reporting of either interesting or positive research findings is problematic, running the risk of poorly-informed treatment decisions. We aimed to assess the extent of outcome and other discrepancies and possible selective reporting between registry entries and published reports among leading medical journals. Randomized controlled trials published over a 6-month period from July to December 31st, 2013, were identified in five high impact medical journals: The Lancet, British Medical Journal, New England Journal of Medicine, Annals of Internal Medicine and Journal of American Medical Association were obtained. Discrepancies between published studies and registry entries were identified and related to factors including registration timing, source of funding and presence of statistically significant results. Over the 6-month period, 137 RCTs were found. Of these, 18% (n = 25) had discrepancies related to primary outcomes with the primary outcome changed in 15% (n = 20). Moreover, differences relating to non-primary outcomes were found in 64% (n = 87) with both omission of pre-specified non-primary outcomes (39%) and introduction of new non-primary outcomes (44%) common. No relationship between primary or non-primary outcome change and registration timing (prospective or retrospective; P = 0.11), source of funding (P = 0.92) and presence of statistically significant results (P = 0.92) was found. Discrepancies between registry entries and published articles for primary and non-primary outcomes were common among trials published in leading medical journals. Novel approaches are required to address this problem.
McCormick, Ernest J.; And Others
The study deals with the job component method of establishing compensation rates. The basic job analysis questionnaire used in the study was the Position Analysis Questionnaire (PAQ) (Form B). On the basis of a principal components analysis of PAQ data for a large sample (2,688) of jobs, a number of principal components (job dimensions) were…
Maguin, Eugene; Nochajski, Thomas; Dewit, David; Safyer, Andrew
The purpose of the present study was to comprehensively examine the validity of an adapted version of the parent global report form of the Alabama Parenting Questionnaire (APQ) with respect to its factor structure, relationships with demographic and response style covariates, and differential item functioning (DIF). The APQ was adapted by omitting the Corporal Punishment and the other discipline items. The sample consisted of 674 Canadian and United States families having a 9–12 year old child and at least one parent-figure who had received treatment within the past five years for alcohol problems or met criteria for alcohol abuse or dependence. The primary parent in each family completed the APQ. The four factor CFA model of the four published scales used and the three factor CFA model of those scales from prior research were rejected. Exploratory structural equation modeling was then used. The final three factor model combined the author-defined Involvement and Positive Parenting scales and retained the original Poor Monitoring/Supervision and Inconsistent Discipline scales. However, there were substantial numbers of moderate magnitude cross-loadings and large magnitude residual covariances. Differential item functioning (DIF) was observed for a number of APQ items. Controlling for DIF, response style and demographic variables were related significantly to the factors. PMID:26348028
Maguin, Eugene; Nochajski, Thomas H; De Wit, David J; Safyer, Andrew
The purpose of the present study was to comprehensively examine the validity of an adapted version of the parent global report form of the Alabama Parenting Questionnaire (APQ) with respect to its factor structure, relationships with demographic and response style covariates, and differential item functioning (DIF). The APQ was adapted by omitting the corporal punishment and the other discipline items. The sample consisted of 674 Canadian and United States families having a 9- to 12-year-old child and at least 1 parent figure who had received treatment within the past 5 years for alcohol problems or met criteria for alcohol abuse or dependence. The primary parent in each family completed the APQ. The 4-factor CFA model of the 4 published scales used and the 3-factor CFA model of those scales from prior research were rejected. Exploratory structural equation modeling was then used. The final 3-factor model combined the author-defined Involvement and Positive Parenting scales and retained the original Poor Monitoring/Supervision and Inconsistent Discipline scales. However, there were substantial numbers of moderate magnitude cross-loadings and large magnitude residual covariances. Differential item functioning (DIF) was observed for a number of APQ items. Controlling for DIF, response style and demographic variables were related significantly to the factors. (PsycINFO Database Record (c) 2016 APA, all rights reserved).
Dimoliatis, Ioannis D. K.; Lyrakos, Georgios N.; Tseretopoulou, Xanthippi; Tzamalis, Theodoros; Bazoukis, George; Benos, Alexis; Gogos, Charalambos; Malizos, Konstantinos; Pneumatikos, Ioannis; Thermos, Kyriaki; Kaldoudi, Eleni; Tzaphlidou, Margaret; Papadopoulos, Iordanis N.; Jelastopulu, Eleni
The Tuning-Medicine Project produced a set of "level one" and "level two" learning outcomes/competences to be met by European medical graduates. In the learner-centered era self-assessment becomes more and more important. Our aim was to develop a self-completion questionnaire ("iCAN!") evaluating graduates' learning…
Full Text Available Reflective functioning or mentalizing is the capacity to interpret both the self and others in terms of internal mental states such as feelings, wishes, goals, desires, and attitudes. This paper is part of a series of papers outlining the development and psychometric features of a new self-report measure, the Reflective Functioning Questionnaire (RFQ, designed to provide an easy to administer self-report measure of mentalizing. We describe the development and initial validation of the RFQ in three studies. Study 1 focuses on the development of the RFQ, its factor structure and construct validity in a sample of patients with Borderline Personality Disorder (BPD and Eating Disorder (ED (n = 108 and normal controls (n = 295. Study 2 aims to replicate these findings in a fresh sample of 129 patients with personality disorder and 281 normal controls. Study 3 addresses the relationship between the RFQ, parental reflective functioning and infant attachment status as assessed with the Strange Situation Procedure (SSP in a sample of 136 community mothers and their infants. In both Study 1 and 2, confirmatory factor analyses yielded two factors assessing Certainty (RFQ_C and Uncertainty (RFQ_U about the mental states of self and others. These two factors were relatively distinct, invariant across clinical and non-clinical samples, had satisfactory internal consistency and test-retest stability, and were largely unrelated to demographic features. The scales discriminated between patients and controls, and were significantly and in theoretically predicted ways correlated with measures of empathy, mindfulness and perspective-taking, and with both self-reported and clinician-reported measures of borderline personality features and other indices of maladaptive personality functioning. Furthermore, the RFQ scales were associated with levels of parental reflective functioning, which in turn predicted infant attachment status in the SSP. Overall, this study lends
Douwes, M.; Kraker, H.de; Blatter, B.M.
A long duration of computer use is known to be positively associated with Work Related Upper Extremity Disorders (WRUED). Self-report by questionnaire is commonly used to assess a worker's duration of computer use. The aim of the present study was to assess the validity of self-report and computer
McCormick, Ernest J.; And Others
The Position Analysis Questionnaire (PAQ), a structured job analysis questionnaire that provides for the analysis of individual jobs in terms of each of 187 job elements, was used to establish the job component validity of certain commercially-available vocational aptitude tests. Prior to the general analyses reported here, a statistical analysis…
Full Text Available Introduction: The pathogen of multivisceral echinococcosis is the same agent as for single-organ echinococcosis: Echinococcus granulosus.According to the consensus of experts under the aegis of the WHO-IWGE - WHO-Informal Working Group on Echinococcosis options of treatment should be: (1 percutaneous treatment, (2 surgery, (3 anti-infective drug treatment or (4 watch and waitapproach or combinations thereof. Case report: The presented case was a seven-year-old Caucasian boy, a permanent resident of rural region near Tuzla, Bosnia and Herzegovina, who had a history of asymptomatic giant liver and small lung hydatid cyst (multivisceral echinococcosis. We consider that the patient was in the phase of secondary hydatidosis even before undergoing the first treatment PAIR method of liver and continued with adjunctive chemotherapy. Two weeks after discharge, during the adjunctive chemotherapy he had one of possible complication where pre-existed smal lung hydatid cyst gotinflamed and performed an abscess massand potential septic risk, which required surgical and antibiotic treatment. Surgery and early postoperative course were normal and the patient was discharged with recommendation to continue with previously started adjunctive chemotherapy (Albendazol according to treatment protocol. Conclusion: Most infected persons are asymptomatic and clinical manifestations vary according to the anatomic location of the cyst, so we want to indicate the importance of routine ultrasound screening of preschool children, and eventually X ray chest scan.This case report highlights the necessity of caution with choosing appropriate treatment, even though size of cyst can be irrelevant to take surgical treatment in first line instead of medical therapy.
To examine how changes in outcomes are reported in drug advertisements in medical journals. Advertisements from a convenience sample of 38 issues of Canadian Family Physician, Canadian Journal of Anaesthesia, Canadian Journal of Psychiatry, Canadian Medical Association Journal, and the New England Journal of Medicine. Method of reporting changes in clinical outcomes (relative risk reduction [RRR], absolute risk reduction [ARR], number needed to treat [NNT]), name of product, and company marketing product were sought. In the 22 advertisements included in the analysis, 11 reported results as RRRs; two reported results as RRRs, but readers could calculate ARRs or NNTs from figures given in the advertisement; and nine gave no measure of results, but readers could calculate RRRs, ARRs, or NNTs from figures given. Most companies report changes in outcomes as RRRs, and this bias could influence the way physicians prescribe. Changes to the rules governing journal advertising and increased emphasis on critical appraisal skills would help mitigate this bias.
Hinarejos, Pedro; Ferrer, Tulia; Leal, Joan; Torres-Claramunt, Raul; Sánchez-Soler, Juan; Monllau, Joan Carles
The main objective of this study was to analyse the outcomes after total knee arthroplasty (TKA) of a group of patients with at least one self-reported allergy and a group of patients without reported allergies. We hypothesized there is a significant negative influence on clinical outcome scores after TKA in patients with self-reported allergies. Four-hundred and seventy-five patients who had undergone TKA were analysed preoperatively and 1 year after surgery. The WOMAC, KSS and SF-36 scores were obtained. The patients' Yesavage depression questionnaire score was also recorded. The scores of the 330 (69.5 %) patients without self-reported allergies were compared to the scores of the 145 (30.5 %) patients with at least one self-reported allergy in the medical record. Preoperative scores were similar in both groups. The WOMAC post-operative scores (23.6 vs 20.4; p = 0.037) and the KSS-Knee score (91.1 vs 87.6; p = 0.027) were worse in the group of patients with self-reported allergies than in the group without allergies. The scores from the Yesavage depression questionnaire and in the SF-36 were similar in both groups. Patients with at least one self-reported allergy have worse post-operative outcomes in terms of the WOMAC and KSS-Knee scores after TKA than patients without allergies. These poor outcomes do not seem to be related to depression. Therefore, more research is needed to explain them. Reported allergies could be considered a prognostic factor and used when counselling TKA patients. I.
The present 3rd survey was aimed at grasping safety control in nuclear medicine examination and the trend for SPECT usage. Questionnaires were sent to 1238 facilities dealing with nuclear medicine; and 1127 facilities (91.0%) responded. The survey period was three years from April 1, 1989 through March 31, 1992. The following 7 items were surveyed: (1) nuclear medicine personnel, (2) nuclear medicine equipments, (3) accidents occurring in nuclear medicine laboratories, (4) risk factors leading to accidents, (5) countermeasures for improving safety control, (6) major breakdown of the machinery and equipment, and (7) demands for makers. Majority of nuclear medicine personnel were male and were less than 50 years old. The number of SPECT equipments increased from 714 in the previous survey to 968. Accidents (personal injuries) and narrow escape from an accident were seen in 45 and 154 cases. Personal injuries such as falling occurred in 37 patients and 8 nuclear medicine personnel. According to nuclear medicine examinations, SPECT was the most common examination associated with accident and narrow escape cases (86/199). Such cases at the beginning of examination were remarkably decreased, as compared with those in the previous two surveys. Accidents were primarily attributable to careless management by personnel. Breakdown of the machinery and equipment was reported in 207 cases. In Item 5, the following contents were presented: heads for examination, personnel's behavior, education, examination equipments, collimators and others. Finally, contents in Item 7 included: equipment design, heads for examination, maintenance or management, data processing, collimators, examination equipments and others. (N.K.)
Rinkel, R N P M; Verdonck-de Leeuw, I M; van den Brakel, N; de Bree, R; Eerenstein, S E J; Aaronson, N; Leemans, C R
To validate questionnaires on voice, speech, and swallowing among laryngeal cancer patients, to assess the need for and use of rehabilitation services, and to determine the association between voice, speech, and swallowing problems, and quality of life and distress. Laryngeal cancer patients at least three months post-treatment completed the VHI (voice), SHI (speech), SWAL-QOL (swallowing), EORTC QLQ-C30, QLQ-HN35, HADS, and study-specific questions on rehabilitation. Eighty-eight patients and 110 healthy controls participated. Cut off scores of 15, 6, and 14 were defined for the VHI, SHI, and SWAL-QOL (sensitivity > 90%; specificity > 80%). Based on these scores, 56% of the patients reported voice, 63% speech, and 54% swallowing problems. VHI, SHI, and SWAL-QOL scores were associated significantly with quality of life (EORTC QLQ-C30 global quality of life scale) (r = .43 (VHI and SHI) and r = .46 (SWAL-QOL)) and distress (r = .50 (VHI and SHI) and r = .58 (SWAL-QOL)). In retrospect, 32% of the patients indicated the need for rehabilitation at time of treatment, and 81% of these patients availed themselves of such services. Post-treatment, 8% of the patients expressed a need for rehabilitation, and 20% of these patients actually made use of such services. Psychometric characteristics of the VHI, SHI, and SWAL-QOL in laryngeal cancer patients are good. The prevalence of voice, speech, and swallowing problems is high, and clearly related to quality of life and distress. Although higher during than after treatment, the perceived need for and use of rehabilitation services is limited. Copyright © 2014 Elsevier Ltd. All rights reserved.
Chi Ming Leung
Full Text Available Bipolar II (BP-II depression is often misdiagnosed as unipolar (UP depression, resulting in suboptimal treatment. Tools for differentiating between these two types of depression are lacking. This study aimed to develop a simple, self-report screening instrument to help distinguish BP-II depression from UP depressive disorder. A prototype BP-II depression questionnaire (BPIIDQ-P was constructed following a literature review, panel discussions and a field trial. Consecutively assessed patients with a diagnosis of depressive disorder or BP with depressive episodes completed the BPIIDQ-P at a psychiatric outpatient clinic in Hong Kong between October and December 2013. Data were analyzed using discriminant analysis and logistic regression. Of the 298 subjects recruited, 65 (21.8% were males and 233 (78.2% females. There were 112 (37.6% subjects with BP depression [BP-I = 42 (14.1%, BP-II = 70 (23.5%] and 182 (62.4% with UP depression. Based on family history, age at onset, postpartum depression, episodic course, attacks of anxiety, hypersomnia, social phobia and agoraphobia, the 8-item BPIIDQ-8 was constructed. The BPIIDQ-8 differentiated subjects with BP-II from those with UP depression with a sensitivity/specificity of 0.75/0.63 for the whole sample and 0.77/0.72 for a female subgroup with a history of childbirth. The BPIIDQ-8 can differentiate BP-II from UP depression at the secondary care level with satisfactory to good reliability and validity. It has good potential as a screening tool for BP-II depression in primary care settings. Recall bias, the relatively small sample size, and the high proportion of females in the BP-II sample limit the generalization of the results.
Potter, S; Brigic, A; Whiting, P F; Cawthorn, S J; Avery, K N L; Donovan, J L; Blazeby, J M
Breast reconstruction after mastectomy for cancer requires accurate evaluation to inform evidence-based participatory decision making, but the standards of outcome reporting after breast reconstruction have not previously been considered. We used extensive searches to identify articles reporting surgical outcomes of breast reconstruction. We extracted data using published criteria for complication reporting modified to reflect reconstructive practice. Study designs included randomized controlled trials, cohort studies, and case series. The Cochrane Risk of Bias tool was used to critically appraise all study designs. Other criteria used to assess the studies were selection and funding bias, statistical power calculations, and institutional review board approval. Wilcoxon signed rank tests were used to compare the breadth and frequency of study outcomes, and χ² tests were used to compare the number of studies in each group reporting each of the published criteria. All statistical tests were two-sided. Surgical complications following breast reconstruction in 42,146 women were evaluated in 134 studies. These included 11 (8.2%) randomized trials, 74 (55.2%) cohort studies, and 49 (36.6%) case series. Fifty-three percent of studies demonstrated a disparity between methods and results in the numbers of complications reported. Complications were defined by 87 (64.9%) studies and graded by 78 (58.2%). Details such as the duration of follow-up and risk factors for adverse outcomes were omitted from 47 (35.1%) and 58 (43.3%) studies, respectively. Overall, the studies defined fewer than 20% of the complications they reported, and the definitions were largely inconsistent. The results of this systematic review suggest that outcome reporting in breast reconstruction is inconsistent and lacks methodological rigor. The development of a standardized core outcome set is recommended to improve outcome reporting in breast reconstruction.
Liu, N; Xing, H; Zhou, M-W
-report questionnaire was developed based on several events that most patients might experience during bowel routine. 102 participants who sustained SCI within 12 months were asked to complete the questionnaire followed by an anorectal examination. Agreements of answers to the questionnaire and the physical examination......STUDY DESIGN: An observational study. OBJECTIVE: To develop a self-administered tool for assessment of sacral sparing after spinal cord injury (SCI) and to test its validity in individuals with SCI. SETTING: Peking University Third Hospital, Beijing, China. METHODS: A 5-item SCI sacral sparing self......: The validity of this questionnaire for the assessment of sacral sparing in up to 12 months post injury is good except for the motor function when there was increased AST. In some situations it could be considered as an alternative tool for digital rectal examination, especially when repeated examinations...
Nguyen, Oanh Kieu; Halm, Ethan A; Makam, Anil N
Hospitals that have robust financial performance may have improved publicly reported outcomes. To assess the relationship between hospital financial performance and publicly reported outcomes of care, and to assess whether improved outcome metrics affect subsequent hospital financial performance. Observational cohort study. Hospital financial data from the Office of Statewide Health Planning and Development in California in 2008 and 2012 were linked to data from the Centers for Medicare and Medicaid Services Hospital Compare website. Hospital financial performance was measured by net revenue by operations, operating margin, and total margin. Outcomes were 30-day risk-standardized mortality and readmission rates for acute myocardial infarction (AMI), congestive heart failure (CHF), and pneumonia (PNA). Among 279 hospitals, there was no consistent relationship between measures of financial performance in 2008 and publicly reported outcomes from 2008 to 2011 for AMI and PNA. However, improved hospital financial performance (by any of the 3 measures) was associated with a modest increase in CHF mortality rates (ie, 0.26% increase in CHF mortality rate for every 10% increase in operating margin [95% confidence interval: 0.07%-0.45%]). Conversely, there were no significant associations between outcomes from 2008 to 2011 and subsequent financial performance in 2012 (P > 0.05 for all). Robust financial performance is not associated with improved publicly reported outcomes for AMI, CHF, and PNA. Financial incentives in addition to public reporting, such as readmissions penalties, may help motivate hospitals with robust financial performance to further improve publicly reported outcomes. Reassuringly, improved mortality and readmission rates do not necessarily lead to loss of revenue. Journal of Hospital Medicine 2016;11:481-488. © 2016 Society of Hospital Medicine. © 2016 Society of Hospital Medicine.
Sasakawa, Yasuhiro; Matsumura, Yoshitaka; Iwasaki, Takanobu; Segawa, Hiroo; Yasuda, Sadatoshi; Kusuhara, Toshiaki
We had made reports of patient radiation exposure for doctors to judge adaptation of medical radiation rightly. By these reports the doctors can be offered data of exposure dose and somatic effect. First, we sent out questionnaires so that we grasped the doctor's understanding about radiation exposure. Consequently we understood that the doctors had demanded data of exposure dose and somatic effect. Secondly, by the result of questionnaires we made the tables of exposure dose about radiological examination. As a result we have be able to presume exposure dose about high radiation sensitive organization as concrete figures. (author)
Ni Riordain, R; McCreary, C
Oral Diseases (2013) 19, 230-235 This review aims to investigate the patient-reported outcomes currently used in the burning mouth syndrome literature and to explore whether any standardisation of such measures has taken place. Electronic databases were searched for all types of burning mouth syndrome studies using patient-reported outcome measures. Studies were selected by predefined inclusion criteria. Copies of the papers obtained were thoroughly reviewed. A study-specific data extraction form was used, allowing papers to be reviewed in a standardised manner. The initial literature search yielded a total of 173 citations, 43 of which were deemed suitable for inclusion in this study. Symptom severity and symptomatic relief were reported as a patient-reported outcome measure in 40 of the studies and quantified most commonly using a visual analogue scale. Quality of life was reported in 13 studies included in this review. Depression and/or anxiety was reported in 14 of the studies. As is evident from the variety of questionnaires and instruments used in the evaluation of the impact of burning mouth syndrome on patients' lives, no standardisation of patient outcomes has yet been achieved. © 2012 John Wiley & Sons A/S.
significant difference emerged on patient-centeredness between male and female outpatients.Conclusion: The HSOPE questionnaire seemed to be a tool with high acceptability and excellent psychometric properties to measure patient-centeredness as a unidimensional construct. Limitations and implications for future research are discussed.Keywords: patient-centered care, health care services, psychometric properties, patient-reported outcomes
Jones, Salene M W; Lange, Jane; Turner, Judith; Cherkin, Dan; Ritenbaugh, Cheryl; Hsu, Clarissa; Berthoud, Heidi; Sherman, Karen
Patient expectations may be associated with outcomes of complementary and alternative medicine (CAM) treatments for chronic pain. However, a psychometrically sound measure of such expectations is needed. The purpose of this study was to develop and evaluate a questionnaire to assess individuals' expectations regarding outcomes of CAM treatments for chronic low back pain (CLBP), as well as a short form of the questionnaire. An 18-item draft questionnaire was developed through literature review, cognitive interviews with individuals with CLBP, CAM practitioners, and expert consultation. Two samples completed the questionnaire: (1) a community sample (n = 141) completed it via an online survey before or soon after starting a CAM treatment for CLBP, and (2) participants (n = 181) in randomized clinical trials evaluating CAM treatments for CLBP or fibromyalgia completed it prior to or shortly after starting treatment. Factor structure, internal consistency, test-retest reliability, and criterion validity were examined. Based on factor analyses, 10 items reflecting expectations (used to create a total score) and three items reflecting hopes (not scored) were selected for the questionnaire. The questionnaire had high internal consistency, moderate test-retest reliability, and moderate correlations with other measures of expectations. A three-item short form also had adequate reliability and validity. The Expectations for Complementary and Alternative Medicine Treatments (EXPECT) questionnaire can be used in research to assess individuals' expectations of treatments for chronic pain. It is recommended that the three hope questions are included (but not scored) to help respondents distinguish between hopes and expectations. The short form may be appropriate for clinical settings and when expectation measurement is not a primary focus.
Laursen, Ditte Hjorth; Christensen, Karl Bang; Christensen, Ulla; Frølich, Anne
Type 2 diabetes is a progressive chronic illness that will affect more than 500 million people worldwide by 2030. It is a significant cause of morbidity and mortality. Finding the right care management for diabetes patients is necessary to effectively address the growing population of affected individuals and escalating costs. Patient education is one option for improving patient self-management. However, there are large discrepancies in the outcomes of such programs and long-term data are lacking. We assessed the short and long-term outcomes of diabetes patient education using the health education impact questionnaire (HeiQ). We conducted a observational cohort study of 83 type 2 diabetes patients participating in patient education programs in Denmark. The seven-scale HeiQ was completed by telephone interview at baseline and 2 weeks (76 participants, 93%) and 12 months (66, 80%) after the patient education ended. Changes over time were assessed using mean values and standard deviation at each time point and Cohen effect sizes. Patients reported improvements 2 weeks after the program ended in 4 of 7 constructs: skills and technique acquisition (ES = 0.59), self-monitoring and insight (ES = 0.52), constructive attitudes and approaches (ES = 0.43) and social integration and support (ES = 0.27). After 12 months, patients reported improvements in 3 of 7 constructs: skills and technique acquisition (ES = 0.66), constructive attitudes and approaches (ES = 0.43), and emotional wellbeing (ES = 0.44). Skills and technique showed the largest short- and long-term effect size. No significant changes were found in health-related activity or positive and active engagement in life over time. After 12 months, diabetes patients who participated in patient education demonstrated increased self-management skills, improved acceptance of their chronic illness and decreased negative emotional response to their disease. Applying HeiQ as an outcome measure yielded new
Astrand, R; Rolstad, S; Wallin, A
The Cognitive Impairment Questionnaire (CIMP-QUEST) is an instrument based on information obtained by key informants to identify symptoms of dementia and dementia-like disorders. The questionnaire consists of three subscales reflecting impairment in parietal-temporal (PT), frontal (F) and subcortical (SC) brain regions. The questionnaire includes a memory scale and lists non-cognitive symptoms. The reliability and validity of the questionnaire were examined in 131 patients with mild cognitive impairment (MCI) or mild dementia at a university-based memory unit. Cronbach alpha for all subscales was calculated at r = 0.90. Factor analysis supported the tri-dimensionality of CIMP-QUEST's brain region-oriented construct. Test-retest reliability for a subgroup of cognitively stable MCI-patients (n = 25) was found to be r = 0.83 (P = 0.0005). The correlation between the score on the cognitive subscales (PT + F + M) and Informant Questionnaire on Cognitive Decline in the Elderly was r = 0.83 (P = 0.0005, n = 123). The memory subscale correlated significantly with episodic memory tests, the PT subscale with visuospatial and language-oriented tests, and the SC and F subscales with tests of attention, psychomotor tempo and executive function. CIMP-QUEST has high reliability and validity, and provides information about cognitive impairment and brain region-oriented symptomatology in patients with MCI and mild dementia.
van der Wal, Martha A; Scheele, Fedde; Schönrock-Adema, Johanna; Jaarsma, A Debbie C; Cohen-Schotanus, Janke
Within the current health care system, leadership is considered important for physicians. leadership is mostly self-taught, through observing and practicing. Does the practice environment offer residents enough opportunities to observe the supervisor leadership behaviours they have to learn? In the current study we investigate which leadership behaviours residents observe throughout their training, which behaviours supervisors report to display and whether residents and supervisors have a need for more formal training. We performed two questionnaire studies. Study 1: Residents (n = 117) answered questions about the extent to which they observed four basic and observable Situational Leadership behaviours in their supervisors. Study 2: Supervisors (n = 201) answered questions about the extent to which they perceived to display these Situational Leadership behaviours in medical practice. We asked both groups of participants whether they experienced a need for formal leadership training. One-third of the residents did not observe the four basic Situational Leadership behaviours. The same pattern was found among starting, intermediate and experienced residents. Moreover, not all supervisors showed these 4 leadership behaviours. Both supervisors and residents expressed a need for formal leadership training. Both findings together suggest that current practice does not offer residents enough opportunities to acquire these leadership behaviours by solely observing their supervisors. Moreover, residents and supervisors both express a need for more formal leadership training. More explicit attention should be paid to leadership development, for example by providing formal leadership training for supervisors and residents.
Shisler, Robert; Sinnott, Jennifer A; Wang, Vivian; Hebert, Courtney; Salani, Ritu; Felix, Ashley S
Women with endometrial cancer (EC) are the second largest population of female cancer survivors in the United States. However, the outcomes of EC survivors, from the patient perspective, are not well-understood. Therefore, we conducted a systematic review of patient-reported outcomes (PROs) following an EC diagnosis. We searched MEDLINE, EMBASE, Scopus, CINAHL, and reference lists to identify published observational studies that examined PROs among women with EC. Reviewers independently reviewed eligible full-text study articles and conducted data extraction. We qualitatively summarized included articles according to exposures [e.g. body mass index (BMI), treatment, etc.] or specific PROs (e.g. sexual function). Of 1722 unique studies, 102 full-text articles were reviewed, of which a total of 27 studies fulfilled the inclusion criteria. The most commonly used PRO questionnaires were the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30) (n=9), Short Form 36 Questionnaire (SF-36, n=8), the Functional Assessment of Cancer Therapy-General (FACT-G, n=5), and the Female Sexual Function Index (FSFI, n=4). Obesity was associated with lower quality of life (QOL) and physical functioning. Treatment type affected several outcomes. Laparoscopy generally resulted in better QOL outcomes than laparotomy. Likewise, vaginal brachytherapy was associated with better outcomes compared to external beam radiation. Sexual function outcomes were dependent on age, time since diagnosis, and having consulted a physician before engaging in sexual activities. In addition, a physical activity intervention was associated with improved sexual interest but not sexual function. Our review provides insight into the experience of EC survivors from the patient perspective. Factors that contribute to QOL, such as pain, fatigue, emotional and social functioning, should be monitored following an EC diagnosis. Copyright © 2017 Elsevier Inc
Petkovic, Jennifer; Epstein, Jonathan; Buchbinder, Rachelle; Welch, Vivian; Rader, Tamara; Lyddiatt, Anne; Clerehan, Rosemary; Christensen, Robin; Boonen, Annelies; Goel, Niti; Maxwell, Lara J; Toupin-April, Karine; De Wit, Maarten; Barton, Jennifer; Flurey, Caroline; Jull, Janet; Barnabe, Cheryl; Sreih, Antoine G; Campbell, Willemina; Pohl, Christoph; Duruöz, Mehmet Tuncay; Singh, Jasvinder A; Tugwell, Peter S; Guillemin, Francis
The goal of the Outcome Measures in Rheumatology (OMERACT) 12 (2014) equity working group was to determine whether and how comprehensibility of patient-reported outcome measures (PROM) should be assessed, to ensure suitability for people with low literacy and differing cultures. The English, Dutch, French, and Turkish Health Assessment Questionnaires and English and French Osteoarthritis Knee and Hip Quality of Life questionnaires were evaluated by applying 3 readability formulas: Flesch Reading Ease, Flesch-Kincaid grade level, and Simple Measure of Gobbledygook; and a new tool, the Evaluative Linguistic Framework for Questionnaires, developed to assess text quality of questionnaires. We also considered a study assessing cross-cultural adaptation with/without back-translation and/or expert committee. The results of this preconference work were presented to the equity working group participants to gain their perspectives on the importance of comprehensibility and cross-cultural adaptation for PROM. Thirty-one OMERACT delegates attended the equity session. Twenty-six participants agreed that PROM should be assessed for comprehensibility and for use of suitable methods (4 abstained, 1 no). Twenty-two participants agreed that cultural equivalency of PROM should be assessed and suitable methods used (7 abstained, 2 no). Special interest group participants identified challenges with cross-cultural adaptation including resources required, and suggested patient involvement for improving translation and adaptation. Future work will include consensus exercises on what methods are required to ensure PROM are appropriate for people with low literacy and different cultures.
Marcel G. M. Olde Rikkert
Full Text Available Introduction: Patient reported outcome measures (PROMs have been introduced as standardised outcomes, but have not been implemented widely for disease targeted pathways of care, nor for geriatric patients who prefer functional performance and quality of life. Discussion: We describe innovative multipurpose implementation of PROMs as evidenced by two best practices of PROMs application in geriatric and physiotherapy practice. We show that PROMs can show meaningful outcomes in older subjects’ patient journeys, which can at the same time serve individuals and groups of both patients and professionals. Key lesson: PROMs can deliver generic outcomes relevant for older patients, may improve patient-physician relationship, quality of care and prediction of future outcomes in geriatric care, if they are valid, reliable and responsive, but still short and simple. A precondition to make the hard tip from research to practice is that PROMs are carefully positioned in the clinical encounters and in electronic health records.
Doward Lynda C
Full Text Available Abstract The use of patient reported outcome scales in clinical trials conducted by the pharmaceutical industry has become more widespread in recent years. The use of such outcomes is particularly common for products developed to treat chronic, disabling conditions where the intention is not to cure but to ameliorate symptoms, facilitate functioning or, ultimately, to improve quality of life. In such cases, patient reported evidence is increasingly viewed as an essential complement to traditional clinical evidence for establishing a product's competitive advantage in the marketplace. In a commercial setting, the value of patient reported outcomes is viewed largely in terms of their potential for securing a labelling claim in the USA or inclusion in the summary of product characteristics in Europe. Although, the publication of the recent US Food and Drug Administration guidance makes it difficult for companies to make claims in the USA beyond symptom improvements, the value of these outcomes goes beyond satisfying requirements for a label claim. The European regulatory authorities, payers both in the US and Europe, clinicians and patients all play a part in determining both the availability and the pricing of medicinal products and all have an interest in patient-reported data that go beyond just symptoms. The purpose of the current paper is to highlight the potential added value of patient reported outcome data currently collected and held by the industry for these groups.
For the VIEWLS project an internet-based questionnaire on biofuels was distributed among a large group of stakeholders in the European Union, Accession Countries and the Americas in the second half of 2003. The purpose of the questionnaire was to collect information on stakeholders' opinion on biofuel related topics including the future potential of biofuels and drivers and barriers for the market introduction. Here the main results are presented. The results should only be regarded as indicative because no detailed statistical analysis was performed due to the difference in representation from different countries and stakeholder groups. (au)
For the VIEWLS project an internet-based questionnaire on biofuels was distributed among a large group of stakeholders in the European Union, Accession Countries and the Americas in the second half of 2003. The purpose of the questionnaire was to collect information on stakeholders' opinion on biofuel related topics including the future potential of biofuels and drivers and barriers for the market introduction. Here the main results are presented. The results should only be regarded as indicative because no detailed statistical analysis was performed due to the difference in representation from different countries and stakeholder groups
Cancela Carral, José María; Lago Ballesteros, Joaquín; Ayán Pérez, Carlos; Mosquera Morono, María Belén
To analyse the reliability and validity of the Weekly Activity Checklist (WAC), the One Week Recall (OWR), and the Godin-Shephard Leisure Time Exercise Questionnaire (GLTEQ) in Spanish adolescents. A total of 78 adolescents wore a pedometer for one week, filled out the questionnaires at the end of this period and underwent a test to estimate their maximal oxygen consumption (VO2max). The reliability of the questionnaires was determined by means of a factor analysis. Convergent validity was obtained by comparing the questionnaires' scores against the amount of physical activity quantified by the pedometer and the VO2max reported. The questionnaires showed a weak internal consistency (WAC: α=0.59-0.78; OWR: α=0.53-0.73; GLTEQ: α=0.60). Moderate statistically significant correlations were found between the pedometer and the WAC (r=0.69; p questionnaires analysed, the WAC showed the best psychometric performance as it was the only one with respectable convergent validity, while sharing low reliability with the OWR and the GLTEQ. Copyright © 2016 SESPAS. Publicado por Elsevier España, S.L.U. All rights reserved.
Loza, Wagdy; Loza-Fanous, Amel; Heseltine, Karen
Two studies were conducted to investigate the vulnerability of the Self-Appraisal Questionnaire (SAQ) to deception and self-presentation biases. The SAQ is a self-report measure used to predict recidivism and guide institutional and program assignments. In the first study, comparisons were made between 429 volunteer offenders who completed the SAQ…
McCormick, Ernest J.
The Position Analysis Questionnaire (PAQ) is a job analysis instrument consisting of 187 job elements organized into six divisions. The PAQ was used in the eight studies summarized in this final report. The studies were: (1) ratings of the attribute requirements of PAQ job elements, (2) a series of principal components analyses of these attribute…
Boonstra, Nynke; Wunderink, Lex; Sytema, Sjoerd; Wiersma, Durk
Objective: To examine the utility of the Community Assessment of Psychic Experiences (CAPE)-42, a self-report questionnaire, to improve detection of first-episode psychosis in new referrals to mental health services. Method: At first contact with mental health-care services patients were asked to
Yu, Lu; Winter, Sam; Xie, Dong
Boys and girls establish relatively stable gender stereotyped behavior patterns by middle childhood. Parent-report questionnaires measuring children's gender-related behavior enable researchers to conduct large-scale screenings of community samples of children. For school-aged children, two parent-report instruments, the Child Game Participation Questionnaire (CGPQ) and the Child Behavior and Attitude Questionnaire (CBAQ), have long been used for measuring children's sex-dimorphic behaviors in Western societies, but few studies have been conducted using these measures for Chinese populations. The current study aimed to empirically examine and modify the two instruments for their applications to Chinese society. Parents of 486 Chinese boys and 417 Chinese girls (6-12 years old) completed a questionnaire comprising items from the CGPQ and CBAQ, and an additional 14 items specifically related to Chinese gender-specific games. Items revealing gender differences in a Chinese sample were identified and used to construct a Child Play Behavior and Activity Questionnaire (CPBAQ). Four new scales were generated through factor analysis: a Gender Scale, a Girl Typicality Scale, a Boy Typicality Scale, and a Cross-Gender Scale (CGS). These scales had satisfactory internal reliabilities and large effect sizes for gender. The CPBAQ is believed to be a promising instrument for measuring children's gender-related behavior in China.
National Centre for Vocational Education Research (NCVER), 2010
The Longitudinal Surveys of Australian Youth (LSAY) program studies the progress of several groups of young Australians as they move from school into post-secondary education and work. This technical paper contains the questionnaire for the LSAY 2006 cohort Wave 4 (2009) data set. [For the "Longitudinal Surveys of Australian Youth (LSAY):…
National Centre for Vocational Education Research (NCVER), 2010
The Longitudinal Surveys of Australian Youth (LSAY) program studies the progress of several groups of young Australians as they move from school into post-secondary education and work. This technical paper contains the questionnaire for the LSAY 1998 cohort Wave 12 (2009) data set. [For the accompanying frequency tables, "Longitudinal Surveys…
National Centre for Vocational Education Research (NCVER), 2012
The Longitudinal Surveys of Australian Youth (LSAY) program studies the progress of several groups of young Australians as they move from school into post-secondary education and work. This series of documents provides supporting information for the LSAY data set of the 2006 cohort at wave 6 (2011). The document presents the questionnaire for LSAY…
Jellesma, F. C.; Rieffe, C.J.; Meerum Terwogt, M.
Objective: To evaluate the Somatic Complaint List (SCL) in children. Method: At T1, 365 fourth and 352 fifth graders completed the SCL, the Children's Somatization Inventory (CSI-C), and the Mood Questionnaire. Parents (n=564) completed the parental form of the CSI-C (CSI-P). Six months later, the
In this questionnaire, several scenarios are described where cooperation is required to find out whether or not there is a risk of fraud and error. For each scenario, some questions are asked. In addition, the questionnaire contains some general questions allowing to find out which steps social
Full Text Available Internalized weight stigma has gained growing interest due to its association with multiple health impairments in individuals with obesity. Especially high internalized weight stigma is reported by individuals undergoing bariatric surgery. For assessing this concept, two different self-report questionnaires are available, but have never been compared: the Weight Self-Stigma Questionnaire (WSSQ and the Weight Bias Internalization Scale (WBIS. The purpose of the present study was to provide and to compare reliability, convergent validity with and predictive values for psychosocial health outcomes for the WSSQ and WBIS.The WSSQ and the WBIS were used to assess internalized weight stigma in N = 78 prebariatric surgery patients. Further, body mass index (BMI was assessed and body image, quality of life, self-esteem, depression, and anxiety were measured by well-established self-report questionnaires. Reliability, correlation, and regression analyses were conducted.Internal consistency of the WSSQ was acceptable, while good internal consistency was found for the WBIS. Both measures were significantly correlated with each other and body image. While only the WSSQ was correlated with overweight preoccupation, only the WBIS was correlated with appearance evaluation. Both measures were not associated with BMI. However, correlation coefficients did not differ between the WSSQ and the WBIS for all associations with validity measures. Further, both measures significantly predicted quality of life, self-esteem, depression, and anxiety, while the WBIS explained significantly more variance than the WSSQ total score for self-esteem.Findings indicate the WSSQ and the WBIS to be reliable and valid assessments of internalized weight stigma in prebariatric surgery patients, although the WBIS showed marginally more favorable results than the WSSQ. For both measures, longitudinal studies on stability and predictive validity are warranted, for example, for weight
Hope, Madeleine L; Page, Andrew C; Hooke, Geoffrey R
In the domain of mental health outcomes, increasing interest has been shown in complementing traditional symptom measures with measures of a patient's quality of life. The objective of this study was to evaluate the value of including the Quality of Life Enjoyment and Satisfaction Questionnaire (Q-LES-Q) in the routine assessment battery used at a psychiatric hospital. The sample consisted of 1,276 consecutive inpatients treated at a private psychiatric hospital over a two-year period. Admission and discharge data were collected for the Q-LES-Q, the mental health subscales of the Medical Outcomes Short Form Questionnaire (SF-36), the Depression Anxiety Stress Scales, and the Health of the Nation Outcome Scale. Large patient improvements from admission to discharge were seen across all instruments (effect sizes from 0.8 to 1.5), including the Q-LES-Q (effect size 1.3). The Q-LES-Q correlated with existing symptom measures, and regression analyses revealed that quality of life predicted length of hospital stay even after symptoms of depression and anxiety were taken into account. Although the Q-LES-Q was correlated with symptom measures already in use, it added to the ability to predict patient length of stay, and showed some divergence from measures of clinical outcomes. This pattern was seen despite intentionally restricting the sample to patients with mood and affective disorder diagnoses. The value of considering quality of life in a comprehensive assessment of mental health outcomes is discussed.
The questionnaire was done every three years from 1986 for the ultimate purpose of safe medical examinations and this 5th one was performed in May, 1998 for the period of April, 1995-March, 1998. Subjects were 1,258 nuclear medicine facilities and answers were obtained in 81.6%. Questionnaire concerned the personnel involved in nuclear medical examinations, instruments, accidents occurred, matters possibly leading to accident, improvement in safety control, serious trouble and breakage of the instrument, request for the instrument manufacturers and so on. Summaries were: numbers of medical radiology technicians were increased, in vitro tests were decreased, SPECT instruments came into wide use, in accident and improvement cases, examination beds were arousing much interest, concerns to examine were further required, communication with the manufacturers was insufficient, and problems for Y2K were pointed out to be resolved. (K.H.)
Jopp, Daniela S; Hertzog, Christopher
Everyday leisure activities in adulthood and old age have been investigated with respect to constructs such as successful aging, an engaged lifestyle, and prevention of age-related cognitive decline. They also relate to mental health and have clinical value, as they can inform diagnosis and interventions. In the present study, the authors enhanced the content validity of the Victoria Longitudinal Study activity questionnaire by adding items on physical and social activities and validated a shortened version of the questionnaire. The proposed leisure activity model included 11 activity categories: 3 types of social activities (i.e., activities with close social partners, group-centered public activity, religious activities), physical activities, developmental activities, experiential activities, crafts, game playing, TV watching, travel, and technology use. Confirmatory factor analyses validated the proposed factor structure in 2 independent samples. A higher order model with a general activity factor fitted the activity factor correlations with relatively little loss of fit. Convergent and discriminant validity for the activity scales were supported by patterns of their correlations with education, health, depression, cognition, and personality. In sum, the scores derived from of the augmented Victoria Longitudinal Study activity questionnaire demonstrate good reliability, and validity evidence supports their use as measures of leisure activities in young, middle-aged, and older individuals. PsycINFO Database Record (c) 2010 APA, all rights reserved.
Kawano, Takao; Nomura, Kiyoshi
To look over the current measurement of radioactivity concentration in working environment of many radioisotopes facilities, a questionnaire survey was carried out under the auspices of the Planning Committee of the Japan Society of Radiation Safety Management. 64 responses were obtained in 128 radiation facilities, which the questionnaires were sent to. The main results were obtained by aggregate analysis of the answers for questionnaires as the followings. Major nuclides subject to measurement were 3 H, 14 C, 32 P and 125 I Sampling of radioisotopes in air was mainly performed using collectors like dust samplers and HC-collectors. Liquid scintillation counters and gamma counters were used to measure β and γ radioactivity contained in airborne particles or gas samples. Contamination by radioactivity was not detected in 55% facilities surveyed, but in 40% facilities at the same level as or at lower levels than a hundredth part of the regulated concentration limit of each nuclide. Almost all facilities is found to consider that the measurement of radioactivity concentration in working environments is not always necessary. (author)
Carvalho, Flávia A; Morelhão, Priscila K; Franco, Marcia R; Maher, Chris G; Smeets, Rob J E M; Oliveira, Crystian B; Freitas Júnior, Ismael F; Pinto, Rafael Z
Although there is some evidence for reliability and validity of self-report physical activity (PA) questionnaires in the general adult population, it is unclear whether we can assume similar measurement properties in people with chronic low back pain (LBP). To determine the test-retest reliability of the International Physical Activity Questionnaire (IPAQ) long-version and the Baecke Physical Activity Questionnaire (BPAQ) and their criterion-related validity against data derived from accelerometers in patients with chronic LBP. Cross-sectional study. Patients with non-specific chronic LBP were recruited. Each participant attended the clinic twice (one week interval) and completed self-report PA. Accelerometer measures >7 days included time spent in moderate-and-vigorous physical activity, steps/day, counts/minute, and vector magnitude counts/minute. Intraclass Correlation Coefficients (ICC) and Bland and Altman method were used to determine reliability and spearman rho correlation were used for criterion-related validity. A total of 73 patients were included in our analyses. The reliability analyses revealed that the BPAQ and its subscales have moderate to excellent reliability (ICC 2,1 : 0.61 to 0.81), whereas IPAQ and most IPAQ domains (except walking) showed poor reliability (ICC 2,1 : 0.20 to 0.40). The Bland and Altman method revealed larger discrepancies for the IPAQ. For the validity analysis, questionnaire and accelerometer measures showed at best fair correlation (rho reliability than the IPAQ long-version, both questionnaires did not demonstrate acceptable validity against accelerometer data. These findings suggest that questionnaire and accelerometer PA measures should not be used interchangeably in this population. Copyright © 2016 Elsevier Ltd. All rights reserved.
Mejdahl, Caroline; Nielsen, Berit Kjærside; Hjøllund, Niels Henrik Ingvar
Rationale, aims and objectives: Patient-reported outcomes (PROs) are being implemented in clinical practice across different healthcare settings with varying purposes. Involving patients in reporting outcomes may increase their attention to symptoms and thereby support their self-management. The ...... to strengthen patient involvement and securing benefit from PROs.......Rationale, aims and objectives: Patient-reported outcomes (PROs) are being implemented in clinical practice across different healthcare settings with varying purposes. Involving patients in reporting outcomes may increase their attention to symptoms and thereby support their self......-management. The aim of the present study was to describe patients’ experiences with a web-based PRO system where patients complete a PRO questionnaire at home or in the outpatient clinic prior to a consultation. Moreover, the study aimed to explore how PROs influenced the interaction between patients and clinicians...
Tomioka, Kuniaki; Suzuki, Hideki; Inoue, Tomio; Matsumoto, Mitsuomi; Hasegawa, Akira; Endo, Keigo
The utilization and preservation of reports on diagnostic radiology and physiology examinations in Gunma University Hospital was evaluated using a questionnaire, in advance of an online reporting system linked to the PACS (Picture Archiving and Communication System) being introduced into the hospital information system. The recovery rate was 83% (83/100). And the following results were obtained. Reports made by specialists are necessary, irrespective of the grade and complexity of examinations. Reports have to be written in correspondence with clinical problems. For case of film-report matching, some schemata should be added to sentence-form reports. The format of reports, including the language, expression and extent of comments, may be modified in accordance with the speciality or career of the referring doctor. (author)
Full Text Available Transplantation of body hair in to scalp has been suggested as an option to treat extensive cases of baldness with poor donor scalp. However, evidence about its long-term efficacy is yet lacking, with very few published reports and the routine use of the technique is still controversial. We report the satisfactory outcome in a case of extensive baldness in whom hairs from different donor areas such as chest, abdomen, arms, thighs were transplanted on to scalp.
Bamber, David; Castka, Pavel
Purpose: To identify competencies connecting personality, organizational orientations and self-reported learning outcomes (as measured by concise Likert-type scales), for individuals who are learning for their organizations. Design/methodology/approach: Five concise factor scales were constructed to represent aspects of personality. Three further…
Hjorth Lauersen, Ditte; Christensen, Karl Bang; Christensen, Ulla
increased self-management skills, improved acceptance of their chronic illness and decreased negative emotional response to their disease. Applying HeiQ as an outcome measure yielded new knowledge as to what patients with diabetes can obtain by participating in a patient education....... of affected individuals and escalating costs. Patient education is one option for improving patient self-management. However, there are large discrepancies in the outcomes of such programs and long-term data are lacking. We assessed the short and long-term outcomes of diabetes patient education using...... the health education impact questionnaire (HeiQ). Methods We conducted a observational cohort study of 83 type 2 diabetes patients participating in patient education programs in Denmark. The seven-scale HeiQ was completed by telephone interview at baseline and 2 weeks (76 participants, 93%) and 12 months (66...
Recinos, Pablo F; Dunphy, Cheryl J; Thompson, Nicolas; Schuschu, Jesse; Urchek, John L; Katzan, Irene L
Systematic collection of patient-reported outcome measures (PROMs) during ambulatory clinic visits can enhance communication between patient and provider, and provide the ability to evaluate outcomes of care. Little is known about patient satisfaction of PROM data collection in routine clinical care. To evaluate patient reaction to the routine collection of PROMs in the ambulatory setting. Before all ambulatory clinic visits at our neurological institute, patients electronically complete health status questionnaires. We administered an 8-question patient satisfaction survey to a sample of patients seen across the institute after their clinical visit. Of 343 patients approached, 323 agreed to participate. The majority responded that the questionnaire system was easy to use, was an appropriate length, and benefited their care overall (strongly agree or agree = 92.3%, 87.6%, and 77.3%, respectively). Provider review of the PROMs with the patient during the clinic visit was associated with significantly higher positive responses to all questions, even those regarding logistical aspects of the collection process. There were significant age and race differences in response to perceived benefit: those in the Black/other race category had a markedly lower probability of viewing the process favorably with increasing age. Systematic collection of PROMs via an electronic questionnaire appears to be well accepted by patients. A minority of patients did not feel the questionnaire content applied to their appointment or that the system was a beneficial feature of the clinical practice. The provider can significantly improve the patient's perception of PROM collection and the patient-physician encounter by reviewing the questionnaire results with the patient.
Harmon-Jones, Cindy; Bastian, Brock; Harmon-Jones, Eddie
Several discrete emotions have broad theoretical and empirical importance, as shown by converging evidence from diverse areas of psychology, including facial displays, developmental behaviors, and neuroscience. However, the measurement of these states has not progressed along with theory, such that when researchers measure subjectively experienced emotions, they commonly rely on scales assessing broad dimensions of affect (positivity and negativity), rather than discrete emotions. The current manuscript presents four studies that validate a new instrument, the Discrete Emotions Questionnaire (DEQ), that is sensitive to eight distinct state emotions: anger, disgust, fear, anxiety, sadness, happiness, relaxation, and desire. Emotion theory supporting the importance of distinguishing these specific emotions is reviewed.
Kikas, Eve; Jõgi, Anna-Liisa
Two types of assessment instruments were developed to assess middle school students' learning strategies, and their effectiveness in predicting various learning outcomes was examined. The participants were 565 middle school students. Three subscales (rehearsal, organization, elaboration) from the "Motivated Strategies for Learning…
Kleinman, Leah; Buysse, Daniel J; Harding, Gale; Lichstein, Kenneth; Kalsekar, Anupama; Roth, Thomas
This article describes qualitative research conducted with patients with clinical diagnoses of insomnia and focuses on the development of a conceptual framework and endpoint model that identifies a hierarchy and interrelationships of potential outcomes in insomnia research. Focus groups were convened to discuss how patients experience insomnia and to generate items for patient-reported questionnaires on insomnia and associated daytime consequences. Results for the focus group produced two conceptual frameworks: one for sleep and one for daytime impairment. Each conceptual framework consists of hypothesized domains and items in each domain based on patient language taken from the focus group. These item pools may ultimately serve as a basis to develop new questionnaires to assess insomnia.
Caballo, Vicente E; Arias, Benito; Salazar, Isabel C; Irurtia, María Jesús; Hofmann, Stefan G
This article presents the psychometric properties of a new measure of social anxiety, the Social Anxiety Questionnaire for adults (SAQ), composed of 30 items that were developed based on participants from 16 Latin American countries, Spain, and Portugal. Two groups of participants were included in the study: a nonclinical group involving 18,133 persons and a clinical group comprising 334 patients with a diagnosis of social anxiety disorder (social phobia). Exploratory and confirmatory factor analyses supported a 5-factor structure of the questionnaire. The factors were labeled as follows: (1) Interactions with strangers, (2) Speaking in public/talking with people in authority, (3) Interactions with the opposite sex, (4) Criticism and embarrassment, and (5) Assertive expression of annoyance, disgust, or displeasure. Psychometric evidence supported the internal consistency, convergent validity, and measurement invariance of the SAQ. To facilitate clinical applications, a receiver operating characteristics (ROC) analysis identified cut scores for men and women for each factor and for the global score. (c) 2015 APA, all rights reserved.
The questionnaire has been done every three years from 1986 for the ultimate purpose of safe medical examinations and this 7th one was performed for the objective period of April 1, 2001-March 31, 2004. Subjects were 1,275 nuclear medicine facilities and answers were obtained in 77.2%. Questionnaire concerned the personnel involved in nuclear medical examinations (qualifications/medical doctor, pharmacist and radiology technologist and others), instruments (an additional investigation in the present period was conducted on PET/CT with cyclotron and automatic synthesis equipment and on SPECT/CT), accidents experienced, matters possibly leading to accident, improvement in safety control, serious trouble and breakage of the instrument, requests for the instrument manufacturers and so on. Results were: qualified radiology technologists amounted to 70% and doctors, 20%; personnel number for tests in vitro tended decreased; SPECT-camera with 2 detectors increased and with 1, obviously decreased; PET and related equipments greatly increased; check rate for imaging instruments was about 80%; gamma cameras were used over their maximum time limits recommended by manufacturers; actual accidents at examination increased but were not serious; improvements of instruments for safety sensor and of operation to avoid errors were required; mind for preventing accident was improved; many requests for the manufacturers were proposed. (author)
The Radiation Protection Section of the Japanese Society of Radiological Technology conducted a questionnaire survey on the criticality accident at the nuclear fuel processing facility in Tokai village on September 30, 1999 in order to identify factors related to the accident and consider countermeasures to deal with such accidents. The questionnaire was distributed to 347 members (122 facilities) of the Japanese Society of Radiological Technology who were working or living in Ibaraki Prefecture, and replies were obtained from 104 members (75 facilities). Questions to elicit the opinions of individuals were as following: method of obtaining information about the accident, knowledge about radiation, opinions about the accident, and requests directed to the Society. Questions regarding facilities concerned the following: communication after the accident, requests for dispatch to the accident site, and possession of radiometry devices. In regard to acquisition of information, 91 of the 104 members (87.5%) answered 'television or radios' followed by newspapers. Forty-five of 101 members were questioned about radiation exposure and radiation effects by the public. There were many opinions that accurate news should be provided rapidly, by the mass media. Many members (75%) felt that they lacked knowledge about radiation, reconfirming the importance of education and instruction concerning radiation. Dispatch was requested of 36 of the 75 facilities (48%), and 44 of 83 facilities (53%) owned radiometry instruments. (K.H.)
Nübling, R; Kaluscha, R; Krischak, G; Kriz, D; Martin, H; Müller, G; Renzland, J; Reuss-Borst, M; Schmidt, J; Kaiser, U; Toepler, E
Aim of the Study The outcome quality of medical rehabilitation is evaluated often by "Patient Reported Outcomes" (PROs). It is examined to what extent these PROs are corresponding with "hard" or "objective" outcomes such as payments of contributions to social insurance. Methods The "rehabilitation QM outcome study" includes self-reports of patients as well as data from the Rehabilitation Statistics Database (RSD) of the German pension insurance Baden-Wurttemberg. The sample for the question posed includes N=2 947 insured who were treated in 2011 in 21 clinics of the "health quality network" and who were either employed or unemployed at the time of the rehabilitation application (e. g. the workforce or labour force group, response rate: 55%). The sample turned out widely representative for the population of the insured persons. Results PROs and payment of contributions to pension insurance clearly correspond. In the year after the rehabilitation improved vs. not improved rehabilitees differed clearly with regard to their payments of contributions. Conclusions The results support the validity of PROs. For a comprehensive depiction of the outcome quality of rehabilitation PROs and payments of contributions should be considered supplementary. © Georg Thieme Verlag KG Stuttgart · New York.
Elbers, Roy G.; Rietberg, Marc B.; van Wegen, Erwin E. H.; Verhoef, John; Kramer, Sharon F.; Terwee, Caroline B.; Kwakkel, Gert
Purpose To critically appraise, compare and summarize the measurement properties of self-report fatigue questionnaires validated in patients with multiple sclerosis (MS), Parkinson’s disease (PD) or stroke. Methods MEDLINE, EMBASE, PsycINFO, CINAHL and SPORTdiscus were searched. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist was used to assess the methodological quality of studies. A qualitative data synthesis was performed to rate the mea...
Full Text Available The primary aim of this study was to assess knee range of motion (ROM as well as patients’ reported pain, stiffness and function up to six months after total knee arthroplasty (TKA. The secondary aim was to analyze the extent to which knee ROM correlates with patient-rated outcome. A prospective study included 60 patients with primary TKA for osteorthritis, admitted at Physical Medicine and Rehabilitation Clinic from April 2009 to October 2014. The patients were evaluated at 4 time points: at admission and at discharge, as well as at follow-up at 3 and at 6 months after surgery. The outcome parameters included: active knee ROM, as well as pain, stiffness and function according to self reported Western Ontario and McMaster Universities Osteoarthritis (WOMAC questionnaire. Statistically highly significant improvement in flexion and extension was observed from admission to all other assessment time points (p<0.001. Also, statistically significant improvement of all three WOMAC subscales (pain, stiffness and function was found between all assessments points (p<0.001. According to values of Spearman correlation coefficient, there was significant negative correlation of flexion with all WOMAC subscales at all assessment points, whereas correlation of extension with any assessed outcome parameter was without significance. It can be concluded that in TKA patients all outcome measures improved significantly from admission to 6 months follow-up. Knee flexion ROM negatively and moderately to strongly correlated with pain, stiffness and function, whereas correlation of extension with any assessed outcome measure was without significance.
Nyitray, Alan G; Harris, Robin B; Abalos, Andrew T; Nielson, Carrie M; Papenfuss, Mary; Giuliano, Anna R
Accurate knowledge about human sexual behaviors is important for increasing our understanding of human sexuality; however, there have been few studies assessing the reliability of sexual behavior questionnaires designed for community samples of adult men. A test-retest reliability study was conducted on a questionnaire completed by 334 men who had been recruited in Tucson, Arizona. Reliability coefficients and refusal rates were calculated for 39 non-sexual and sexual behavior questionnaire items. Predictors of unreliable reporting for lifetime number of female sexual partners were also assessed. Refusal rates were generally low, with slightly higher refusal rates for questions related to immigration, income, the frequency of sexual intercourse with women, lifetime number of female sexual partners, and the lifetime number of male anal sex partners. Kappa and intraclass correlation coefficients were substantial or almost perfect for all non-sexual and sexual behavior items. Reliability dropped somewhat, but was still substantial, for items that asked about household income and the men's knowledge of their sexual partners' health, including abnormal Pap tests and prior sexually transmitted diseases (STD). Age and lifetime number of female sexual partners were independent predictors of unreliable reporting while years of education was inversely associated with unreliable reporting. These findings among a community sample of adult men are consistent with other test-retest reliability studies with populations of women and adolescents.
Full Text Available Parents of young children with autism spectrum disorder (ASD encounter many daily challenges and often experience much stress. However, little research exists about parenting behavior among these parents. With this study, we aim to address this gap. We examined the structure and internal consistency of a questionnaire intended to measure parenting behavior among mothers of young children with ASD. Furthermore, we compared parenting behavior among mothers of young children with and without ASD between two and six years old. Factor analyses resulted in a factor solution with seven subscales of parenting behavior. Two additional subscales especially relevant for parenting preschoolers with ASD were also considered. Analyses of covariance, controlling for gender and age, showed significantly higher scores for Discipline and Stimulating the Development in the control group in comparison with the ASD group. These findings suggest that mothers of preschoolers with ASD are still trying to find strategies to guide and stimulate their child’s behavior and development effectively.
Kim, Ho-Joong; Park, Jong-Woong; Kang, Kyoung-Tak; Chang, Bong-Soon; Lee, Choon-Ki; Kang, Sung-Shik; Yeom, Jin S
Retrospective analysis of prospectively collected data (NCT02134821). The aim of this study was to elucidate the cutoff values for significant predictors for favorable outcomes after lumbar spine surgery in patients with lumbar spinal stenosis (LSS). Various factors are associated with the surgical outcomes for patients with LSS. However, we did not know the odds ratio and/or cutoff values of a predictive factor for a favorable surgical outcome for LSS. A total of 157 patients who underwent spine surgery due to LSS between June 2012 and April 2013 were included in this study. The patients were dichotomized into 2 groups on the basis of an Oswestry Disability Index (ODI) score of 22 or less (favorable outcome group) or more than 22 (unfavorable outcome group) at 12 months after surgery. Regarding favorable outcomes, the odds ratio for each preoperative variable including demographic data, preoperative symptom severity, and pain sensitivity questionnaire (PSQ) score was calculated using univariate and multivariate logistic regression analyses. For the significant variables for surgical outcome, receiver operating characteristic (ROC) curve was plotted with calculation of the area under the ROC curve. Multivariate analysis revealed that the ODI and total PSQ scores were significantly associated with a greater likelihood of an unfavorable surgical outcome [odds ratio (95% confidence interval) of ODI, 1.289 (1.028-1.616); odds ratio (95% confidence interval) of total PSQ, 1.060 (1.009-1.113)]. ROC analysis revealed area under the ROC curves for the total PSQ and ODI scores of 0.638 (P = 0.005) and 0.692 (P disability and pain sensitivity can be predictors of the functional level achieved after spine surgery in patients with LSS, and the ideal cutoff values for the total PSQ and ODI scores were 6.6 and 45.0, respectively.
Radiation control in Japanese medicare facilities is regulated generally by multiple laws of radiation and the Committee has investigated their actual radiation control practice through questionnaire, of which result and its analysis are described here. The questionnaire on web (Committee's homepage) was conducted in the period Apr., 13-May, 1, 2009, by asking to medical radiology personnel (MRP) with 20 items, mainly about personnel working for radiation medicare (RM), monitoring of their external dose, notice of exposure dose to individual person, archiving of the dose record, and questions about the Law Concerning Prevention from Radiation Hazard due to Radioisotopes, Etc.; was answered by 378 facilities where 15,281 persons in total worked for RM (41/facility in average); and the facilities were under regulation by 1 (Medical, 39%) and 2 (Medical and for Prevention, 61%) laws. Major findings were: 71% of facilities had no clear rule to select MRP; 98% trusted dosimetry outside; in 76%, personnel participating in RM had pocket dosimeter as well; 70% investigated the exposure history at personnel employment; to personnel whose dose could exceed or exceeded 20 mSv/y, 45% transferred the person to other work site, 34% issued warning and 21% had no such personnel; 73% felt the necessity of qualified expert for radiation control; 81% conducted education and training to MRP; 54% used radiation-generating equipments, 27%, unsealed radioisotopes and 19%, sealed ones; and 77% felt the radiation control should be unified in the Medical Law. Based on the findings, the Committee discussed and commented about definition and selection of MRP, dosimetry and its record of MRP having multiple, increasing works, uncertainty of the exact number of MRP in Japan, and desirable unification of radiation control practice in the medicare facility into the Medical Law if amended in future. (K.T.)
Even, L; Bouali, O; Moscovici, J; Huyghe, E; Pienkowski, C; Rischmann, P; Galinier, P; Game, X
To evaluate outcomes and long-term sexual quality of life after hypospadias surgery. Seventeen-years-old patients operated for a posterior hypospadias in childhood were included in a transversal study. Fifteen patients, among the forty children treated since 1997, accepted to participate. These young men (mean age at the first surgery was 27.9±20months) were clinically reviewed and responded to questionnaires (EUROQOL 5, IIEF15 and non-validated questionnaire). This study arises about 8.4±5years after the last visit in paediatric department. Mean study age was 21.2±4.7years. One third of patients thought that global quality of life was distorted. Although 33% of the patients had erectile dysfunction, 80% were satisfied with their sexual quality of life. The most important complains were relative to the penile appearance. Number of procedures was not predictive of patient's satisfaction about penile function and appearance. Thirty-three percents of the patients would have been satisfied to have psychological and medical support. They would be interested in having contact with patients who suffered from the same congenital abnormality. These patients had functional and esthetical disturbances. This visit leads to a specific visit in 20% cases. In this study, medical follow-up does not seem to be counselling and had to be adapted. Adequate follow-up transition between paediatric and adult departments especially during adolescence seems to be necessary. Copyright © 2015 Elsevier Masson SAS. All rights reserved.
Voineskos, Sophocles H; Nelson, Jonas A; Klassen, Anne F; Pusic, Andrea L
Satisfaction and improved quality of life are among the most important outcomes for patients undergoing plastic and reconstructive surgery for a variety of diseases and conditions. Patient-reported outcome measures (PROMs) are essential tools for evaluating the benefits of newly developed surgical techniques. Modern PROMs are being developed with new psychometric approaches, such as Rasch Measurement Theory, and their measurement properties (validity, reliability, responsiveness) are rigorously tested. These advances have resulted in the availability of PROMs that provide clinically meaningful data and effectively measure functional as well as psychosocial outcomes. This article guides the reader through the steps of creating a PROM and highlights the potential research and clinical uses of such instruments. Limitations of PROMs and anticipated future directions in this field are discussed.
Rogozińska, Ewelina; Marlin, Nadine; Yang, Fen; Dodd, Jodie M; Guelfi, Kym; Teede, Helena; Surita, Fernanda; Jensen, Dorte M; Geiker, Nina R W; Astrup, Arne; Yeo, SeonAe; Kinnunen, Tarja I; Stafne, Signe N; Cecatti, Jose G; Bogaerts, Annick; Hauner, Hans; Mol, Ben W; Scudeller, Tânia T; Vinter, Christina A; Renault, Kristina M; Devlieger, Roland; Thangaratinam, Shakila; Khan, Khalid S
Trials on diet and physical activity in pregnancy report on various outcomes. We aimed to assess the variations in outcomes reported and their quality in trials on lifestyle interventions in pregnancy. We searched major databases without language restrictions for randomized controlled trials on diet and physical activity-based interventions in pregnancy up to March 2015. Two independent reviewers undertook study selection and data extraction. We estimated the percentage of papers reporting 'critically important' and 'important' outcomes. We defined the quality of reporting as a proportion using a six-item questionnaire. Regression analysis was used to identify factors affecting this quality. Sixty-six randomized controlled trials were published in 78 papers (66 main, 12 secondary). Gestational diabetes (57.6%, 38/66), preterm birth (48.5%, 32/66) and cesarian section (60.6%, 40/66), were the commonly reported 'critically important' outcomes. Gestational weight gain (84.5%, 56/66) and birth weight (87.9%, 58/66) were reported in most papers, although not considered critically important. The median quality of reporting was 0.60 (interquartile range 0.25, 0.83) for a maximum score of one. Study and journal characteristics did not affect quality. Many studies on lifestyle interventions in pregnancy do not report critically important outcomes, highlighting the need for core outcome set development. © 2017 Japan Society of Obstetrics and Gynecology.
Powers, John H; Patrick, Donald L; Walton, Marc K; Marquis, Patrick; Cano, Stefan; Hobart, Jeremy; Isaac, Maria; Vamvakas, Spiros; Slagle, Ashley; Molsen, Elizabeth; Burke, Laurie B
A clinician-reported outcome (ClinRO) assessment is a type of clinical outcome assessment (COA). ClinRO assessments, like all COAs (patient-reported, observer-reported, or performance outcome assessments), are used to 1) measure patients' health status and 2) define end points that can be interpreted as treatment benefits of medical interventions on how patients feel, function, or survive in clinical trials. Like other COAs, ClinRO assessments can be influenced by human choices, judgment, or motivation. A ClinRO assessment is conducted and reported by a trained health care professional and requires specialized professional training to evaluate the patient's health status. This is the second of two reports by the ISPOR Clinical Outcomes Assessment-Emerging Good Practices for Outcomes Research Task Force. The first report provided an overview of COAs including definitions important for an understanding of COA measurement practices. This report focuses specifically on issues related to ClinRO assessments. In this report, we define three types of ClinRO assessments (readings, ratings, and clinician global assessments) and describe emerging good measurement practices in their development and evaluation. The good measurement practices include 1) defining the context of use; 2) identifying the concept of interest measured; 3) defining the intended treatment benefit on how patients feel, function, or survive reflected by the ClinRO assessment and evaluating the relationship between that intended treatment benefit and the concept of interest; 4) documenting content validity; 5) evaluating other measurement properties once content validity is established (including intra- and inter-rater reliability); 6) defining study objectives and end point(s) objectives, and defining study end points and placing study end points within the hierarchy of end points; 7) establishing interpretability in trial results; and 8) evaluating operational considerations for the implementation of
Hunter, Robert; Cameron, Rosie; Norrie, John
The primary aim of the Scottish Schizophrenia Outcomes Study (SSOS) was to assess the feasibility and utility of routinely collecting outcome data in everyday clinical settings. Data were collected over three years in the Scottish National Health Service (NHS). There were two secondary aims of SSOS: first, to compare data from patient-rated, objective, and clinician-rated outcomes, and second, to describe trends in outcome data and service use across Scotland over the three years of the study (2002-2005). This study used a naturalistic, longitudinal, observational cohort design. A representative sample of 1,015 persons with ICD-10 F20-F29 diagnoses (schizophrenia, schizotypal disorders, or delusional disorders) was assessed annually using the clinician-rated measure, the Health of the Nation Outcome Scale (HoNOS), and the patient-reported assessment, the Avon Mental Health Measure (Avon). Objective outcomes data and information on services and interventions were collected. Data were analyzed with regression modeling. Of the 1,015 persons recruited, 78% of the cohort (N=789) completed the study. Over the study period, significant decreases were seen in the number of hospitalizations, incidence of attempted suicide and self-harm, and civil detentions. Avon scores indicated significant improvement on all subscales (behavior, social, access, and mental health) and on the total score. However, HoNOS scores on the behavior and symptom subscales did not change, scores on the impairment subscale increased significantly (indicating increased levels of impairment), and scores on the social subscale decreased significantly (indicating improved social functioning). This study has demonstrated that it is feasible within the Scottish NHS to routinely collect meaningful outcomes data in schizophrenia. Patient-reported assessments were also successfully collected and used in care plans. This model shows that it is possible to incorporate patient-reported assessments into routine
Froud, R.; Eldridge, S.; Kovacs, F.
trials. METHODS: We presented experts with clinicians' views on different reporting methods and asked them to rate and comment on the suitability reporting methods for inclusion in a standardized set. Panellists developed a statement of recommendation over three online rounds. We used a modified Delphi......BACKGROUND: Low back pain is a common and expensive health complaint. Many low back pain trials have been conducted, but these are reported in a variety of ways and are often difficult to interpret. AIM: To facilitate consensus on a statement recommending reporting methods for future low back pain...... process and the RAND/UCLA appropriateness method as a formal framework for establishing appropriateness and quantifying panel disagreement. RESULTS: A group of 63 experts from 14 countries participated. Consensus was reached on a statement recommending that the continuous patient-reported outcomes...
Hafner, Brian J; Morgan, Sara J; Askew, Robert L; Salem, Rana
Documentation of clinical outcomes is increasingly expected in delivery of prosthetic services and devices. However, many outcome measures suitable for use in clinical care and research have not been psychometrically tested with prosthesis users. The aim of this study was to determine test-retest reliability, mode-of-administration (MoA) equivalence, standard error of measurement (SEM), and minimal detectable change (MDC) of standardized, self-report instruments that assess constructs of importance to people with lower limb loss. Prosthesis users (n = 201) were randomly assigned to groups based on MoA (i.e., paper, electronic, or mixed-mode). Participants completed two surveys 2 to 3 d apart. Instruments included the Prosthetic Limb Users Survey of Mobility, Prosthesis Evaluation Questionnaire-Mobility Subscale, Activities-Specific Balance Confidence Scale, Quality of Life in Neurological Conditions-Applied Cognition/General Concerns, Patient-Reported Outcomes Measurement Information System Profile, and Socket Comfort Score. Intraclass correlation coefficients indicated all instruments are appropriate for group-level comparisons and select instruments are suitable for individual-level applications. Several instruments showed evidence of possible floor and ceiling effects. All were equivalent across MoAs. SEM and MDC were quantified to facilitate interpretation of outcomes and change scores. These results can enhance clinicians' and researchers' ability to select, apply, and interpret scores from instruments administered to prosthesis users.
Winkler, Laura Vad; Frølich, Jacob Stampe; Gudex, Claire
Patient-reported outcome is increasingly applied in health sciences. Patients with eating disorders (EDs) characteristically have a different opinion of their needs to that of the health professionals, which can lead to ambivalence towards treatment and immense compliance difficulties. This cross....... This association was not observed in bulimia nervosa (BN). We did not find a correlation between SF-36 scores and BMI in any of the diagnostic groups....
Wang, Yifan; Wu, Lingdan; Zhou, Hongli; Xu, Jiaojing; Dong, Guangheng
Internet search has become the most common way that people deal with issues and problems in everyday life. The wide use of Internet search has largely changed the way people search for and store information. There is a growing interest in the impact of Internet search on users' affect, cognition, and behavior. Thus, it is essential to develop a tool to measure the changes in psychological characteristics as a result of long-term use of Internet search. The aim of this study is to develop a Questionnaire on Internet Search Dependence (QISD) and test its reliability and validity. We first proposed a preliminary structure and items of the QISD based on literature review, supplemental investigations, and interviews. And then, we assessed the psychometric properties and explored the factor structure of the initial version via exploratory factor analysis (EFA). The EFA results indicated that four dimensions of the QISD were very reliable, i.e., habitual use of Internet search, withdrawal reaction, Internet search trust, and external storage under Internet search. Finally, we tested the factor solution obtained from EFA through confirmatory factor analysis (CFA). The results of CFA confirmed that the four dimensions model fits the data well. In all, this study suggests that the 12-item QISD is of high reliability and validity and can serve as a preliminary tool to measure the features of Internet search dependence.
Full Text Available Internet search has become the most common way that people deal with issues and problems in everyday life. The wide use of Internet search has largely changed the way people search for and store information. There is a growing interest in the impact of Internet search on users’ affect, cognition and behavior. Thus, it is essential to develop a tool to measure the changes in psychological characteristics as a result of long-term use of Internet search. The present study aimed to develop a Questionnaire on Internet Search Dependence (QISD, and test its reliability and validity. We first proposed a preliminary structure and items of the QISD based on literature review, supplemental investigations, and interviews. And then, we assessed the psychometric properties and explored the factor structure of the initial version via exploratory factor analysis (EFA. The EFA results indicated that four dimensions of the QISD were very reliable, i.e., habitual use of Internet search, withdrawal reaction, Internet search trust and external storage under Internet search. Lastly, we tested the factor solution obtained from EFA through confirmatory factor analysis (CFA. The results of CFA confirmed that the four dimensions model fits the data well. In all, the present study suggests that the 12-item QISD is of high reliability and validity, and can serve as a preliminary tool to measure the features of Internet search dependence.
Ishikawa, Mitsuo [Kitasato Univ., Sagamihara, Kanagawa (Japan). School of Allied Health Sciences; Matsuura, Takatoshi [Sekishinkai Sayama Hospital, Saitama (Japan); Okuaki, Tomoyuki; Imai, Yoshio; Tsukamoto, Atsuko [Kanto Medical Center NTT EC, Tokyo (Japan); Ide, Toshinori [Kajima Corp., Tokyo (Japan). Kajima Clinic; Shinohara, Fuminori [Nippon Medical School, Kawasaki, Kanagawa (Japan). Second Hospital; Miyazaki, Shigeru [Toho Univ., Tokyo (Japan). Ohashi Hospital
X-ray equipment has seen advances in inverters and the digitalization of reception systems. The X-ray Systems Study Group, in order to examine changes in the conditions of radiography, including pediatric radiography, variations in shortest irradiation time, and standardization of the conditions of radiography, carried out investigative research using a questionnaire survey that was sent to 400 facilities. The recovery rate was 33%. In terms of the reception system, half of the general radiography systems were using computed radiography (CR). Seventy percent of respondents used an intensifying screen and film (SEF) in stomach double-contrast radiography. About 80% used digital radiography (DR) and digital subtraction angiography (DSA) in aorta abdominalis angiography. At least 70% of high-voltage generators were of the inverter type. The conditions of radiography were not greatly influenced by changes in reception systems and X-ray equipment. Many pediatric radiographies were carried out by radiological technologists. We consider it useful to conduct such survey investigations. (author)
Ishikawa, Mitsuo; Matsuura, Takatoshi; Okuaki, Tomiyuki; Imai, Yoshio; Tsukamoto, Atsuko; Ide, Toshinori; Shinohara, Fuminori; Miyazaki, Shigeru
X-ray equipment has seen advances in inverters and the digitalization of reception systems. The X-ray Systems Study Group, in order to examine changes in the conditions of radiography, including pediatric radiography, variations in shortest irradiation time, and standardization of the conditions of radiography, carried out investigative research using a questionnaire survey that was sent to 400 facilities. The recovery rate was 33%. In terms of the reception system, half of the general radiography systems were using computed radiography (CR). Seventy percent of respondents used an intensifying screen and film(S EF)in stomach double-contrast radiography. About 80% used digital radiography (DR) and digital subtraction angiography (DSA) in aorta abdominalis angiography. At least 70% of high-voltage generators were of the inverter type. The conditions of radiography were not greatly influenced by changes in reception systems and X-ray equipment. Many pediatric radiographies were carried out by radiological technologists. We consider it useful to conduct such survey investigations.
Jamieson Lisa M
Full Text Available Abstract Objectives To determine oral health literacy (REALD-30 and oral health literacy-related outcome associations, and to calculate if oral health literacy-related outcomes are risk indicators for poor self-reported oral health among rural-dwelling Indigenous Australians. Methods 468 participants (aged 17-72 years, 63% female completed a self-report questionnaire. REALD-30 and oral health literacy-related outcome associations were determined through bivariate analysis. Multivariate modelling was used to calculate risk indicators for poor self-reported oral health. Results REALD-30 scores were lower among those who believed teeth should be infrequently brushed, believed cordial was good for teeth, did not own a toothbrush or owned a toothbrush but brushed irregularly. Tooth removal risk indicators included being older, problem-based dental attendance and believing cordial was good for teeth. Poor self-rated oral health risk indicators included being older, healthcare card ownership, difficulty paying dental bills, problem-based dental attendance, believing teeth should be brushed infrequently and irregular brushing. Perceived need for dental care risk indicators included being female and problem-based dental attendance. Perceived gum disease risk indicators included being older and irregular brushing. Feeling uncomfortable about oro-facial appearance risk indicators included problem-based dental attendance and irregular brushing. Food avoidance risk indicators were being female, difficulty paying dental bills, problem-based dental attendance and irregular brushing. Poor oral health-related quality of life risk indicators included difficulty paying dental bills and problem-based dental attendance. Conclusions REALD-30 was significantly associated with oral health literacy-related outcomes. Oral health literacy-related outcomes were risk indicators for each of the poor self-reported oral health domains among this marginalised population.
Collaco, Joseph M; Blackman, Scott M; Raraigh, Karen S; Morrow, Christopher B; Cutting, Garry R; Paranjape, Shruti M
Cystic fibrosis (CF) is characterized by recurrent respiratory infections and progressive lung disease. Whereas exercise may contribute to preserving lung function, its benefit is difficult to ascertain given the selection bias of healthier patients being more predisposed to exercise. Our objective was to examine the role of self-reported exercise with longitudinal lung function and body mass index (BMI) measures in CF. A total of 1038 subjects with CF were recruited through the U.S. CF Twin-Sibling Study. Questionnaires were used to determine exercise habits. Questionnaires, chart review, and U.S. CF Foundation Patient Registry data were used to track outcomes. Within the study sample 75% of subjects self-reported regular exercise. Exercise was associated with an older age of diagnosis (p = 0.002), older age at the time of ascertainment (p nutritional and pulmonary outcomes in cystic fibrosis for adults. Although prospective studies are needed to confirm these associations, programs to promote regular exercise among individuals with cystic fibrosis would be beneficial.
Ramasamy, Abhilasha; Martin, Mona L; Blum, Steven I; Liedgens, Hiltrud; Argoff, Charles; Freynhagen, Rainer; Wallace, Mark; McCarrier, Kelly P; Bushnell, Donald M; Hatley, Noël V; Patrick, Donald L
To identify patient-reported outcome (PRO) instruments that assess chronic low back pain (cLBP) symptoms (specifically pain qualities) and/or impacts for potential use in cLBP clinical trials to demonstrate treatment benefit and support labeling claims. Literature review of existing PRO measures. Publications detailing existing PRO measures for cLBP were identified, reviewed, and summarized. As recommended by the US Food & Drug Administration (FDA) PRO development guidance, standard measurement characteristics were reviewed, including development history, psychometric properties (validity and reliability), ability to detect change, and interpretation of observed changes. Thirteen instruments were selected and reviewed: Low Back Pain Bothersomeness Scale, Neuropathic Pain Symptom Inventory, PainDETECT, Pain Quality Assessment Scale Revised, Revised Short Form McGill Pain Questionnaire, Low Back Pain Impact Questionnaire, Oswestry Disability Index, Pain Disability Index, Roland-Morris Disability Questionnaire, Brief Pain Inventory and Brief Pain Inventory Short Form, Musculoskeletal Outcomes Data Evaluation and Management System Spine Module, Orebro Musculoskeletal Pain Questionnaire, and the West Haven-Yale Multidimensional Pain Inventory Interference Scale. The instruments varied in the aspects of pain and/or impacts that they assessed, and none of the instruments fulfilled all criteria for use in clinical trials to support labeling claims based on recommendations outlined in the FDA PRO guidance. There is an unmet need for a validated PRO instrument to evaluate cLBP-related symptoms and impacts for use in clinical trials. © 2017 American Academy of Pain Medicine. All rights reserved. For permissions, please e-mail: firstname.lastname@example.org
Postoperative perceived health status in adolescent following idiopathic scoliosis surgical treatment: results using the adapted French version of Scoliosis Research Society Outcomes questionnaire (SRS-22).
Chaib, Y; Bachy, M; Zakine, S; Mary, P; Khouri, N; Vialle, R
Assessing functional outcome from patient-based outcomes questionnaires are essential to the evaluation of adolescent idiopathic scoliosis surgical treatment At the minimum follow-up of 2 years, 45 operated on adolescent idiopathic scoliosis patients were mailed the French version of the Scoliosis Research Society Outcome Instrument (SRS-22) questionnaires containing items on pain, activities of daily living, and satisfaction. Mean values of the SRS-22 domains were 3,66 for the Pain domain, 3,85 for the Self-perceived image domain, 4,32 for the Function domain, 3,52 for the Mental health domain and 4,12 for the Global satisfaction with management domain. Mean value of the global SRS-22 score was 3,88. We showed no differences in functional SRS-22 health status in patients according to the type of curve (Lenke classification). We showed statistically significant correlations between the gain of Cobb angle and Patients self-image and function domain scores. There was a statistically significant correlation between preoperative Cobb angle and patient satisfaction with management. Even if Function and Self-image scores in our patients are close to control group values, indicating good short to mid-term outcome of surgical treatment, scores for pain and mental health status were significantly lower in patients than controls. Long-term follow-up studies conducted by multiple surgeons over successive generations are mandatory to assess clinical significance of these differences. Level IV. Retrospective study. Copyright © 2013 Elsevier Masson SAS. All rights reserved.
Kuis, E.; Goossensen, M.A.; van Dijke, J.; Baart, A.J.
Background: The concept of ‘presence’ appears frequently in the literature and seems to be a highly relevant concept in discussing and evaluating quality of relations in healthcare practices. However, no existing self-report measure of presence for health professionals was found. Purpose: The
Christina Jen-Chia Hsieh
Full Text Available Early identification and treatment are associated with improved outcomes in bipolar disorder and schizophrenia. Screening for the presence of these disorders usually involves time-intensive interviews that may not be practical in settings where mental health providers are limited. Thus, individuals at earlier stages of illness are often not identified. The Washington Early Recognition Center Affectivity and Psychosis (WERCAP Screen is a self-report questionnaire originally developed to identify clinical risk for developing bipolar or psychotic disorders. The goal of the current study was to investigate the utility of the WERCAP Screen and two complementary questionnaires, the WERC Stress Screen and the WERC Substance Screen, in identifying individuals with established schizophrenia or bipolar disorder. Participants consisted of 35 bipolar disorder (BPD and 34 schizophrenia (SCZ patients, as well as 32 controls (CON, aged 18-30 years. Univariate analyses were used to test for score differences between groups. Logistic regression and ROC curves were used to identify diagnostic predictors. Significant group differences were found for the psychosis section of the WERCAP (pWERCAP; p 20 (AUC: 0.87; sensitivity: 0.91; specificity: 1.0; while that for the pWERCAP to identify schizophrenia was a score of >13 (AUC: 0.89; sensitivity: 0.88; specificity: 0.88. These results indicate that the WERCAP Screen may be useful in screening individuals for bipolar disorder and schizophrenia, and that identifying stress and substance use severity can be rapidly done using self-report questionnaires. Larger studies in undiagnosed individuals will be needed to test the WERCAP Screen’s ability to identify mania or psychosis in the community.
de Guise, Elaine; Bélanger, Sara; Tinawi, Simon; Anderson, Kirsten; LeBlanc, Joanne; Lamoureux, Julie; Audrit, Hélène; Feyz, Mitra
The aim of the study was to determine if the Rivermead Postconcussion Symptoms Questionnaire (RPQ) is a better tool for outcome prediction than an objective neuropsychological assessment following mild traumatic brain injury (mTBI). The study included 47 patients with mTBI referred to an outpatient rehabilitation clinic. The RPQ and a brief neuropsychological battery were performed in the first few days following the trauma. The outcome measure used was the Mayo-Portland Adaptability Inventory-4 (MPAI-4) which was completed within the first 3 months. The only variable associated with results on the MPAI-4 was the RPQ score (p < .001). The predictive outcome model including age, education, and the results of the Trail-Making Test-Parts A and B (TMT) had a pseudo-R(2) of .02. When the RPQ score was added, the pseudo-R(2) climbed to .19. This model indicates that the usefulness of the RPQ score and the TMT in predicting moderate-to-severe limitations, while controlling for confounders, is substantial as suggested by a significant increase in the model chi-square value, delta (1df) = 6.517, p < .001. The RPQ and the TMT provide clinicians with a brief and reliable tool for predicting outcome functioning and can help target the need for further intervention and rehabilitation following mTBI.
Sizoo, E.M.; Dirven, L.; Reijneveld, J.C.; Postma, T.J.; Heimans, J.J.; Deliens, L.; Pasman, H.R.W.; Taphoorn, M.J.B.
To develop, validate, and report on the use of a retrospective proxy-reported questionnaire measuring health-related quality of life (HRQoL) in the end-of-life (EOL) phase of high-grade glioma (HGG) patients. Items relevant for the defined construct were selected using existing questionnaires,
Karcher, Nicole R; Barch, Deanna M; Avenevoli, Shelli; Savill, Mark; Huber, Rebekah S; Simon, Tony J; Leckliter, Ingrid N; Sher, Kenneth J; Loewy, Rachel L
Childhood psychoticlike experiences (PLEs) are associated with greater odds of a diagnosis of a psychotic disorder during adulthood. However, no known, well-validated self-report tools have been designed to measure childhood PLEs. To examine the construct validity and psychometric properties of a measure of PLEs, the Prodromal Questionnaire-Brief Child Version (PQ-BC). This validation study used data from the first wave of the Adolescent Brain and Cognitive Development (ABCD) Study, a prospective longitudinal study aimed at assessing risk factors associated with adverse physical and mental health outcomes from ages 9 to 10 years into late adolescence and early adulthood. The population-based sample of 3984 children within the ABCD data set was recruited from 20 research sites across the United States. Data for this study were collected from June 1, 2016, through August 31, 2017. The PQ-BC Total and Distress scores were analyzed for measurement invariance across race/ethnicity and sex, their associations with measures of PLEs, and their associations with known correlates of PLEs, including internalizing and externalizing symptoms, neuropsychological test performance, and developmental milestones. The study analyses included 3984 participants (1885 girls [47.3%] and 2099 boys [52.7%]; mean [SE] age, 10.0 [0.01] years). The results demonstrated measurement invariance across race/ethnicity and sex. A family history of psychotic disorder was associated with higher mean (SE) PQ-BC Total (3.883 [0.352]; β = 0.061; 95% CI, 0.027-0.094) and Distress (10.210 [1.043]; β = 0.051; 95% CI, 0.018-0.084) scores, whereas a family history of depression or mania was not. Higher PQ-BC scores were associated with higher rates of child-rated internalizing symptoms (Total score: β range, 0.218 [95% CI, 0.189-0.246] to 0.273 [95% CI, 0.245-0.301]; Distress score: β range, 0.248 [95% CI, 0.220-0.277] to 0.310 [95% CI, 0.281-0.338]), neuropsychological test performance
Quality of life and discriminating power of two questionnaires in fibromyalgia patients: fibromyalgia Impact Questionnaire and Medical Outcomes Study 36-Item Short-Form Health Survey A qualidade de vida e o poder de discriminação de dois questionários em pacientes com fibromialgia: fibromyalgia Impact Questionnaire e Medical Outcomes Study 36-Item Short-Form Health Survey
Full Text Available BACKGROUND: Fibromyalgia is a painful syndrome characterized by widespread chronic pain and associated symptoms with a negative impact on quality of life. OBJECTIVES: Considering the subjectivity of quality of life measurements, the aim of this study was to verify the discriminating power of two quality of life questionnaires in patients with fibromyalgia: the generic Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36 and the specific Fibromyalgia Impact Questionnaire (FIQ. METHODS: A cross-sectional study was conducted on 150 participants divided into Fibromyalgia Group (FG and Control Group (CG (n=75 in each group. The participants were evaluated using the SF-36 and the FIQ. The data were analyzed by the Student t-test (α=0.05 and inferential analysis using the Receiver Operating Characteristics (ROC Curve - sensitivity, specificity and area under the curve (AUC. The significance level was 0.05. RESULTS: The sample was similar for age (CG: 47.8±8.1; FG: 47.0±7.7 years. A significant difference was observed in quality of life assessment in all aspects of both questionnaires (pCONTEXTUALIZAÇÃO: A fibromialgia é uma síndrome dolorosa caracterizada por dor espalhada e crônica e sintomas associados com um impacto negativo na qualidade de vida. OBJETIVOS: Considerando a subjetividade da mensuração de qualidade de vida, o objetivo deste estudo foi avaliar o poder de discriminação de dois questionários que avaliam a qualidade de vida de pacientes com fibromialgia: o genérico Medical Short Form Healthy Survey (SF-36 e o específico Questionário do Impacto da Fibromialgia (QIF. MÉTODOS: Foi conduzido um estudo transversal com 150 indivíduos, divididos em dois grupos: grupo fibromialgia (FM e grupo controle (GC (n=75 em ambos. Os pacientes foram avaliados pelo SF-36 e pelo QIF. Na análise dos dados, utilizou-se o teste "t de Student" com α=0,05 e a Curva ROC (Receiver Operating Characteristics Curve. RESULTADOS: As amostras
Hidalgo, Marco A; Chen, Diane; Garofalo, Robert; Forbes, Catherine
Purpose: Parental acceptance of gender identity/expression in lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ+) youth moderates the effects of minority stress on mental health outcomes. Given this association, mental health clinicians of gender-expansive adolescents often assess the degree to which these youth perceive their parents/primary caregivers as accepting or nonaffirming of their gender identity and expression. While existing measures may reliably assess youth's perceptions of general family support, no known tool aids in the assessment an adolescent's perceived parental support related to adolescent gender-expansive experiences. Methods: To provide both clinicians and researchers with an empirically derived tool, the current study used factor analysis to explore an underlying factor structure of a brief questionnaire developed by subject-matter experts and pertaining to multiple aspects of perceived parental support in gender-expansive adolescents and young adults. Respondents were gender-expansive adolescents and young adults seeking care in an interdisciplinary gender-health clinic within a pediatric academic medical center in the Midwestern United States. Results: Exploratory factor analysis resulted in a 14-item questionnaire comprised of two subscales assessing perceived parental nonaffirmation and perceived parental acceptance. Internal consistency and construct validity results provided support for this new questionnaire. Conclusion: This study provides preliminary evidence of the factor structure, reliability and validity of the Parental Attitudes of Gender Expansiveness Scale for Youth (PAGES-Y). These findings demonstrate both the clinical and research utility of the PAGES-Y, a tool that can yield a more nuanced understanding of family-related risk and protective factors in gender-expansive adolescents.
Dickinson, D M; Shearon, T H; O'Keefe, J; Wong, H-H; Berg, C L; Rosendale, J D; Delmonico, F L; Webb, R L; Wolfe, R A
Measuring and monitoring performance--be it waiting list and posttransplant outcomes by a transplant center, or organ donation success by an organ procurement organization and its partnering hospitals--is an important component of ensuring good care for people with end-stage organ failure. Many parties have an interest in examining these outcomes, from patients and their families to payers such as insurance companies or the Centers for Medicare and Medicaid Services; from primary caregivers providing patient counseling to government agencies charged with protecting patients. The Scientific Registry of Transplant Recipients produces regular, public reports on the performance of transplant centers and organ procurement organizations. This article explains the statistical tools used to prepare these reports, with a focus on graft survival and patient survival rates of transplant centers--especially the methods used to fairly and usefully compare outcomes of centers that serve different populations. The article concludes with a practical application of these statistics--their use in screening transplant center performance to identify centers that may need remedial action by the OPTN/UNOS Membership and Professional Standards Committee.
Bullinger, Monika; Quitmann, Julia; Silva, Neuza; Rohenkohl, Anja; Chaplin, John E; DeBusk, Kendra; Mimoun, Emmanuelle; Feigerlova, Eva; Herdman, Michael; Sanz, Dolores; Wollmann, Hartmut; Pleil, Andreas; Power, Michael
Testing cross-cultural equivalence of patient-reported outcomes requires sufficiently large samples per country, which is difficult to achieve in rare endocrine paediatric conditions. We describe a novel approach to cross-cultural testing of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire in five countries by sequentially taking one country out (TOCO) from the total sample and iteratively comparing the resulting psychometric performance. Development of the QoLISSY proceeded from focus group discussions through pilot testing to field testing in 268 short-statured patients and their parents. To explore cross-cultural equivalence, the iterative TOCO technique was used to examine and compare the validity, reliability, and convergence of patient and parent responses on QoLISSY in the field test dataset, and to predict QoLISSY scores from clinical, socio-demographic and psychosocial variables. Validity and reliability indicators were satisfactory for each sample after iteratively omitting one country. Comparisons with the total sample revealed cross-cultural equivalence in internal consistency and construct validity for patients and parents, high inter-rater agreement and a substantial proportion of QoLISSY variance explained by predictors. The TOCO technique is a powerful method to overcome problems of country-specific testing of patient-reported outcome instruments. It provides an empirical support to QoLISSY's cross-cultural equivalence and is recommended for future research.
Xiong, David D; Ye, Wenda; Xiao, Roy; Miller, Jacob A; Mroz, Thomas E; Steinmetz, Michael P; Nagel, Sean J; Machado, Andre G
Prior studies have shown that patient-reported allergies can be prognostic of poorer postoperative outcomes. To investigate the correlation between self-reported allergies and outcomes after cervical or lumbar spine surgery. Retrospective cohort study at a single tertiary-care institution. All patients undergoing cervical or lumbar spine surgery from 2009-2014. The primary outcome measure was change in the EuroQol-5 Dimensions (EQ-5D) following surgery. Secondary outcomes included change in the Pain Disability Questionnaire (PDQ) and Patient Health Questionnaire-9 (PHQ-9), achieving the minimal clinically important difference (MCID) in these measures, as well as cost of admission. Prior to and following surgery, EQ-5D, PDQ, and PHQ-9 were recorded for patients with available data. Paired student's t-tests were used to compare change in these measures following surgery. Multivariable linear and logistic regression were used to assess the relationship between the log transformation of the total number of allergies and outcomes. 592 cervical patients and 4,465 lumbar patients were included. The median number of reported allergies was two. The EQ-5D index increased from 0.539 to 0.703 for cervical patients and from 0.530 to 0.676 for lumbar patients (pallergies predicted significantly higher odds of achieving the PDQ MCID (OR = 2.09, 95% CI 1.05-4.15, p=0.02 for cervical patients; OR = 1.30, 95% CI 1.03-1.68, p=0.03 for lumbar patients). However, this relationship was not durable for patients with follow-up exceeding 1 year. The log transformation of number of allergies for lumbar patients predicted significantly increased cost of admission (β=$3,597, pallergies correlate with subjective improvement in pain and disability following spine surgery and may serve as a marker of postoperative outcomes. The relationship between allergies and PDQ improvement may be secondary to the short-term expectation-actuality discrepancy, as this relationship was not durable beyond 1
Full Text Available Objective: Social iatrogenesis is a phenomenon in which normal behaviour is redefined as a medical condition, and people depend on physicians’ help even in doing their normal tasks. It poses considerable problems to public health. The aim of this study was to design and psychometrically evaluate an instrument for measuring factors associated with social iatrogenesis by physicians. Method: This study is a methodological research that was conducted during 2016- 2017 in Tabriz, Iran. At first, a questionnaire was developed after literature review to generate a preliminary item pool and then, content and face validity were performed. In the quantitative phase, reliability (internal consistency and test-retest analysis, validity and exploratory factor analysis were performed to assess psychometric properties of the instrument. Results: A 26-item questionnaire was reduced to 20-item after content validity. Exploratory factor analysis resulted in a three-factor solution (eigenvalues>1 explaining 41.94% of the cumulative variance. The Cronbach’s alpha coefficient showed excellent internal consistency (alpha=0.8, and test-retest of the scale with a 2-week interval indicated an appropriate stability (ICC=0.97. Conclusion: The anonymous third-party physicians’ report of exemplar cases of social iatrogenesis questionnaire is reliable and valid and can be used in health care systems.
Cabitza, Federico; Dui, Linda Greta
Collecting Patient Reported Outcomes (PROs) is generally seen as an effective way to assess the efficacy and appropriateness of medical interventions, from the patients' perspective. In 2016 the Galeazzi Orthopaedic Institute established a digitized program of PROs collection from spine, hip and knee surgery patients. In this work, we re-port the findings from the data analysis of the responses collected so far about the complementarity of PROs with respect to the data reported by the clinicians, and about the main biases that can undermine their validity and reliability. Although PROs collection is recognized as being far more complex than just asking the patients "how they feel" on a regular basis and it entails costs and devoted electronic platforms, we advocate their further diffusion for the assessment of health technology and clinical procedures.
Janssen, Stein J; Teunis, Teun; van Dijk, Eva; Ferrone, Marco L; Shin, John H; Hornicek, Francis; Schwab, Joseph H
General questionnaires are often used to assess quality of life in patients with spine metastases, although a disease-specific survey did not exist until recently. The Spine Oncology Study Group has developed an outcomes questionnaire (SOSG-OQ) to measure quality of life in these patients. However, a scoring system was not developed, and the questionnaire was not validated in a group of patients, nor was it compared with other general quality of life questionnaires such as the EuroQol 5 Dimensions (EQ-5D) questionnaire. Our primary null hypothesis is that there is no association between the SOSG-OQ and EQ-5D. Our secondary null hypothesis is that there is no difference in coverage and internal consistency between the SOSG-OQ and EQ-5D. We also assess coverage, consistency, and validity of the domains within the SOSG-OQ. A survey study from a tertiary care spine referral center was used for this study. The patient sample consisted of 82 patients with spine metastases, myeloma, or lymphoma. The SOSG-OQ (27 questions, 6 domains) score ranges from 0 to 80, with a higher score indicating worse quality of life. The EQ-5D (5 questions, 5 domains) index score ranges from 0 to 1, with a higher score indicating better quality of life. The association between the SOSG-OQ and EQ-5D index score was assessed using the Spearman rank correlation. Instrument coverage and precision were assessed by determining item completion rate, median score with range, and floor and ceiling effect. Internal consistency was assessed using Cronbach alpha. Multitrait analysis and exploratory factor analysis were used to analyze properties of the individual domains in the SOSG-OQ. The Spearman rank correlation between the SOSG-OQ and EQ-5D questionnaire was high (r=-0.83, pquality of life in patients with metastatic spine disease. The SOSG-OQ is superior to the EQ-5D in terms of coverage and internal consistency but consists of more questions. Copyright © 2015 Elsevier Inc. All rights reserved.
Yamamoto, Osamu; Fujita, Shoichiro
Affirmative response rates for diagnostic, therapeutic, and occupational ionizing radiation exposure were ascertained by surveying Hiroshima and Nagasaki aBCC-JNIH Adult Health Study subjects. Half reported diagnostic exposure since last visiting ABCC; 20%, within 3 months of interview. Rates were higher for A-bomb exposed than those not-in-city; possibly because of a higher disease rate or concern therefore among the A-bomb exposed group and/or A-bomb Survivors Medical Treatment Law handbooks' facilitating more examinations of the exposed. The rates did not differ among the A-bomb exposed groups. The respective Hiroshima and Nagasaki rates were 2.6%, and 1.6% for radiation therapy; and 0.5% and 0.2% for occupational exposure. Neither radiation therapy nor occupational exposure rates differed by A-bomb dose. (auth.)
Griffiths, C; Armstrong-James, L; White, P; Rumsey, N; Pleat, J; Harcourt, D
Patient reported outcome measures (PROMs) can identify important information about patient needs and therapeutic progress. The aim of this review was to identify the PROMs that are being used in child and adolescent burn care and to determine the quality of such scales. Computerised and manual bibliographic searches of Medline, Social Sciences Index, Cinahl, Psychinfo, Psycharticles, AMED, and HAPI, were used to identify English-language articles using English-language PROMs from January 2001 to March 2013. The psychometric quality of the PROMs was assessed. 23 studies met the entry criteria and identified 32 different PROMs (31 generic, 1 burns-specific). Overall, the psychometric quality of the PROMs was low; only two generic scales (the Perceived Stigmatisation Questionnaire and the Social Comfort Scale) and only one burns-specific scale (the Children Burn Outcomes Questionnaire for children aged 5-18) had psychometric evidence relevant to this population. The majority of PROMs did not have psychometric evidence for their use with child or adolescent burn patients. To appropriately identify the needs and treatment progress of child and adolescent burn patients, new burns-specific PROMs need to be developed and validated to reflect issues that are of importance to this population. Crown Copyright © 2014. Published by Elsevier Ltd. All rights reserved.
Moestrup, Kristian; Ghazanfar, Misbah N.; Thomsen, Simon F.
Chronic urticaria is an itching skin disease which persists for more than 6 weeks. Chronic urticaria has great impact on the daily life of the patient, and the fluctuating nature of the symptoms complicates the monitoring and treatment of the disease. Currently, there are no reliable biomarkers...... to identify and measure disease activity in chronic spontaneous urticaria. Consequently, use of patient-reported outcomes (PROs) is crucial when evaluating and monitoring different aspects of chronic urticaria such as disease activity/severity, disease control, and quality of life. We present an overview...... of seven different PROs used in chronic urticaria and highlight their strengths, limitations, and use in clinical practice and research....
Federal gas tax and public transit agreements were signed in 2005 by the Government of Canada, the Province of Ontario, the Association of Municipalities of Ontario (AMO) and the City of Toronto in order to address long-term community sustainability and invest in municipal infrastructure. The agreement committed to providing $1.9 billion to Ontario municipalities over a 5-year period. An additional $2.4 billion has been provided for a further 4-year period from 2010 to 2014. The funds are used by communities to invest in capacity building or environmentally sustainable municipal infrastructure projects. This report identified the intermediate and ultimate outcomes of the federal gas tax fund and public transit fund as of December 2008. Outcomes were presented in the categories of community energy systems, public transit, water and wastewater, solid waste, and roads and bridges. Funding highlights and economic spin-offs for the projects were also presented, as well as summaries of ancillary social outcomes. 6 tabs., 4 figs.
St-Pierre, Corinne; Desmeules, François; Dionne, Clermont E; Frémont, Pierre; MacDermid, Joy C; Roy, Jean-Sébastien
To conduct a systematic review of the psychometric properties (reliability, validity and responsiveness) of self-report questionnaires used to assess symptoms and functional limitations of individuals with rotator cuff (RC) disorders. A systematic search in three databases (Cinahl, Medline and Embase) was conducted. Data extraction and critical methodological appraisal were performed independently by three raters using structured tools, and agreement was achieved by consensus. A descriptive synthesis was performed. One-hundred and twenty articles reporting on 11 questionnaires were included. All questionnaires were highly reliable and responsive to change, and showed construct validity; seven questionnaires also shown known-group validity. The minimal detectable change ranged from 6.4% to 20.8% of total score; only two questionnaires (American Shoulder and Elbow Surgeon questionnaire [ASES] and Upper Limb Functional Index [ULFI]) had a measurement error below 10% of global score. Minimal clinically important differences were established for eight questionnaires, and ranged from 8% to 20% of total score. Overall, included questionnaires showed acceptable psychometric properties for individuals with RC disorders. The ASES and ULFI have the smallest absolute error of measurement, while the Western Ontario RC Index is one of the most responsive questionnaires for individuals suffering from RC disorders. All included questionnaires are reliable, valid and responsive for the evaluation of individuals with RC disorders. As all included questionnaires showed good psychometric properties for the targeted population, the choice should be made according to the purpose of the evaluation and to the construct being evaluated by the questionnaire. The WORC, a RC-specific questionnaire, appeared to be more responsive. It should therefore be used to evaluate change in time. If the evaluation is time-limited, shorter questionnaires or short versions should be considered (such as
Clement, R Carter; Welander, Adina; Stowell, Caleb; Cha, Thomas D; Chen, John L; Davies, Michelle; Fairbank, Jeremy C; Foley, Kevin T; Gehrchen, Martin; Hagg, Olle; Jacobs, Wilco C; Kahler, Richard; Khan, Safdar N; Lieberman, Isador H; Morisson, Beth; Ohnmeiss, Donna D; Peul, Wilco C; Shonnard, Neal H; Smuck, Matthew W; Solberg, Tore K; Stromqvist, Bjorn H; Hooff, Miranda L Van; Wasan, Ajay D; Willems, Paul C; Yeo, William; Fritzell, Peter
Outcome measurement has been shown to improve performance in several fields of healthcare. This understanding has driven a growing interest in value-based healthcare, where value is defined as outcomes achieved per money spent. While low back pain (LBP) constitutes an enormous burden of disease, no universal set of metrics has yet been accepted to measure and compare outcomes. Here, we aim to define such a set. An international group of 22 specialists in several disciplines of spine care was assembled to review literature and select LBP outcome metrics through a 6-round modified Delphi process. The scope of the outcome set was degenerative lumbar conditions. Patient-reported metrics include numerical pain scales, lumbar-related function using the Oswestry disability index, health-related quality of life using the EQ-5D-3L questionnaire, and questions assessing work status and analgesic use. Specific common and serious complications are included. Recommended follow-up intervals include 6, 12, and 24 months after initiating treatment, with optional follow-up at 3 months and 5 years. Metrics for risk stratification are selected based on pre-existing tools. The outcome measures recommended here are structured around specific etiologies of LBP, span a patient's entire cycle of care, and allow for risk adjustment. Thus, when implemented, this set can be expected to facilitate meaningful comparisons and ultimately provide a continuous feedback loop, enabling ongoing improvements in quality of care. Much work lies ahead in implementation, revision, and validation of this set, but it is an essential first step toward establishing a community of LBP providers focused on maximizing the value of the care we deliver.
Snyder, Claire F.; Jensen, Roxanne E.; Segal, Jodi B.; Wu, Albert W.
Patient-centered outcomes research (PCOR) aims to improve care quality and patient outcomes by providing information that patients, clinicians, and family members need regarding treatment alternatives, and emphasizing patient input to inform the research process. PCOR capitalizes on available data sources and generates new evidence to provide timely and relevant information and can be conducted using prospective data collection, disease registries, electronic medical records, aggregated results from prior research, and administrative claims. Given PCOR’s emphasis on the patient perspective, methods to incorporate patient-reported outcomes (PROs) are critical. PROs are defined by the U.S. Food & Drug Administration as “Any report coming directly from patients… about a health condition and its treatment.” However, PROs have not routinely been collected in a way that facilitates their use in PCOR. Electronic medical records, disease registries, and administrative data have only rarely collected, or been linked to, PROs. Recent technological developments facilitate the electronic collection of PROs and linkage of PRO data, offering new opportunities for putting the patient perspective in PCOR. This paper describes the importance of and methods for using PROs for PCOR. We (1) define PROs; (2) identify how PROs can be used in PCOR, and the critical role of electronic data methods for facilitating the use of PRO data in PCOR; (3) outline the challenges and key unanswered questions that need to be addressed for the routine use of PROs in PCOR; and (4) discuss policy and research interventions to accelerate the integration of PROs with clinical data. PMID:23774513
Croudace, Tim; Brazier, John; Gutacker, Nils; Street, Andrew; Robotham, Dan; Waterman, Samantha; Rose, Diana; Satkunanathan, Safarina; Wykes, Til; Nasr, Nasrin; Enderby, Pamela; Carlton, Jill; Rowen, Donna; Elliott, Jackie; Brazier, John
Table of contents S1 Using computerized adaptive testing Tim Croudace S2 Well-being: what is it, how does it compare to health and what are the implications of using it to inform health policy John Brazier O1 “Am I going to get better?”—Using PROMs to inform patients about the likely benefit of surgery Nils Gutacker, Andrew Street O2 Identifying Patient Reported Outcome Measures for an electronic Personal Health Record Dan Robotham, Samantha Waterman, Diana Rose, Safarina Satkunanathan, Til W...
Kottorp, Anders; Boettcher, Johanna; Andersson, Gerhard; Carlbring, Per
Research conducted during the last decades has provided increasing evidence for the use of psychological treatments for a number of psychiatric disorders and somatic complaints. However, by focusing only on the positive outcomes, less attention has been given to the potential of negative effects. Despite indications of deterioration and other adverse and unwanted events during treatment, little is known about their occurrence and characteristics. Hence, in order to facilitate research of negative effects, a new instrument for monitoring and reporting their incidence and impact was developed using a consensus among researchers, self-reports by patients, and a literature review: the Negative Effects Questionnaire. Participants were recruited via a smartphone-delivered self-help treatment for social anxiety disorder and through the media (N = 653). An exploratory factor analysis was performed, resulting in a six-factor solution with 32 items, accounting for 57.64% of the variance. The derived factors were: symptoms, quality, dependency, stigma, hopelessness, and failure. Items related to unpleasant memories, stress, and anxiety were experienced by more than one-third of the participants. Further, increased or novel symptoms, as well as lack of quality in the treatment and therapeutic relationship rendered the highest self-reported negative impact. In addition, the findings were discussed in relation to prior research and other similar instruments of adverse and unwanted events, giving credence to the items that are included. The instrument is presently available in eleven different languages and can be freely downloaded and used from www.neqscale.com. PMID:27331907
Rozental, Alexander; Kottorp, Anders; Boettcher, Johanna; Andersson, Gerhard; Carlbring, Per
Research conducted during the last decades has provided increasing evidence for the use of psychological treatments for a number of psychiatric disorders and somatic complaints. However, by focusing only on the positive outcomes, less attention has been given to the potential of negative effects. Despite indications of deterioration and other adverse and unwanted events during treatment, little is known about their occurrence and characteristics. Hence, in order to facilitate research of negative effects, a new instrument for monitoring and reporting their incidence and impact was developed using a consensus among researchers, self-reports by patients, and a literature review: the Negative Effects Questionnaire. Participants were recruited via a smartphone-delivered self-help treatment for social anxiety disorder and through the media (N = 653). An exploratory factor analysis was performed, resulting in a six-factor solution with 32 items, accounting for 57.64% of the variance. The derived factors were: symptoms, quality, dependency, stigma, hopelessness, and failure. Items related to unpleasant memories, stress, and anxiety were experienced by more than one-third of the participants. Further, increased or novel symptoms, as well as lack of quality in the treatment and therapeutic relationship rendered the highest self-reported negative impact. In addition, the findings were discussed in relation to prior research and other similar instruments of adverse and unwanted events, giving credence to the items that are included. The instrument is presently available in eleven different languages and can be freely downloaded and used from www.neqscale.com.
Steiner, T J; Buse, D C; Al Jumah, M; Westergaard, M L; Jensen, R H; Reed, M L; Prilipko, L; Mennini, F S; Láinez, M J A; Ravishankar, K; Sakai, F; Yu, S-Y; Fontebasso, M; Al Khathami, A; MacGregor, E A; Antonaci, F; Tassorelli, C; Lipton, R B
Headache disorders are both common and burdensome but, given the many people affected, provision of health care to all is challenging. Structured headache services based in primary care are the most efficient, equitable and cost-effective solution but place responsibility for managing most patients on health-care providers with limited training in headache care. The development of practical management aids for primary care is therefore a purpose of the Global Campaign against Headache. This manuscript presents an outcome measure, the Headache Under-Response to Treatment (HURT) questionnaire, describing its purpose, development, psychometric evaluation and assessment for clinical utility. The objective was a simple-to-use instrument that would both assess outcome and provide guidance to improving outcome, having utility across the range of headache disorders, across clinical settings and across countries and cultures. After literature review, an expert consensus group drawn from all six world regions formulated HURT through item development and item reduction using item-response theory. Using the American Migraine Prevalence and Prevention Study's general-population respondent panel, two mailed surveys assessed the psychometric properties of HURT, comparing it with other instruments as external validators. Reliability was assessed in patients in two culturally-contrasting clinical settings: headache specialist centres in Europe (n = 159) and primary-care centres in Saudi Arabia (n = 40). Clinical utility was assessed in similar settings (Europe n = 201; Saudi Arabia n = 342). The final instrument, an 8-item self-administered questionnaire, addressed headache frequency, disability, medication use and effect, patients' perceptions of headache "control" and their understanding of their diagnoses. Psychometric evaluation revealed a two-factor model (headache frequency, disability and medication use; and medication efficacy and headache control), with
Cuturilo, Goran; Vucinic, Olivera Kontic; Novakovic, Ivana; Ignjatovic, Svetlana; Mijovic, Marija; Sulovic, Nenad; Vukolic, Dusan; Komnenic, Milica; Tadic, Jasmina; Cetkovic, Aleksandar; Belic, Aleksandra; Ljubic, Aleksandar
This is the first study in Serbia and the region of South-East Europe dedicated to clients' perception of outcome and efficiency of prenatal and reproductive genetic counseling. The primary aim of this study was to assess overall value and success of genetic counseling in prenatal and reproductive care with regard to perceived personal control of clients, reflecting also in a part patient comprehension, knowledge retention, and empowerment in decision-making. The standardized Perceived Personal Control questionnaire (PPC) was used for the assessment of 239 female participants. First, we performed a complete validation of the psychometric characteristics of the Serbian-language version of the PPC questionnaire. The validation of the questionnaire permits other researchers from Serbian-speaking regions of South-East Europe to use this standard instrument to assess the effectiveness of prenatal genetic counseling in their communities and analyze advantages and disadvantages of their counseling models. We also measured social and demographic characteristics of participants. Further, we analyzed effects of our team-based prenatal and reproductive genetic counseling model through (a) calculation of PPC scores at three different stages (before initial, after initial, and before second counseling session), and (b) by assessing participants' responses by indication for referral (advanced maternal age, abnormal biochemical screening, family history of hereditary disorders, maternal exposure to drugs, exposure to radiation, exposure to infective agents, infertility or recurrent abortions, and miscellaneous). The results indicate that participants' knowledge after initial counseling increased significantly and after that remained stable and sustainable. A satisfactory level of confidence among participants had been achieved, in that many felt an increased sense of control over their situation and emotional response to it. Indirectly, these results indicate the success of a
van der Wal, Martha A.; Scheele, Fedde; Sch?nrock-Adema, Johanna; Jaarsma, A. Debbie C.; Cohen-Schotanus, Janke
Background: Within the current health care system, leadership is considered important for physicians. leadership is mostly self-taught, through observing and practicing. Does the practice environment offer residents enough opportunities to observe the supervisor leadership behaviours they have to learn? In the current study we investigate which leadership behaviours residents observe throughout their training, which behaviours supervisors report to display and whether residents and supervisor...
Full Text Available Health related quality of life (HRQL assessments during therapy for pediatric cancer provide valuable information to better understand the patient experience. Our objective was to determine the impact of a patient-reported outcome (PRO coordinator on HRQL questionnaire completion rates during a pediatric acute myeloid leukemia (AML trial.AAML1031 is a multicenter Children's Oncology Group therapeutic trial for de novo AML with a secondary aim to assess HRQL of children and adolescents treated with chemotherapy and hematopoietic stem cell transplantation (HSCT. Parents/guardians are the primary respondents and four questionnaires are administered at eight time points. The questionnaires are the PedsQL 4.0 Generic Core Scales, PedsQL 3.0 Acute Cancer Module, PedsQL Multidimensional Fatigue Scale, and the Pediatric Inventory for Parents. To improve response rates, a central PRO coordinator was instituted and reminded sites about upcoming and delinquent questionnaires. The proportion of HRQL questionnaires completed were compared prior to, and following institution of the PRO coordinator. This analysis evaluated the first five assessment time points.There were231 families who consented to participate in the HRQL aim. Overall response rates for all questionnaires were 73-83%. At time point 1, within 14 days of chemotherapy initiation, post-PRO coordinator completion rates were significantly higher for three of four questionnaires. However, the effect was not sustained and at time point 4, one month following last chemotherapy or HSCT, completion rates were significantly lower post-PRO coordinator for all four questionnaires.Addition of a central PRO coordinator did not result in sustained improvement in HRQL questionnaire completion rates. Efforts to improve response rates must consider other strategies.
Eckstein, Donna A; Wu, Rebecca L; Akinbiyi, Takintope; Silver, Lester; Taub, Peter J
Patient-reported outcomes in cleft lip and palate treatment are critical for patient care. Traditional surgical outcomes focused on objective measures, such as photographs, anatomic measurements, morbidity, and mortality. Although these remain important, they leave many questions unanswered. Surveys that include aesthetics, speech, functionality, self-image, and quality of life provide more thorough outcomes assessment. It is vital that reliable, valid, and comprehensive questionnaires are available to craniofacial surgeons. The authors performed a literature review to identify questionnaires validated in cleft lip and palate patients. Qualifying instruments were assessed for adherence to guidelines for development and validation by the scientific advisory committee and for content. The authors identified 44 measures used in cleft lip and palate studies. After 15 ad hoc questionnaires, eight generic instruments, 11 psychiatric instruments, and one non-English language questionnaire were excluded, nine measures remained. Of these, four were never validated in the cleft population. Analysis revealed one craniofacial-specific measure (Youth Quality of Life-Facial Differences), two voice-related measures (Patient Voice-Related Quality of Life and Cleft Audit Protocol for Speech-Augmented), and two oral health-related measures (Child Oral Health Impact Profile and Child Oral Health Quality of Life). The Youth Quality of Life-Facial Differences, Child Oral Health Impact Profile, and Child Oral Health Quality of Life questionnaires were sufficiently validated. None was created specifically for clefts, resulting in content limitations. There is a lack of comprehensive, valid, and reliable questionnaires for cleft lip and palate surgery. For thorough assessment of satisfaction, further research to develop and validate cleft lip and palate surgery-specific instruments is needed.
Goldner, G.; Wachter-Gerstner, N.; Wachter, S.; Dieckmann, K.; Janda, M.; Poetter, R.
Background: Radiotherapy-induced side effects are often scored retrospectively according to the EORTC/RTOG scores for organs at risk by reviewing the medical records. Some studies could prove an over- or underestimation of side effects as assessed by the medical professionals. The aim of this study was to prospectively evaluate differences in side effects as described by the doctors and the patients. Patients and Methods: 47 patients with prostate cancer were questioned about their side effects by a radiotherapist and asked to fill in a questionnaire at the start, in the middle and at the end of radiotherapy. The data of this questionnaire and the doctor's report were scored according to the German version of the EORTC/RTOG scores for gastrointestinal (GI) and genitourinary (GU) side effects and subsequently compared. We distinguished between ''moderate'' disagreement (better/worse by one grade, assessed by the doctor) and ''pronounced'' disagreement (better/worse by two grades, assessed by the doctor). Results: The number of GI and GU side effects increased during radiotherapy both according to data obtained from the doctor and the patient questionnaire. Comparing doctors' reports with patients' questionnaires, for GI side effects an agreement was found in 22/47 patients, ''moderately better'' scores by the doctor's report were found in 13/47 patients, and ''moderately worse'' scores in 9/47 patients on average. ''Pronouncedly better and worse'' scores were found in 2/47 patients. For GU side effects an agreement was seen in 22/47 patients, ''moderately better'' scores in 17/47 patients and ''moderately worse'' scores in 3/47 patients. Regarding GU side effects, only pronouncedly better scores, as assessed by the doctor, were found in a mean of 4/47 patients. If the EORTC/RTOG score is used in its original English version, a difference is found, particularly in the assessment of GU side effects, resulting in an higher amount of agreement concerning GU side effects
Mitchell, Jimmy L.; McCormick, Ernest J.
The development and analysis of the Professional and Managerial Position Questionnaire (PMPQ) is reported. PMPQ is intended to serve as a job analysis instrument for higher level occupations than those assessed by the Position Analysis Questionnaire (PAQ). Four approaches to job analysis are described with different emphases on the requirements of…
El-Azab, Ahmed S; Abd-Elsayed, Alaa A; Imam, Hala M K
Primary aim was to modify Pelvic Floor Distress Inventory (PFDI) and Pelvic Floor Impact Questionnaire (PFIQ) to assess pelvic organ prolapse (POP) in Arabic Muslim women. Secondary aim was to compare functional and anatomical outcomes of POP repair. Questionnaire. A characteristic (prayer) was added to PFIQ. Linguistic validation of questionnaires was then done. Twenty cases were enrolled in a pilot study to test internal consistency and reliability. Subsequent study. Prospective study included women with symptomatic POP >or= stage II. History, examination by POP-Q, and administration of PFDI and PFIQ, were done before and 6 months after surgery. Questionnaire. Internal consistency of added question was good (Cronbach alpha = 0.78). Test-retest reliability of individual PFIQ items was variable. Subsequent Study. Between September 2004 and February 2007, 78 consecutive women were included. Cystocele, rectocele, and no site predominated in 74.4%, 17.9% and 7.7% of cases, respectively. Preoperatively 19.2%, 15.4% and 47.4% reported stress, urge, and mixed incontinence, respectively. Overall and individual urinary symptoms scores improved significantly after surgery. There were significant improvements in individual symptoms of constipation, splint to defecate and losing not well formed stools. Low self-esteem was most negative impact of prolapse on quality of life (QoL) followed by prayer. After surgery 90% of subjects had anatomical cure. After surgery, QoL issues are significantly related to anatomic location of prolapse as determined by POP-Q. Modified PFIQ and PFDI are suitable to assess POP among Muslim women. Postoperatively, many prolapse-related symptoms and QoL significantly improve after surgery on the short term with an anatomic cure rate of 90%.
Harle, Christopher A; Listhaus, Alyson; Covarrubias, Constanza M; Schmidt, Siegfried Of; Mackey, Sean; Carek, Peter J; Fillingim, Roger B; Hurley, Robert W
In this case report, the authors describe the implementation of a system for collecting patient-reported outcomes and integrating results in an electronic health record. The objective was to identify lessons learned in overcoming barriers to collecting and integrating patient-reported outcomes in an electronic health record. The authors analyzed qualitative data in 42 documents collected from system development meetings, written feedback from users, and clinical observations with practice staff, providers, and patients. Guided by the Unified Theory on the Adoption and Use of Information Technology, 5 emergent themes were identified. Two barriers emerged: (i) uncertain clinical benefit and (ii) time, work flow, and effort constraints. Three facilitators emerged: (iii) process automation, (iv) usable system interfaces, and (v) collecting patient-reported outcomes for the right patient at the right time. For electronic health record-integrated patient-reported outcomes to succeed as useful clinical tools, system designers must ensure the clinical relevance of the information being collected while minimizing provider, staff, and patient burden. © The Author 2015. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For Permissions, please email: email@example.com.
Ostlie, Kristin; Franklin, Rosemary J; Skjeldal, Ola H; Skrondal, Anders; Magnus, Per
To describe physical function in adult acquired major upper-limb amputees (ULAs) by combining self-assessed arm function and physical measures obtained by clinical examinations; to estimate associations between background factors and self-assessed arm function in ULAs; and to assess whether clinical examination findings may be used to detect reduced arm function in unilateral ULAs. postal questionnaires and clinical examinations. Norwegian ULA population. Clinical examinations performed at 3 clinics. Questionnaires: population-based sample (n=224; 57.4% response rate). Clinical examinations: combined referred sample and convenience sample of questionnaire responders (n=70; 83.3% of those invited). SURVEY inclusion criteria: adult acquired major upper-limb amputation, resident in Norway, mastering of spoken and written Norwegian. Not applicable. The Disabilities of the Arm, Shoulder and Hand (DASH) Outcome Questionnaire, and clinical examination of joint motion and muscle strength with and without prostheses. Mean DASH score was 22.7 (95% confidence interval [CI], 20.3-25.0); in bilateral amputees, 35.7 (95% CI, 23.0-48.4); and in unilateral amputees, 22.1 (95% CI, 19.8-24.5). A lower unilateral DASH score (better function) was associated with paid employment (vs not in paid employment: adjusted regression coefficient [aB]=-5.40, P=.033; vs students: aB=-13.88, P=.022), increasing postamputation time (aB=-.27, P=.001), and Norwegian ethnicity (aB=-14.45, P<.001). At clinical examination, we found a high frequency of impaired neck mobility and varying frequencies of impaired joint motion and strength at the shoulder, elbow, and forearm level. Prosthesis wear was associated with impaired joint motion in all upper-limb joints (P<.006) and with reduced shoulder abduction strength (P=.002). Impaired without-prosthesis joint motion in shoulder flexion (ipsilateral: aB=12.19, P=.001) and shoulder abduction (ipsilateral: aB=12.01, P=.005; contralateral: aB=28.82, P=.004
Brochmann, Nana; Zwisler, Ann-Dorthe; Kjerholt, Mette; Flachs, Esben Meulengracht; Hasselbalch, Hans Carl; Andersen, Christen Lykkegaard
An Internet-based tool for reporting and analysing patient-reported outcomes (PROs) has been developed. The tool enables merging PROs with blood test results and allows for computation of treatment responses. Data may be visualized by graphical analysis and may be exported for downstream statistical processing. The aim of this study was to investigate, whether patients with myeloproliferative neoplasms (MPNs) were willing and able to use the tool and fill out questionnaires regularly. Participants were recruited from the outpatient clinic at the Department of Haematology, Roskilde University Hospital, Denmark. Validated questionnaires that were used were European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30, Myeloproliferative Neoplasm Symptom Assessment Form, Brief Fatigue Inventory and Short Form 36 Health Survey. Questionnaires were filled out ≥ 6 months online or on paper according to participant preference. Regularity of questionnaire submission was investigated, and participant acceptance was evaluated by focus-group interviews. Of 135 invited patients, 118 (87 %) accepted participation. One hundred and seven participants (91 %) preferred to use the Internet-based tool. Of the 118 enrolled participants, 104 (88 %) submitted PROs regularly ≥ 6 months. The focus-group interviews revealed that the Internet-based tool was well accepted. The Internet-based approach and regular collection of PROs are well accepted with a high participation rate, persistency and adherence in a population of MPN patients. The plasticity of the platform allows for adaptation to patients with other medical conditions.
Benjamin, Katy; Vernon, Margaret K; Patrick, Donald L; Perfetto, Eleanor; Nestler-Parr, Sandra; Burke, Laurie
Rare diseases (RDs) affect a small number of people within a population. About 5000 to 8000 distinct RDs have been identified, with an estimated 6% to 8% of people worldwide suffering from an RD. Approximately 75% of RDs affect children. Frequently, these conditions are heterogeneous; many are progressive. Regulatory incentives have increased orphan drug designations and approvals. To develop emerging good practices for RD outcomes research addressing the challenges inherent in identifying, selecting, developing, adapting, and implementing patient-reported outcome (PRO) and observer-reported outcome (ObsRO) assessments for use in RD clinical trials. This report outlines the challenges and potential solutions in determining clinical outcomes for RD trials. It follows the US Food and Drug Administration Roadmap to Patient-Focused Outcome Measurement in Clinical Trials. The Roadmap consists of three columns: 1) Understanding the Disease or Condition, 2) Conceptualizing Treatment Benefit, and 3) Selecting/Developing the Outcome Measure. Challenges in column 1 include factors such as incomplete natural history data and heterogeneity of disease presentation and patient experience. Solutions include using several information sources, for example, clinical experts and patient advocacy groups, to construct the condition's natural history and understand treatment patterns. Challenges in column 2 include understanding and measuring treatment benefit from the patient's perspective, especially given challenges in defining the context of use such as variations in age or disease severity/progression. Solutions include focusing on common symptoms across patient subgroups, identifying short-term outcomes, and using multiple types of COA instruments to measure the same constructs. Challenges in column 3 center around the small patient population and heterogeneity of the condition or study sample. Few disease-specific instruments for RDs exist. Strategies include adapting existing
Winkler, Laura Al-Dakhiel; Frølich, Jacob Stampe; Gudex, Claire; Hørder, Kirsten; Bilenberg, Niels; Støving, René Klinkby
Patient-reported outcome is increasingly applied in health sciences. Patients with eating disorders (EDs) characteristically have a different opinion of their needs to that of the health professionals, which can lead to ambivalence towards treatment and immense compliance difficulties. This cross-sectional study compared data assessed by the clinician to patient-reported measures in patients with a history of EDs. We included data from a cohort of patients with EDs (n=544) referred to a specialized ED unit in Denmark. Patient-reported measures included the Eating Disorder Inventory-2 (EDI-2) and the Short Form 36 (SF-36), and clinical data included remission status and body mass index (BMI). We found a positive association between BMI and EDI-2 scores for anorexia nervosa (AN) and eating disorder not otherwise specified (EDNOS), reflecting increasing ED symptomatology with increasing BMI. This association was not observed in bulimia nervosa (BN). We did not find a correlation between SF-36 scores and BMI in any of the diagnostic groups. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.
Petkovic, Jennifer; Barton, Jennifer L; Flurey, Caroline
, and (6) consideration of statistical power of subgroup analyses for outcome reporting. CONCLUSION: There is a need to (1) conduct a systematic review to assess how equity and population characteristics have been considered in PROM development and whether these differences influence the ranking...
Deana J. Hussamy
Full Text Available Although uncommon during pregnancy, cirrhosis results in multiple medical complications impacting both mother and fetus. Previous reports suggest liver dysfunction in pregnancy causes accumulation of neurotoxins within the maternal compartment that increases neonatal morbidity through placental transfer. We present a case of a 36-year-old G2P1 female with history of biliary cirrhosis presenting at 32-weeks' gestation with hepatic congestion progressing to hepatic encephalopathy prompting delivery. Umbilical cord sampling and postnatal infant testing demonstrated elevated ammonia levels which resolved by 12 hours of life without intervention. At discharge, the infant did not demonstrate evidence of neurologic deficit. We conclude that acute maternal hepatic encephalopathy and hyperammonemia due to chronic liver disease do not portend adverse neonatal outcomes, notably encephalopathy.
Rolfson, Ola; Bohm, Eric; Franklin, Patricia
The International Society of Arthroplasty Registries (ISAR) Patient-Reported Outcome Measures (PROMs) Working Group have evaluated and recommended best practices in the selection, administration, and interpretation of PROMs for hip and knee arthroplasty registries. The 2 generic PROMs in common use...... are the Short Form health surveys (SF-36 or SF-12) and EuroQol 5-dimension (EQ-5D). The Working Group recommends that registries should choose specific PROMs that have been appropriately developed with good measurement properties for arthroplasty patients. The Working Group recommend the use of a 1-item pain...... should consider the absolute level of pain, function, and general health status as well as improvement, missing data, approaches to analysis and case-mix adjustment, minimal clinically important difference, and minimal detectable change. The Working Group recommends data collection immediately before...
Full Text Available ABSTRACT Background: With a high rate of recurrence, urolithiasis is a chronic disease that impacts quality of life. The Patient Reported Outcomes Measurement Information System is an NIH validated questionnaire to assess patient quality of life. We evaluated the impact of urolithiasis on quality of life using the NIH-sponsored PROMIS-43 questionnaire. Materials and Methods: Patients reporting to the kidney stone clinic were interviewed to collect information on stone history and demographic information and were asked to complete the PROMIS-43 questionnaire. Quality of life scores were analyzed using gender and age matched groups for the general US population. Statistical comparisons were made based on demographic information and patient stone history. Statistical significance was P<0.05. Results: 103 patients completed the survey. 36% of respondents were male, the average age of the group was 52 years old, with 58% primary income earners, and 35% primary caregivers. 7% had never passed a stone or had a procedure while 17% passed 10 or more stones in their lifetime. Overall, pain and physical function were worse in patients with urolithiasis. Primary income earners had better quality of life while primary caregivers and those with other chronic medical conditions were worse. Patients on dietary and medical therapy had better quality of life scores. Conclusions: Urolithiasis patients subjectively have worse pain and physical function than the general population. The impact of pain on quality of life was greatest in those patients who had more stone episodes, underscoring the importance of preventive measures. Stone prevention measures improve quality of life.
Horner, Neilann K; Patterson, Ruth E; Neuhouser, Marian L; Lampe, Johanna W; Beresford, Shirley A; Prentice, Ross L
Errors in self-reported dietary intake threaten inferences from studies relying on instruments such as food-frequency questionnaires (FFQs), food records, and food recalls. The objective was to quantify the magnitude, direction, and predictors of errors associated with energy intakes estimated from the Women's Health Initiative FFQ. Postmenopausal women (n = 102) provided data on sociodemographic and psychosocial characteristics that relate to errors in self-reported energy intake. Energy intake was objectively estimated as total energy expenditure, physical activity expenditure, and the thermic effect of food (10% addition to other components of total energy expenditure). Participants underreported energy intake on the FFQ by 20.8%; this error trended upward with younger age (P = 0.07) and social desirability (P = 0.09) but was not associated with body mass index (P = 0.95). The correlation coefficient between reported energy intake and total energy expenditure was 0.24; correlations were higher among women with less education, higher body mass index, and greater fat-free mass, social desirability, and dissatisfaction with perceived body size (all P diet and disease association studies.
Makhni, Eric C; Higgins, John D; Hamamoto, Jason T; Cole, Brian J; Romeo, Anthony A; Verma, Nikhil N
To determine the patient compliance in completing electronically administered patient-reported outcome (PRO) scores following shoulder arthroscopy, and to determine if dedicated research assistants improve patient compliance. Patients undergoing arthroscopic shoulder surgery from January 1, 2014, to December 31, 2014, were prospectively enrolled into an electronic data collection system with retrospective review of compliance data. A total of 143 patients were included in this study; 406 patients were excluded (for any or all of the following reasons, such as incomplete follow-up, inaccessibility to the order sets, and inability to complete the order sets). All patients were assigned an order set of PROs through an electronic reporting system, with order sets to be completed prior to surgery, as well as 6 and 12 months postoperatively. Compliance rates of form completion were documented. Patients who underwent arthroscopic anterior and/or posterior stabilization were excluded. The average age of the patients was 53.1 years, ranging from 20 to 83. Compliance of form completion was highest preoperatively (76%), and then dropped subsequently at 6 months postoperatively (57%) and 12 months postoperatively (45%). Use of research assistants improved compliance by approximately 20% at each time point. No differences were found according to patient gender and age group. Of those completing forms, a majority completed forms at home or elsewhere prior to returning to the office for the clinic visit. Electronic administration of PRO may decrease the amount of time required in the office setting for PRO completion by patients. This may be mutually beneficial to providers and patients. It is unclear if an electronic system improves patient compliance in voluntary completion PRO. Compliance rates at final follow-up remain a concern if data are to be used for establishing quality or outcome metrics. Level IV, case series. Copyright © 2017 Arthroscopy Association of North
Billings, Martha E; Rosen, Carol L; Auckley, Dennis; Benca, Ruth; Foldvary-Schaefer, Nancy; Iber, Conrad; Zee, Phyllis C; Redline, Susan; Kapur, Vishesh K
Measures of health-related quality of life (HRQL) specific for sleep disorders have had limited psychometric evaluation in the context of randomized controlled trials (RCTs). We investigated the psychometric properties of the Functional Outcomes of Sleep Questionnaire (FOSQ) and Sleep Apnea Quality of Life Instrument (SAQLI). We evaluated the FOSQ and SAQLI construct and criterion validity, determined a minimally important difference, and assessed for associations of responsiveness to baseline subject characteristics and continuous positive airway pressure (CPAP) adherence in a RCT population. Secondary analysis of data collected in a multisite RCT of home versus laboratory-based diagnosis and treatment of obstructive sleep apnea (HomePAP trial). Individuals enrolled in the HomePAP trial (n = 335). N/A. The FOSQ and SAQLI subscores demonstrated high reliability and criterion validity, correlating with Medical Outcomes Study 36-Item Short Form Survey domains. Correlations were weaker with the Epworth Sleepiness Scale (ESS). Both the FOSQ and SAQLI scores improved after 3 mo with CPAP therapy. Averaging 4 h or more of CPAP use was associated with an increase in the FOSQ beyond the minimally important difference. Baseline depressive symptoms and sleepiness predicted FOSQ and SAQLI responsiveness; demographic, objective obstructive sleep apnea (OSA) severity and sleep habits were not predictive in linear regression. The FOSQ and SAQLI are responsive to CPAP intervention, with the FOSQ being more sensitive to differences in CPAP adherence than the SAQLI. These instruments provide unique information about health outcomes beyond that provided by changes in physiological measures of OSA severity (apnea-hypopnea index). Portable Monitoring for Diagnosis and Management of Sleep Apnea (HomePAP) URL: http://clinicaltrials.gov/show/NCT00642486. NIH clinical trials registry number: NCT00642486. © 2014 Associated Professional Sleep Societies, LLC.
Patient-reported outcomes (PROs), which provide a direct measure of a patient's health status or treatment preferences, represent a key component of the shift toward patient-centered health care. PROs can measure the state of a patient's disease-specific and overall health throughout the care continuum, enabling them to have a variety of uses for key health care stakeholders. Currently, PROs are used in drug development, aligning patient and clinician goals in care, quality-of-care measures, and coverage and reimbursement decisions. While there have been significant strides by key health care stakeholders to further the development and use of PROs, there are a number of challenges limiting more widespread use. In light of these current challenges and the potential for PROs to improve health care quality and value, on October 19, 2017, the Academy of Managed Care Pharmacy convened a forum of key stakeholders representing patients, payers, providers, government, and pharmaceutical companies to discuss and identify solutions to the current challenges and barriers to further use of PROs. These discussions informed the development of participants' ideal future state in which PROs maximize the goals of all health care stakeholders and the actionable steps required to make the future state a reality. While stakeholders shared unique perspectives throughout the forum, they had consensus on 2 overarching issues: the importance of PROs in defining value, improving patient care, and implementing value-based payment models and the need for strong organizational and operational systems to achieve optimal adoption and use. Participants identified several key challenges in PRO use and adoption: achieving a representative patient population, inclusion of PRO data in medication labels, the necessity for both standardized and customizable PROs, and operational and organizational barriers to collecting and analyzing PROs. To overcome these challenges, participants recommended that
Ranganathan, Kavitha; Vercler, Christian J; Warschausky, Seth A; MacEachern, Mark P; Buchman, Steven R; Waljee, Jennifer F
Health care policy makers are increasingly encouraging comparative effectiveness research. Little is known regarding comparative studies among children with cleft lip and/or palate. Cleft lip and/or palate profoundly influences self-perception and social functioning, and patient-reported outcomes provide a unique perspective on the success of reconstruction. The purpose of this study was to systematically review the literature regarding patient-reported outcomes among patients with cleft lip and/or palate. The authors reviewed articles from MEDLINE, Embase, and PsycInfo that examined the use of patient-reported outcome instruments for cleft lip and/or palate. Studies of patients with cleft lip and/or palate across any age that described the use of patient-completed measures in patient and control populations were included. A research librarian confirmed the search, and two independent, blinded reviewers performed full-text review. The authors identified 1979 articles and selected 30 for inclusion. Forty-two different assessment tools were used to analyze factors such as self-esteem, behavior, and social support. The Strengths and Difficulties Questionnaire was most commonly used (n = 7), followed by the Childhood Experience Questionnaire (n = 5), and the Satisfaction with Appearance survey (n = 4). Barriers to analysis included lack of standardization of survey administration, effect of publication bias, and variations in patient populations between individual studies. Comparative studies of patient-reported outcomes among patients with cleft lip and/or palate are infrequent. Many instruments exist to measure patient-reported outcomes in this population, but no specific standard exists. Identifying efficient and targeted forms of instrument selection and administration will enhance comparative studies among children with cleft lip and/or palate. Diagnostic, III.
Hanna, Andrew N; Datta, Jashodeep; Ginzberg, Sara; Dasher, Kevin; Ginsberg, Gregory G; Dempsey, Daniel T
Although laparoscopic Heller myotomy (LHM) has been the standard of care for achalasia, per oral endoscopic myotomy (POEM) has gained popularity as a viable alternative. This retrospective study aimed to compare patient-reported outcomes between LHM and POEM in a consecutive series of achalasia patients with more than 1 year of follow-up. We reviewed demographic and procedure-related data for patients who underwent either LHM or POEM for achalasia between January 2011 and May 2016. Phone interviews were conducted assessing post-procedure achalasia symptoms via the Eckardt score and achalasia severity questionnaire (ASQ). Demographics, disease factors, and survey results were compared between LHM and POEM patients using univariate analysis. Significant predictors of procedure failure were analyzed using univariate and multivariate analysis. There were no serious complications in 110 consecutive patients who underwent LHM or POEM during the study period, and 96 (87%) patients completed phone surveys. There was a nonsignificant trend toward better patient-reported outcomes with POEM. There were significant differences in patient characteristics including sex, achalasia type, mean residual lower esophageal pressure (rLESP), and follow-up time. The only univariate predictors of an unsatisfactory Eckardt score or ASQ were longer follow-up and lower rLESP, with follow-up length being the only predictor on multivariate analysis. There were significant demographic and clinical differences in patient selection for POEM vs LHM in our group. Although the 2 procedures have similar patient-reported effectiveness, subjective outcomes seem to decline as a result of time rather than procedure type. Copyright © 2018 American College of Surgeons. Published by Elsevier Inc. All rights reserved.
EPA is identifying human health "outcomes" as part of a significant shift in how the Agency frames questions and assesses its impact on environmental quality. These outcomes, while complementing traditional process indicators such as decreases in emissions, discharges and pollut...
Carlsen, Kathrine; Jensen, Anette Jung; Rugulies, Reiner; Christensen, Jane; Bidstrup, Pernille Envold; Johansen, Christoffer; Huitfeldt Madsen, Ida Elisabeth; Dalton, Susanne O
Although up to 80% of women can return to work after treatment for breast cancer, maintaining an affiliation to the labour market may be a challenge, as shown by the fact that the risks for unemployment and early retirement are increased in the years after treatment of cancer. It is important to understand the work problems experienced by cancer survivors, including their ability to work. The aim of this study was to determine whether the ability of long-term breast cancer survivors to work was different from that of a cancer-free control group. In this population-based cross-sectional questionnaire study, 776 breast cancer survivors were matched with 1552 cancer-free women. Women with breast cancer diagnosed in 1997-2000 were identified in the Danish Cancer Registry, and the cancer-free controls were sampled from the Central Population Registry. Work ability was measured from a single question on the 'work ability index'. Furthermore, the questionnaire contained questions on socioeconomic factors, health-related factors and factors related to the workplace. The overall response rate was 57% (493 survivors and 830 controls). After exclusions, the study population consisted of 170 survivors and 391 controls. Women with a diagnosis of breast cancer who had survived at least five years and had returned to work reported significantly poorer work ability than cancer-free controls. In models with adjustment for socioeconomic factors, health-related factors and support at work, the factors most strongly associated with impaired work ability were low income, fatigue and little help and support from a supervisor. Our findings indicate that the work ability of long-term breast cancer survivors who are disease-free and back in work is impaired in comparison with that of cancer-free women.
Heuvelman, Hein; Nazroo, James; Rai, Dheeraj
Epidemiological evidence suggests risk for psychosis varies with ethnicity in Western countries. However, there is little evidence to date on the cross-cultural validity of screening instruments used for such comparisons. Combining two existing UK population-based cohorts, we examined risk for reporting psychotic symptoms across White British (n = 3467), White Irish (n = 851), Caribbean (n = 1899), Indian (n = 2590), Pakistani (n = 1956) and Bangladeshi groups (n = 1248). We assessed the psychometric properties of the Psychosis Screening Questionnaire (PSQ) with a multiple-group confirmatory factor analysis, assessing the equivalence of factor loadings, response thresholds and residual variances in an analysis of measurement non-invariance. Compared with prevalence among British Whites (5.4%), the prevalence of self-reported psychotic symptoms was greater in the Caribbean group (12.7%, adjusted OR = 2.38 [95% CI 1.84-3.07]). Prevalence was also increased among Pakistani individuals (8.3%, adjusted OR = 1.36 [1.01-1.84]) although this difference was driven by a greater likelihood of reporting paranoid symptoms. PSQ items for thought interference, strange experience and hallucination were measured in equivalent ways across ethnic groups. However, our measurement models suggested that paranoid symptoms were measured less reliably among ethnic minorities than among British Whites and appeared to exaggerate latent differences between Pakistani and White British groups when measurement non-invariance was not accounted for. Notwithstanding evidence for measurement non-invariance, the greater risk for reporting psychotic symptoms among Caribbean individuals is unlikely to be an artefact of measurement. Greater residual variance in the recording of paranoid symptoms among ethnic minority respondents warrants caution in using this item to investigate ethnic variation in psychosis risk.
Tong, Allison; Manns, Braden; Hemmelgarn, Brenda; Wheeler, David C; Evangelidis, Nicole; Tugwell, Peter; Crowe, Sally; Van Biesen, Wim; Winkelmayer, Wolfgang C; O'Donoghue, Donal; Tam-Tham, Helen; Shen, Jenny I; Pinter, Jule; Larkins, Nicholas; Youssouf, Sajeda; Mandayam, Sreedhar; Ju, Angela; Craig, Jonathan C
Evidence-informed decision making in clinical care and policy in nephrology is undermined by trials that selectively report a large number of heterogeneous outcomes, many of which are not patient centered. The Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) Initiative convened an international consensus workshop on November 7, 2015, to discuss the identification and implementation of a potential core outcome set for all trials in hemodialysis. The purpose of this article is to report qualitative analyses of the workshop discussions, describing the key aspects to consider when establishing core outcomes in trials involving patients on hemodialysis therapy. Key stakeholders including 8 patients/caregivers and 47 health professionals (nephrologists, policymakers, industry, and researchers) attended the workshop. Attendees suggested that identifying core outcomes required equitable stakeholder engagement to ensure relevance across patient populations, flexibility to consider evolving priorities over time, deconstruction of language and meaning for conceptual consistency and clarity, understanding of potential overlap and associations between outcomes, and an assessment of applicability to the range of interventions in hemodialysis. For implementation, they proposed that core outcomes must have simple, inexpensive, and validated outcome measures that could be used in clinical care (quality indicators) and trials (including pragmatic trials) and endorsement by regulatory agencies. Integrating these recommendations may foster acceptance and optimize the uptake and translation of core outcomes in hemodialysis, leading to more informative research, for better treatment and improved patient outcomes. Copyright © 2016 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.
Tong, Allison; Manns, Braden; Hemmelgarn, Brenda; Wheeler, David C.; Evangelidis, Nicole; Tugwell, Peter; Crowe, Sally; Van Biesen, Wim; Winkelmayer, Wolfgang C.; O’Donoghue, Donal; Tam-Tham, Helen; Shen, Jenny; Pinter, Jule; Larkins, Nicholas; Youssouf, Sajeda; Mandayam, Sreedhar; Ju, Angela; Craig, Jonathan C.
Evidence-informed decision-making in clinical care and policy in nephrology is undermined by trials that selectively report a large number of heterogeneous outcomes, many of which are not patient-centered. The Standardized Outcomes in Nephrology−Hemodialysis (SONG-HD) Initiative convened an international consensus workshop on November 7, 2015, to discuss the identification and implementation of a potential core outcome set for all trials in hemodialysis. The purpose of this article is to report qualitative analyses of the workshop discussions, describing the key aspects to consider when establishing core outcomes in trials involving patients on hemodialysis. Key stakeholders including eight patients/caregivers and 47 health professionals (nephrologists, policy makers, industry, researchers) attended the workshop. Attendees suggested that identifying core outcomes required equitable stakeholder engagement to ensure relevance across patient populations; flexibility to consider evolving priorities over time; deconstruction of language and meaning for conceptual consistency and clarity; understanding of potential overlap and associations between outcomes; and an assessment of applicability to the range of interventions in hemodialysis. For implementation, they proposed that core outcomes must have simple, inexpensive and validated outcome measures that could be used in clinical care (quality ndicators) and trials (including pragmatic trials), and endorsement by regulatory agencies. Integrating these recommendations may foster acceptance and optimize the uptake and translation of core outcomes in hemodialysis, leading to more informative research, for better treatment, and improved patient outcomes. PMID:27497527
Cohen-Kettenis, Peggy T; Wallien, Madeleine; Johnson, Laurel L; Owen-Anderson, Allison F H; Bradley, Susan J; Zucker, Kenneth J
A one-factor, 14-item parent-report Gender Identity Questionnaire for Children (GIQC) was developed in a sample of 325 clinic-referred children with gender identity problems and 504 controls from Toronto, Canada (Johnson et al., 2004). In this study, we report a cross-national, cross-clinic comparative analysis of the GIQC on gender-referred children (N = 338) from Toronto and gender-referred children (N = 175) from Utrecht, The Netherlands. Across clinics, the results showed both similarities and differences. Gender-referred boys from Utrecht had a significantly higher total score (indicating more cross-gender behavior) than did gender-referred boys from Toronto, but there was no significant difference for girls. In the Toronto sample, the gender-referred girls had a significantly higher total score than the gender-referred boys, but there was no significant sex difference in the Utrecht sample. Across both clinics, gender-referred children who met the complete DSM criteria for gender identity disorder (GID) had a significantly higher cross-gender score than the gender-referred children who were subthreshold for GID (Cohen's d = 1.11). The results of this study provide the first empirical evidence of relative similarity in cross-gender behavior in a sample of gender-referred children from western Europe when compared to North American children. The results also provide some support for cross-clinic consistency in clinician-based diagnosis of GID.
Full Text Available Repetitive negative thinking (RNT is a transdiagnostic process involved in the risk, maintenance, and relapse of serious conditions including mood disorders, anxiety, eating disorders, and addictions. Processing mode theory provides a theoretical model to assess, research, and treat RNT using a transdiagnostic approach. Clinical researchers also often employ categorical approaches to RNT, including a focus on depressive rumination or worry, for similar purposes. Three widely used self-report questionnaires have been developed to assess these related constructs: the Ruminative Response Scale (RRT, the Perseverative Thinking Questionnaire (PTQ, and the Mini-Cambridge Exeter Repetitive Thought Scale (Mini-CERTS. Yet these scales have not previously been used in conjunction, despite useful theoretical distinctions only available in Mini-CERTS. The present validation of the methods in a Polish speaking population provides psychometric parameters estimates that contribute to current efforts to increase reliable replication of theoretical outcomes. Moreover, the following study aims to present particular characteristics and a comparison of the three methods. Although there has been some exploration of the categorical approach, the comparison of transdiagnostic methods is still lacking. These methods are particularly relevant for developing and evaluating theoretically based interventions like concreteness training, an emerging field of increasing interest, which can be used to address the maladaptive processing mode in RNT that can lead to depression and other disorders. Furthermore, the translation of these measures enables the examination of possible cross-cultural structural differences that may lead to important theoretical progress in the measurement and classification of RNT. The results support the theoretical hypothesis. As expected, the dimensions of brooding, general Repetitive Negative Thinking and Abstract Analytic Thinking, can all be
Nuebling, Matthias; Seidler, Andreas; Garthus-Niegel, Susan; Latza, Ute; Wagner, Mandy; Hegewald, Janice; Liebers, Falk; Jankowiak, Sylvia; Zwiener, Isabella; Wild, Philipp S; Letzel, Stephan
Several instruments have been developed to assess psychosocial workload. We compared two of these instruments, the Effort-Reward Imbalance (ERI) model and the Copenhagen Psychosocial Questionnaire (COPSOQ) with regard to congruent validity and internal validity. This analysis is based on a population-based sample of the baseline examination of 2,783 employees from the Gutenberg Health Study (GHS). About half of the participants completed the ERI questionnaire (n = 1,342), the other half completed the COPSOQ (n = 1,441). First, the two samples were compared and descriptive analyses were carried out calculating mean values for both instruments in general, then separately for age, gender and main occupational groups. Second, we analyzed the relationship between ERI and COPSOQ scales on the workplace situation and on the workplace outcomes: job satisfaction, general health, burnout, satisfaction with life, by applying stepwise logistic regression analysis. For the majority of occupations, high effort as reflected by the ERI corresponded with high demands as reflected by the COPSOQ. Comparably, high reward (according to ERI) yielded a good agreement with high "influence and development" (according to COPSOQ). However, we could also find differences between ERI and COPSOQ concerning the intensity of psychosocial workload in some occupations (e.g., physicians/pharmacists or warehouse managers/warehousemen/transport workers). These differences point to differing theoretical concepts of ERI and COPSOQ. When the ability of ERI and COPSOQ was examined to determine the associations with health and work outcomes, burnout could be better predicted by the COPSOQ; this might be due to the fact that COPSOQ comprises the constructs "work-privacy conflict" and "emotional demand", which are closely related to burnout. However, methodological differences between these instruments limit their direct comparability. The ERI and COPSOQ instrument yielded similar results for most
Højgaard, Pil; Klokker, Louise; Orbai, Ana-Maria; Holmsted, Kim; Bartels, Else M; Leung, Ying Ying; Goel, Niti; de Wit, Maarten; Gladman, Dafna D; Mease, Philip; Dreyer, Lene; Kristensen, Lars E; FitzGerald, Oliver; Tillett, William; Gossec, Laure; Helliwell, Philip; Strand, Vibeke; Ogdie, Alexis; Terwee, Caroline B; Christensen, Robin
An updated psoriatic arthritis (PsA) core outcome set (COS) for randomized controlled trials (RCTs) was endorsed at the Outcome Measures in Rheumatology (OMERACT) meeting in 2016. To synthesize the evidence on measurement properties of patient reported outcome measures (PROMs) for PsA and thereby contribute to development of a PsA core outcome measurement set (COMS) as described by the OMERACT Filter 2.0. A systematic literature search was performed in EMBASE, MEDLINE and PsycINFO on Jan 1, 2017 to identify full-text articles with an aim of assessing the measurement properties of PROMs in PsA. Two independent reviewers rated the quality of studies using the COnsensus based standards for the Selection of health Measurement INstruments (COSMIN) checklist, and performed a qualitative evidence synthesis. Fifty-five studies were included in the systematic review. Forty-four instruments and a total of 89 scales were analyzed. PROMs measuring COS domains with at least fair quality evidence for good validity and reliability (and no evidence for poor properties) included the Stockerau Activity Score for PsA (German), Psoriasis Symptom Inventory, visual analogue scale for Patient Global, 36 Item Short Form Health Survey Physical Function subscale, Health Assessment Questionnaire Disability Index, Bath Ankylosing Spondylitis Functional Index, PsA Impact of Disease questionnaire, PsA Quality of Life questionnaire, VITACORA-19, Functional Assessment of Chronic Illness Therapy Fatigue scale and Social Role Participation Questionnaire. At least one PROM with some evidence for aspects of validity and reliability was available for six of the eight mandatory domains of the PsA COS. Copyright © 2018 Elsevier Inc. All rights reserved.
Amin Mohamadi Hezaveh
Full Text Available More than 16,500 people lose their lives each year due to traffic crashes in Iran, which reflects one of the highest road traffic fatality rates in the world. The aim of the present study is to investigate the factors structure of an extended Driver Behaviour Questionnaire (DBQ and to examine the gender differences in the extracted factors among Iranian drivers. Further, the study tested the association between DBQ factors, demographic characteristics, and self-reported crashes. Based on Iranian driving culture, an extended (36 items Internet-based version of the DBQ was distributed among Iranian drivers. The results of Exploratory Factor Analysis based on a sample of 632 Iranians identified a five-factor solution named “Speeding and Pushing Violations”, “Lapses and Errors”, “Violations Causing Inattention”, “Aggressive Violations” and “Traffic Violations” which account for 44.7 percent of the total variance. The results also revealed that females were more prone to Lapses and Errors, whereas males reported more violations than females. Logistic regression analysis identified Violations Causing Inattention, Speeding and Pushing Violations as predictors of self-reported crashes in a three-year period. The results were discussed in line with road traffic safety countermeasures suitable for the Iranian context.
Luo, Yanhong; Yang, Jie; Zhang, Yanbo
Family support and patient satisfaction with treatment are crucial for aiding in the recovery from stroke. However, current validated stroke-specific questionnaires may not adequately capture the impact of these two variables on patients undergoing clinical trials of new drugs. Therefore, the aim of this study was to develop and evaluate a new stroke patient-reported outcome measure (Stroke-PROM) instrument for capturing more comprehensive effects of stroke on patients participating in clinical trials of new drugs. A conceptual framework and a pool of items for the preliminary Stroke-PROM were generated by consulting the relevant literature and other questionnaires created in China and other countries, and interviewing 20 patients and 4 experts to ensure that all germane parameters were included. During the first item-selection phase, classical test theory and item response theory were applied to an initial scale completed by 133 patients with stroke. During the item-revaluation phase, classical test theory and item response theory were used again, this time with 475 patients with stroke and 104 healthy participants. During the scale assessment phase, confirmatory factor analysis was applied to the final scale of the Stroke-PROM using the same study population as in the second item-selection phase. Reliability, validity, responsiveness and feasibility of the final scale were tested. The final scale of Stroke-PROM contained 46 items describing four domains (physiology, psychology, society and treatment). These four domains were subdivided into 10 subdomains. Cronbach's α coefficients for the four domains ranged from 0.861 to 0.908. Confirmatory factor analysis supported the validity of the final scale, and the model fit index satisfied the criterion. Differences in the Stroke-PROM mean scores were significant between patients with stroke and healthy participants in nine subdomains (P < 0.001), indicating that the scale showed good responsiveness. The Stroke
Winnette, Randall; Zárate, Victor; Machnicki, Gerardo; DeMuro, Carla; Gawlicki, Mary; Gnanasakthy, Ari
Patient-reported outcomes (PROs) are increasingly used to demonstrate the value of interventions and support health technology assessment (HTA). The objective of this work was to analyze trends regarding PROs in Latin America (LatAm), highlight challenges in the application of PROs in this region, and suggest solutions. A team of researchers with expertise in PROs conducted a nonsystematic PubMed literature search pertaining to the use of PROs in LatAm. The experts also drew on their experience working with PROs to assess the application of PROs in LatAm. The literature search yielded more than 4000 publications, with an increasing publication rate in recent years. PROs are being used in LatAm in various study types: instrument validation, phase III international clinical trials, health service research. A large Inter-American Development Bank study demonstrates the growing importance of PROs in the region. The growth in local value sets for the EuroQol five-dimensional questionnaire in LatAm reflects the regional emergence of HTA systems. Operational challenges relate to ensuring the use of good-quality questionnaires that, at a minimum, have undergone appropriate cultural adaptation and ideally have established psychometric properties. PROs are increasingly important in LatAm. Future efforts should aim to strengthen the operational and research infrastructure around PROs in the region. Innovation should be encouraged, including studying alternative methods of eliciting health utilities for economic evaluation. A wider scope around PRO uses for decision making by HTA bodies is an international trend with potential positive prospects in LatAm. Copyright © 2015 International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc. All rights reserved.
Oberguggenberger, Anne; Sztankay, Monika; Morscher, Raphael Johannes; Sperner-Unterweger, Barbara; Weber, Ingrid; Hubalek, Michael; Kemmler, Georg; Zschocke, Johannes; Martini, Caroline; Egle, Daniel; Dünser, Martina; Gamper, Eva; Meraner, Verena
We investigated the psychosocial consequences of genetic counseling and testing (GCT) for hereditary breast and ovarian cancer (HBOC) at follow-up in a "real-life" sample of counselees at an Austrian tertiary care center. The study cohort included counselees who had undergone genetic counseling for HBOC and completed a follow-up self-report questionnaire battery on psychosocial outcomes (quality of life, psychological distress, satisfaction with counseling and decisions). For comparison of distress, we recruited a reference sample of breast cancer survivors (BCS; n=665) who had not requested GCT in the same setting. Overall, counselees did not exhibit increased levels of anxiety and depression when compared to BCS. No specific follow-up deleterious psychosocial consequences were detected among the former group. Of the 137 counselees, 22.6% and 9.8% experienced clinically relevant levels of anxiety and depression, respectively, at an average follow-up time of 1.8years. However, both anxiety and depression significantly decreased with time and were alike between counselees with and without cancer diagnosis. Follow-up cancer worry seems to be significantly higher among counselees who had not undergone genetic testing or were undecided about it than among counselees who had been tested. Our results strongly support GCT as part of routine care for patients with HBOC. The risk factors of increased distress in specific subgroups of counselees, such as recent cancer diagnosis or uncertainty about testing, warrant further exploration and specific attention in clinical routines. Particularly, the psychological needs of undecided counselees warrant ongoing attention and potential follow-ups. Copyright © 2016 Elsevier Inc. All rights reserved.
Klaric Sever, Eva; Budimir, Zrinka; Cerovac, Matea; Stambuk, Mario; Par, Matej; Negovetic Vranic, Dubravka; Tarle, Zrinka
The objective of this study is to evaluate clinical and patient reported outcomes of different bleaching products. Thirty participants were randomly divided into three bleaching groups (n = 10). Bleaching was performed with high concentrations of hydrogen peroxide (HP) - Boost (40%) and Dash (30%), and with prefabricated splints Bite&White (6% HP). Tooth colour was measured before, immediately after, and 1 and 6 months after the bleaching by using classical shade guide and spectrophotometer. Tooth hypersensitivity was self-rated by patients on the Wong-Baker's face scale. Patient satisfaction was evaluated on a 7-point Likert-type scales that measured perceived performance and importance of different characteristics of bleaching treatment. All products were effective in teeth colour change (ΔE > 3.3), which was significantly higher for Boost (p = .016) and Dash (p = .024) than Bite&White treatment. Perception of hypersensitivity was the highest in Boost group, followed by Dash and Bite&White treatment. Most of the patients were satisfied with final tooth colour, length and comfort during treatment, but were dissatisfied with the stability of bleached tooth colour. Materials with the higher concentrations of bleaching agent demonstrated greater bleaching effectiveness than at-home bleaching product, but also a greater hypersensitivity. Lengthening the treatment process, but achieving a more stable tooth colour may improve the perceived value of a bleaching service.
Havelin, Leif I; Furnes, Ove; Baste, Valborg; Nordsletten, Lars; Hovik, Oystein; Dimmen, Sigbjorn
Background The surgical approach in total hip arthroplasty (THA) is often based on surgeon preference and local traditions. The anterior muscle-sparing approach has recently gained popularity in Europe. We tested the hypothesis that patient satisfaction, pain, function, and health-related quality of life (HRQoL) after THA is not related to the surgical approach. Patients 1,476 patients identified through the Norwegian Arthroplasty Register were sent questionnaires 1–3 years after undergoing THA in the period from January 2008 to June 2010. Patient-reported outcome measures (PROMs) included the hip disability osteoarthritis outcome score (HOOS), the Western Ontario and McMaster Universities osteoarthritis index (WOMAC), health-related quality of life (EQ-5D-3L), visual analog scales (VAS) addressing pain and satisfaction, and questions about complications. 1,273 patients completed the questionnaires and were included in the analysis. Results Adjusted HOOS scores for pain, other symptoms, activities of daily living (ADL), sport/recreation, and quality of life were significantly worse (p < 0.001 to p = 0.03) for the lateral approach than for the anterior approach and the posterolateral approach (mean differences: 3.2–5.0). These results were related to more patient-reported limping with the lateral approach than with the anterior and posterolateral approaches (25% vs. 12% and 13%, respectively; p < 0.001). Interpretation Patients operated with the lateral approach reported worse outcomes 1–3 years after THA surgery. Self-reported limping occurred twice as often in patients who underwent THA with a lateral approach than in those who underwent THA with an anterior or posterolateral approach. There were no significant differences in patient-reported outcomes after THA between those who underwent THA with a posterolateral approach and those who underwent THA with an anterior approach. PMID:24954494
Full Text Available Research conducted during the last decades has provided increasing evidence for the use of psychological treatments for a number of psychiatric disorders and somatic complaints. However, by focusing only on the positive outcomes, less attention has been given to the potential of negative effects. Despite indications of deterioration and other adverse and unwanted events during treatment, little is known about their occurrence and characteristics. Hence, in order to facilitate research of negative effects, a new instrument for monitoring and reporting their incidence and impact was developed using a consensus among researchers, self-reports by patients, and a literature review: the Negative Effects Questionnaire. Participants were recruited via a smartphone-delivered self-help treatment for social anxiety disorder and through the media (N = 653. An exploratory factor analysis was performed, resulting in a six-factor solution with 32 items, accounting for 57.64% of the variance. The derived factors were: symptoms, quality, dependency, stigma, hopelessness, and failure. Items related to unpleasant memories, stress, and anxiety were experienced by more than one-third of the participants. Further, increased or novel symptoms, as well as lack of quality in the treatment and therapeutic relationship rendered the highest self-reported negative impact. In addition, the findings were discussed in relation to prior research and other similar instruments of adverse and unwanted events, giving credence to the items that are included. The instrument is presently available in eleven different languages and can be freely downloaded and used from www.neqscale.com.
Although highly debated, the notion of the existence of an adaptive side to psychopathy is supported by some researchers. Currently, 2 instruments assessing psychopathic traits include an adaptive component, which might not cover the full spectrum of adaptive psychopathic traits. The Durand Adaptive Psychopathic Traits Questionnaire (DAPTQ; Durand, 2017 ) is a 41-item self-reported instrument assessing adaptive traits known to correlate with the psychopathic personality. In this study, I investigated in 2 samples (N = 263 and N = 262) the incremental validity of the DAPTQ over the Psychopathic Personality Inventory-Short Form (PPI-SF) and the Triarchic Psychopathy Measure (TriPM) using multiple criterion measures. Results showed that the DAPTQ significantly increased the predictive validity over the PPI-SF on 5 factors of the HEXACO. Additionally, the DAPTQ provided incremental validity over both the PPI-SF and the TriPM on measures of communication adaptability, perceived stress, and trait anxiety. Overall, these results support the validity of the DAPTQ in community samples. Directions for future studies to further validate the DAPTQ are discussed.
Bruun, Signe; Buhl, Susanne; Husby, Steffen
compared. DESIGN: The study population was part of the Odense Child Cohort. The four methods used were: (a) self-administered questionnaire 3 months postpartum, (b) self-administered questionnaire 18 months postpartum, (c) registrations from health visitors visiting the families several times within...... weeks, and the mean age when introduced to complementary foods from 19 to 21 weeks. The mean duration of any breastfeeding was 33 weeks across methods. CONCLUSIONS: Compared with the weekly SMS questions, the self-administered questionnaires and the health visitors' reports resulted in a greater...
Heeren, Alexandre; Deplus, Sandrine; Peschard, Virginie; Nef, François; Kotsou, Ilios; Dierickx, Christophe; Mondillon, Laurie; Robinaugh, Donald J.; Philippot, Pierre
Mindfulness training improves mental health and psychological functioning. Although several questionnaires have been developed to measure mindfulness, the Five Facet Mindfulness Questionnaire (FFMQ) is currently one of the most widely used scales. However, uncertainty remains about wheth- er the effects of mindfulness training can be unambiguously attributed to change in self-reported mindfulness. The present study was designed to answer three major questions: First, relative to a wait-list g...
Full Text Available Abstract Background Short instruments measuring frequency of specific foods, such as fruit and vegetable (FV, are increasingly used in interventions. The objective of the study was to verify the validity and test-retest reliability of such an instrument among pregnant women. Methods Pregnant women from the region of Quebec City, Quebec, Canada, were recruited through e-mails sent to female students and employees of the local university from October 2014 to April 2015. To assess the validity of the fruit and vegetable questionnaire (FVQ developed by Godin et al. (Can J Public Health 99: 494-498, 2008, pregnant women were asked in a first mailing to complete the FVQ assessing FV intake over the past 7 days and a 3-day estimated food record. A subsample (n = 33 also gave a fasting blood sample and completed a validated semi-quantitative FFQ administered by a trained registered dietitian during a visit at the research center. FV intakes for all instruments were calculated in terms of servings of FV based on Canada’s Food Guide definition of a serving of fruit or vegetable. In order to assess its test-retest reliability, respondents were asked to complete the FVQ 14 days later in a second mailing. Results Forty-eight pregnant women from all three trimesters completed the questionnaires in the first mailing. FV intake assessed using the FVQ was correlated to FV consumption measured using the food record (r = 0.34, p = 0.0180 and the FFQ (r = 0.61, p = 0.0002. Results were similar when controlling for energy intake and the experience of nausea in the past month. Only β-cryptoxanthin was significantly correlated to FV intake assessed by the FFQ when adjusted for the presence of nausea (r = 0.35, p = 0.0471. Data on the test-retest reliability was available for 44 women and the intra-class coefficient for the FVQ was 0.72 at a mean 28-day interval. Conclusions The FVQ has acceptable validity and test-retest reliability
Vézina-Im, Lydi-Anne; Godin, Gaston; Couillard, Charles; Perron, Julie; Lemieux, Simone; Robitaille, Julie
Short instruments measuring frequency of specific foods, such as fruit and vegetable (FV), are increasingly used in interventions. The objective of the study was to verify the validity and test-retest reliability of such an instrument among pregnant women. Pregnant women from the region of Quebec City, Quebec, Canada, were recruited through e-mails sent to female students and employees of the local university from October 2014 to April 2015. To assess the validity of the fruit and vegetable questionnaire (FVQ) developed by Godin et al. (Can J Public Health 99: 494-498, 2008), pregnant women were asked in a first mailing to complete the FVQ assessing FV intake over the past 7 days and a 3-day estimated food record. A subsample (n = 33) also gave a fasting blood sample and completed a validated semi-quantitative FFQ administered by a trained registered dietitian during a visit at the research center. FV intakes for all instruments were calculated in terms of servings of FV based on Canada's Food Guide definition of a serving of fruit or vegetable. In order to assess its test-retest reliability, respondents were asked to complete the FVQ 14 days later in a second mailing. Forty-eight pregnant women from all three trimesters completed the questionnaires in the first mailing. FV intake assessed using the FVQ was correlated to FV consumption measured using the food record (r = 0.34, p = 0.0180) and the FFQ (r = 0.61, p = 0.0002). Results were similar when controlling for energy intake and the experience of nausea in the past month. Only β-cryptoxanthin was significantly correlated to FV intake assessed by the FFQ when adjusted for the presence of nausea (r = 0.35, p = 0.0471). Data on the test-retest reliability was available for 44 women and the intra-class coefficient for the FVQ was 0.72 at a mean 28-day interval. The FVQ has acceptable validity and test-retest reliability values, but seems to underestimate FV servings in pregnant women
The purpose of the observational study was to determine whether interviewer race influences food frequency questionnaire (FFQ) reporting accuracy in a Deep South, largely African American cohort. A secondary analysis was conducted to investigate the influence of interviewer race on energy reporting ...
Kemp, Joanne L; Collins, Natalie J; Roos, Ewa M.
Patient-reported outcomes (PROs) are considered the gold standard when evaluating outcomes in a surgical population. While the psychometric properties of some PROs have been tested, the properties of newer PROs in patients undergoing hip arthroscopic surgery remain somewhat unknown.......Patient-reported outcomes (PROs) are considered the gold standard when evaluating outcomes in a surgical population. While the psychometric properties of some PROs have been tested, the properties of newer PROs in patients undergoing hip arthroscopic surgery remain somewhat unknown....
Smerecnik, Chris M R; Mesters, Ilse; Candel, Math J J M; De Vries, Hein; De Vries, Nanne K
The role of information processing in understanding people's responses to risk information has recently received substantial attention. One limitation of this research concerns the unavailability of a validated questionnaire of information processing. This article presents two studies in which we describe the development and validation of the Information-Processing Questionnaire to meet that need. Study 1 describes the development and initial validation of the questionnaire. Participants were randomized to either a systematic processing or a heuristic processing condition after which they completed a manipulation check and the initial 15-item questionnaire and again two weeks later. The questionnaire was subjected to factor reliability and validity analyses on both measurement times for purposes of cross-validation of the results. A two-factor solution was observed representing a systematic processing and a heuristic processing subscale. The resulting scale showed good reliability and validity, with the systematic condition scoring significantly higher on the systematic subscale and the heuristic processing condition significantly higher on the heuristic subscale. Study 2 sought to further validate the questionnaire in a field study. Results of the second study corresponded with those of Study 1 and provided further evidence of the validity of the Information-Processing Questionnaire. The availability of this information-processing scale will be a valuable asset for future research and may provide researchers with new research opportunities. © 2011 Society for Risk Analysis.
Full Text Available Hurricane Sandy caused extensive physical and economic damage; the long-term mental health consequences are unknown. Flooding is a central component of hurricane exposure, influencing mental health through multiple pathways that unfold over months after flooding recedes. Here we assess the concordance in self-reported and Federal Emergency Management (FEMA flood exposure after Hurricane Sandy and determine the associations between flooding and anxiety, depression, and post-traumatic stress disorder (PTSD. Self-reported flood data and mental health symptoms were obtained through validated questionnaires from New York City and Long Island residents (N = 1231 following Sandy. Self-reported flood data was compared to FEMA data obtained from the FEMA Modeling Task Force Hurricane Sandy Impact Analysis. Multivariable logistic regressions were performed to determine the relationship between flooding exposure and mental health outcomes. There were significant discrepancies between self-reported and FEMA flood exposure data. Self-reported dichotomous flooding was positively associated with anxiety (ORadj: 1.5 [95% CI: 1.1-1.9], depression (ORadj: 1.7 [1.3-2.2], and PTSD (ORadj: 2.5 [1.8-3.4], while self-reported continuous flooding was associated with depression (ORadj: 1.1 [1.01-1.12] and PTSD (ORadj: 1.2 [1.1-1.2]. Models with FEMA dichotomous flooding (ORadj: 2.1 [1.5-2.8] or FEMA continuous flooding (ORadj: 1.1 [1.1-1.2] were only significantly associated with PTSD. Associations between mental health and flooding vary according to type of flood exposure measure utilized. Future hurricane preparedness and recovery efforts must integrate micro and macro-level flood exposures in order to accurately determine flood exposure risk during storms and realize the long-term importance of flooding on these three mental health symptoms.
Kocks, Jan Willem H; van den Berg, Jan Willem K; Kerstjens, Huib AM; Uil, Steven M; Vonk, Judith M; de Jong, Ynze P; Tsiligianni, Ioanna G; van der Molen, Thys
Background Exacerbations of chronic obstructive pulmonary disease (COPD) are a major burden to patients and to society. Little is known about the possible role of day-to-day patient-reported outcomes during an exacerbation. This study aims to describe the day-to-day course of patient-reported health status during exacerbations of COPD and to assess its value in predicting clinical outcomes. Methods Data from two randomized controlled COPD exacerbation trials (n = 210 and n = 45 patients) were used to describe both the feasibility of daily collection of and the day-to-day course of patient-reported outcomes during outpatient treatment or admission to hospital. In addition to clinical parameters, the BORG dyspnea score, the Clinical COPD Questionnaire (CCQ), and the St George’s Respiratory Questionnaire were used in Cox regression models to predict treatment failure, time to next exacerbation, and mortality in the hospital study. Results All patient-reported outcomes showed a distinct pattern of improvement. In the multivariate models, absence of improvement in CCQ symptom score and impaired lung function were independent predictors of treatment failure. Health status and gender predicted time to next exacerbation. Five-year mortality was predicted by age, forced expiratory flow in one second % predicted, smoking status, and CCQ score. In outpatient management of exacerbations, health status was found to be less impaired than in hospitalized patients, while the rate and pattern of recovery was remarkably similar. Conclusion Daily health status measurements were found to predict treatment failure, which could help decision-making for patients hospitalized due to an exacerbation of COPD. PMID:23766644
Otero, Jesse E; Graves, Christopher M; Gao, Yubo; Olson, Tyler S; Dickinson, Christopher C; Chalus, Rhonda J; Vittetoe, David A; Goetz, Devon D; Callaghan, John J
Retrospective analyses have demonstrated correlation between patient-reported allergies and negative outcomes after total joint arthroplasty. We sought to validate these observations in a prospective cohort. One hundred forty-four patients undergoing total hip arthroplasty and 302 patients undergoing total knee arthroplasty were prospectively enrolled. Preoperatively, patients listed their allergies and completed the Medical Outcomes Study Short Form 36 (SF-36) and the Charlson Comorbidity Index (CCI) Questionnaire. At a mean of 17 months (range 12-25 months) postoperatively, SF-36, CCI, and Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) were obtained by telephone survey. Regression analysis was used to determine the strength of correlation between patient age, comorbidity burden, and number of allergies and outcome measurements. In 446 patients, 273 reported at least 1 allergy. The number of allergies reported ranged from 0 to 33. Penicillin or its derivative was the most frequently reported allergy followed by sulfa, environmental allergen, and narcotic pain medication. Patients reporting at least 1 allergy had a significantly lower postoperative SF-36 Physical Component Score compared to those reporting no allergies (51.3 vs 49.4, P = .01). The SF-36 postoperative Mental Component Score was no different between groups. Multivariate regression analysis showed that age and patient reported allergies, but not comorbidities, were independently associated with worse postoperative SF-36 Physical Component Summary (PCS) and WOMAC score. Patients with allergies experienced the same improvement in SF-36 PCS as those without an allergy. Comorbidities did not correlate with patient-reported function postoperatively. Patients who report allergies have lower postoperative outcome scores but may experience the same increment in improvement after total joint arthroplasty. Copyright © 2016 Elsevier Inc. All rights reserved.
Matsumoto, Mikio; Baba, Tomonori; Homma, Yasuhiro; Kobayashi, Hideo; Ochi, Hironori; Yuasa, Takahito; Behrend, Henrik; Kaneko, Kazuo
The Forgotten Joint Score-12 (FJS-12) is for patients to forget their artificial joint and is reportedly a useful patient-reported outcome tool for artificial joints. The purpose of this study was to determine whether the FJS-12 is as useful as the Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) or the Japanese Orthopaedic Association Hip Disease Evaluation Questionnaire (JHEQ) in Japan. All patients who visited our hospital's hip joint specialists following unilateral THA from August 2013 to July 2014 were evaluated. Medical staff members other than physicians administered three questionnaires. Items evaluated were (1) the reliability of the FJS-12 and (2) correlations between the FJS-12 and the total and subscale scores of the WOMAC or JHEQ. Of 130 patients, 22 were excluded. Cronbach's α coefficient was 0.97 for the FJS-12. The FJS-12 showed a significantly lower score than the WOMAC or JHEQ (p < 0.01). The FJS-12 was moderately correlated with the total WOMAC score (r = 0.522) and its subscale scores for "stiffness" (r = 0.401) and "function" (r = 0.539) and was weakly correlated with the score for "pain" (r = 0.289). The FJS-12 was favorably correlated with the total JHEQ score (r = 0.686) and its subscale scores (r = 0.530-0.643). The FJS-12 was correlated with and showed reliability similar to that of the JHEQ and WOMAC. The FJS-12, which is not affected by culture or lifestyle, may be useful in Japan.
Full Text Available Paul W Jones,1,2 Stephen Rennard,3,4 Maggie Tabberer,5 John H Riley,2 Mitra Vahdati-Bolouri,2 Neil C Barnes2,6 1Institute for Infection and Immunity, University of London, London, 2Global Respiratory Franchise, GlaxoSmithKline, Uxbridge, UK; 3Division of Pulmonary, Critical Care, Sleep and Allergy, Nebraska Medical Center, Omaha, NE, USA; 4Clinical Discovery Unit, AstraZeneca, Cambridge, 5Global R&D, GlaxoSmithKline, Uxbridge, 6William Harvey Institute, Bart’s and the London School of Medicine and Dentistry, London, UK Abstract: One of the challenges faced by the practising physician is the interpretation of patient-reported outcomes (PROs in clinical trials and the relevance of such data to their patients. This is especially true when caring for patients with progressive diseases such as COPD. In an attempt to incorporate the patient perspective, many clinical trials now include assessments of PROs. These are formalized methods of capturing patient-centered information. Given the importance of PROs in evaluating the potential utility of an intervention for a patient with COPD, it is important that physicians are able to critically interpret (and critique the results derived from them. Therefore, in this paper, a series of questions is posed for the practising physician to consider when reviewing the treatment effectiveness as assessed by PROs. The focus is on the St George’s Respiratory Questionnaire for worked examples, but the principles apply equally to other symptom-based questionnaires. A number of different ways of presenting PRO data are discussed, including the concept of the minimum clinically important difference, whether there is a ceiling effect to PRO results, and the strengths and weaknesses of responder analyses. Using a worked example, the value of including a placebo arm in a study is illustrated, and the influence of the study on PRO results is considered, in terms of the design, patient withdrawal, and the selection of
Kottner, J; Jacobi, L; Hahnel, E; Alam, M; Balzer, K; Beeckman, D; Busard, C; Chalmers, J; Deckert, S; Eleftheriadou, V; Furlan, K; Horbach, S E R; Kirkham, J; Nast, A; Spuls, P; Thiboutot, D; Thorlacius, L; Weller, K; Williams, H C; Schmitt, J
Results of clinical trials are the most important information source for generating external clinical evidence. The use of different outcomes across trials, which investigate similar interventions for similar patient groups, significantly limits the interpretation, comparability and clinical application of trial results. Core outcome sets (COSs) aim to overcome this limitation. A COS is an agreed standardized collection of outcomes that should be measured and reported in all clinical trials for a specific clinical condition. The Core Outcome Set Initiative within the Cochrane Skin Group (CSG-COUSIN) supports the development of core outcomes in dermatology. In the second CSG-COUSIN meeting held in 2017, 11 COS development groups working on skin diseases presented their current work. The presentations and discussions identified the following overarching methodological challenges for COS development in dermatology: it is not always easy to define the disease focus of a COS; the optimal method for outcome domain identification and level of detail needed to specify such domains is challenging to many; decision rules within Delphi surveys need to be improved; appropriate ways of patient involvement are not always clear. In addition, there appear to be outcome domains that may be relevant as potential core outcome domains for the majority of skin diseases. The close collaboration between methodologists in the Core Outcome Set Initiative and the international Cochrane Skin Group has major advantages for trialists, systematic reviewers and COS developers. © 2018 British Association of Dermatologists.
Monnette, Alisha; Zhang, Yichen; Shao, Hui; Shi, Lizheng
As medication adherence continues to be a prevalent issue in today's society, the methods used to monitor medication-taking behaviors are constantly being re-evaluated and compared in search of the 'gold standard' measure. Our review aimed to assess the current literature surrounding the correlation between self-reported questionnaires (SRQs) and electronic monitoring devices to determine if these measures produce similar results. We performed a literature search from 2009 to 2017 using PubMed, PubMed In-Process and Non-Indexed, EMBASE, Ovid MEDLINE, and Ovid MEDLINE In-Process. A keyword search using the terms 'patient compliance', 'treatment compliance', 'medication adherence', 'drug monitoring', 'drug therapy', 'electronic', 'digital', 'computer', 'monitor', 'monitoring', 'drug', 'pharmaceutical preparations', 'compliance', and 'medications' was done to capture all articles. We included articles measuring adherence using both monitoring devices and SRQs. Thirty-five articles were included in this review. The average difference in measured adherence rates between the two measures was 9.2% (range -66.3 to 61.5). A majority (62.7%) of articles reported moderate (n = 12; 27.9%), high (n = 5, 11.6%), or significant (n = 10, 23.3%) correlations between SRQs and monitoring devices. Results from our review are consistent with previous studies, as we found that many of our studies produced moderate to high correlation between both SRQs and monitoring devices [Farmer, Clin Ther 21(6):1074-90 (1999), IMS Institute for Healthcare Informatics. Avoidable costs in US health care (2012), Patel et al., Respirology 18(3):546-52 (2013), Siracusa et al., J Cyst Fibros 14(5):621-6 (2015), Smith et al., Int J Cardiol 145(1):122-3 (2010)]. Our findings demonstrate that self-reported adherence produces comparable results to electronic monitoring devices. As there is not yet a 'gold standard' measure for monitoring patient adherence, SRQs and Medication Event Monitoring Systems
Sprau Coulter, Tabitha L.
Energy audits and energy models are an important aspect of the retrofit design process, as they provide project teams with an opportunity to evaluate a facilities current building systems' and energy performance. The information collected during an energy audit is typically used to develop an energy model and an energy audit report that are both used to assist in making decisions about the design and implementation of energy conservation measures in a facility. The current lack of energy auditing standards results in a high degree of variability in energy audit outcomes depending on the individual performing the audit. The research presented is based on the conviction that performing an energy audit and producing a value adding energy model for retrofit buildings can benefit from a revised approach. The research was divided into four phases, with the initial three phases consisting of: 1.) process mapping activity - aimed at reducing variability in the energy auditing and energy modeling process. 2.) survey analysis -- To examine the misalignment between how industry members use the top energy modeling tools compared to their intended use as defined by software representatives. 3.) sensitivity analysis -- analysis of the affect key energy modeling inputs are having on energy modeling analysis results. The initial three phases helped define the need for an improved energy audit approach that better aligns data collection with facility owners' needs and priorities. The initial three phases also assisted in the development of a multi-criteria decision support tool that incorporates a House of Quality approach to guide a pre-audit planning activity. For the fourth and final research phase explored the impacts and evaluation methods of a pre-audit planning activity using two comparative energy audits as case studies. In each case, an energy audit professionals was asked to complete an audit using their traditional methods along with an audit which involved them first
Self, M M; Williams, A E; Czyzewski, D I; Weidler, E M; Shulman, R J
In functional gastrointestinal disorders, patient recall of symptoms drives diagnostic decisions and evaluation of treatment response, and research conclusions about potential treatments. In pediatrics, parent report also impacts assessment and care. Hence, identifying methods for accurately capturing patient and parent report of irritable bowel syndrome (IBS) symptoms is important. This study evaluated correspondence between retrospective questionnaire (parent and child report) and prospective diary data for children and adolescents with IBS. Participants included 50 children/adolescents with IBS per Rome III criteria. Children completed a 2-week pain and stool diary. Children and parents subsequently completed a 2-week recall questionnaire, reporting number of pain days, maximum pain, days without bowel movement, and days with diarrhea during the diary interval. Intraclass correlation coefficients and Bland-Altman plots assessed agreement. For pain and days without bowel movement, overall agreement between child recall questionnaire and child diary was strong, although under conditions likely to facilitate agreement and with individual variation observed. Parent recall and child diary were less concordant, and agreement about diarrhea was poor for parent and child. Age did not significantly correlate with agreement. Child questionnaire with short recall interval may be a reasonable approximation for diary data, although this varies by individual and replication/investigation of lengthier recall are needed. Relying on parent questionnaire does not appear a suitable proxy, and recall of stool form by both parent and child appears more problematic. These results combined with existing literature support use of diary data whenever possible. © 2015 John Wiley & Sons Ltd.
QUIROZ, Viviana; REINERO, Daniela; HERNÁNDEZ, Patricia; CONTRERAS, Johanna; VERNAL, Rolando; CARVAJAL, Paola
Abstract The major infectious diseases in Chile encompass the periodontal diseases, with a combined prevalence that rises up to 90% of the population. Thus, the population-based surveillance of periodontal diseases plays a central role for assessing their prevalence and for planning, implementing, and evaluating preventive and control programs. Self-report questionnaires have been proposed for the surveillance of periodontal diseases in adult populations world-wide. Objective This study aimed to develop and assess the content validity and reliability of a cognitively adapted self-report questionnaire designed for surveillance of gingivitis in adolescents. Material and Methods Ten predetermined self-report questions evaluating early signs and symptoms of gingivitis were preliminary assessed by a panel of clinical experts. Eight questions were selected and cognitively tested in 20 adolescents aged 12 to 18 years from Santiago de Chile. The questionnaire was then conducted and answered by 178 Chilean adolescents. Internal consistency was measured using the Cronbach’s alpha and temporal stability was calculated using the Kappa-index. Results A reliable final self-report questionnaire consisting of 5 questions was obtained, with a total Cronbach’s alpha of 0.73 and a Kappa-index ranging from 0.41 to 0.77 between the different questions. Conclusions The proposed questionnaire is reliable, with an acceptable internal consistency and a temporal stability from moderate to substantial, and it is promising for estimating the prevalence of gingivitis in adolescents. PMID:28877279
Full Text Available Abstract The major infectious diseases in Chile encompass the periodontal diseases, with a combined prevalence that rises up to 90% of the population. Thus, the population-based surveillance of periodontal diseases plays a central role for assessing their prevalence and for planning, implementing, and evaluating preventive and control programs. Self-report questionnaires have been proposed for the surveillance of periodontal diseases in adult populations world-wide. Objective This study aimed to develop and assess the content validity and reliability of a cognitively adapted self-report questionnaire designed for surveillance of gingivitis in adolescents. Material and Methods Ten predetermined self-report questions evaluating early signs and symptoms of gingivitis were preliminary assessed by a panel of clinical experts. Eight questions were selected and cognitively tested in 20 adolescents aged 12 to 18 years from Santiago de Chile. The questionnaire was then conducted and answered by 178 Chilean adolescents. Internal consistency was measured using the Cronbach’s alpha and temporal stability was calculated using the Kappa-index. Results A reliable final self-report questionnaire consisting of 5 questions was obtained, with a total Cronbach’s alpha of 0.73 and a Kappa-index ranging from 0.41 to 0.77 between the different questions. Conclusions The proposed questionnaire is reliable, with an acceptable internal consistency and a temporal stability from moderate to substantial, and it is promising for estimating the prevalence of gingivitis in adolescents.
Jafari, Peyman; Sharafi, Zahra; Bagheri, Zahra; Shalileh, Sara
Measurement equivalence is a necessary assumption for meaningful comparison of pediatric quality of life rated by children and parents. In this study, differential item functioning (DIF) analysis is used to examine whether children and their parents respond consistently to the items in the KINDer Lebensqualitätsfragebogen (KINDL; in German, Children Quality of Life Questionnaire). Two DIF detection methods, graded response model (GRM) and ordinal logistic regression (OLR), were applied for comparability. The KINDL was completed by 1,086 school children and 1,061 of their parents. While the GRM revealed that 12 out of the 24 items were flagged with DIF, the OLR identified 14 out of the 24 items with DIF. Seven items with DIF and five items without DIF were common across the two methods, yielding a total agreement rate of 50 %. This study revealed that parent proxy-reports cannot be used as a substitute for a child's ratings in the KINDL.
Full Text Available INTRODUCTION: This study aimed to cross-culturally adapt a Malay version of Knee Injury and Osteoarthritis Outcome Score (KOOS and to evaluate its psychometric properties in patients with knee osteoarthritis (OA. MATERIALS AND METHODS: The English version KOOS was translated into a Malay version using forward and backward translation process, followed by face validity and content validity. Two hundred and twenty-six knee OA patients attending the Outpatient and Orthopaedic Clinics, Universiti Sains Malaysia Hospital, completed the Malay version KOOS. Construct validity using confirmatory factor analysis and internal reliability assessment were performed. RESULTS: The results showed that the original five-factor model with 42 items failed to achieve acceptable values of the goodness of fit indices, indicating poor model fit. A new five-factor model of 26 items demonstrated acceptable level of goodness of fit (comparative fit index= 0.929, incremental fit index= 0.930, Tucker Lewis fit index= 0.920, root mean square error of approximation= 0.073 and Chisquared/ degree of freedom= 2.183 indices to signify a model fit. The Cronbach’s alpha value for the new model ranged from 0.776 to 0.946. The composite reliability values of each construct ranged between 0.819 and 0.921, indicating satisfactory to high level of convergent validity. CONCLUSION: The five-factor model with 26 items in the Malay version of KOOS questionnaire demonstrated a good degree of goodness of fit and was found to be valid, reliable and simple as an assessment tool for symptoms, pain, activity of daily living, sports and recreational activity and quality of life for Malaysian adults suffering from knee osteoarthritis.
Full Text Available William Montgomery,1 Jeffrey Vietri,2 Jing Shi,3 Kei Ogawa,4 Sawako Kariyasu,4 Levent Alev,4 Masaya Nakamura5 1Eli Lilly Australia Pty Ltd., Sydney, NSW, Australia; 2Health Outcomes Practice, Kantar Health, Horsham, PA, 3Health Outcomes Practice, Kantar Health, Princeton, NJ, USA; 4Eli Lilly Japan K.K., Kobe, Japan; 5Department of Orthopedic Surgery, Keio University School of Medicine, Tokyo, Japan Objective: The aim of this study was to quantify the impact of pain severity on patient-reported outcomes among individuals diagnosed with chronic low back pain in Japan. Methods: Data were provided by the 2012 Japan National Health and Wellness Survey (N=29,997, a web-based survey of individuals in Japan aged ≥18 years. This analysis included respondents diagnosed with low back pain of ≥3-month duration. Measures included the revised Medical Outcomes Study 36-Item Short-Form Survey Instrument, the Patient Health Questionnaire-9, the Generalized Anxiety Disorder-7 scale, the Work Productivity and Activity Impairment: General Health questionnaire, and self-reported all-cause health care visits (6 months. Generalized linear models were used to assess the relationship between outcomes and severity of pain in the past week as reported on a numeric rating scale ranging from 0 (no pain to 10 (pain as bad as you can imagine, controlling for length of diagnosis, sociodemographics, and general health characteristics. Results: A total of 290 respondents were included in the analysis; mean age was 56 years, 41% were females, and 56% were employed. Pain severity was 3/10 for the first quartile, 5/10 for the median, and 7/10 for the third quartile of this sample. Increasing severity was associated with lower scores for mental and physical component summaries and Short-Form 6D health utility, higher depression (Patient Health Questionnaire-9 and anxiety (Generalized Anxiety Disorder-7 scores, greater absenteeism and presenteeism, greater activity impairment
instruments do not necessarily have better discriminative or evaluative properties than older instruments. The development of new PRO tools, however, is crucial, not only to ensure that key COPD concepts are being reliably measured but also that the relevant treatment effects are being captured in clinical trials. In turn, this will help us to understand better the patient's experience of the disease.Keywords: patient-reported outcomes, chronic obstructive pulmonary disease, health-related quality of life, questionnaire development, dyspnea, exacerbations
Larsson, Maria E H; Kreuter, Margareta; Nordholm, Lena
Musculoskeletal disorders are prevalent and a major burden on individuals and society. Information on relationships of patient involvement and responsibility to outcome is limited. This study aimed to explore relationships between self-reported outcome of physiotherapy treatment and attitudes toward responsibility for musculoskeletal disorders. A cross-sectional postal survey design was used. Patients (n=615) from an outpatient physiotherapy clinic, who had finished their physiotherapy treatment within the last 6 months were sent a questionnaire that included the Attitudes regarding Responsibility for Musculoskeletal disorders instrument (ARM), self-reported outcome of treatment and sociodemographic data. A total of 279 (45%) completed forms were returned. Multiple logistic regression analysis was used. The patients' scores on the four dimensions of ARM ("responsibility self active," "responsibility out of my hands," "responsibility employer," and "responsibility medical professionals"), controlled for age, sex, education, and physical activity as well as for number of treatments, main treatment, and physiotherapist, were associated with the patients' self-reported treatment outcome. Patients who attributed responsibility more to themselves were more likely (OR 2.37 and over) to report considerable improvement as the outcome of physiotherapy treatment. Because this study was conducted at only one physiotherapy outpatient clinic and had a cross-sectional design, the results should be replicated in other settings. Because patients' attitudes regarding responsibility for musculoskeletal disorders can possibly affect the outcome of physiotherapy treatment, it might be useful to decide whether to systematically try to influence the person's attitude toward responsibility for the management of the disorder or to match treatment to attitude.
Xu, Gang; Baines, Richard; Westacott, Rachel; Selby, Nick; Carr, Susan
To assess the impact of a quality improvement project that used a multifaceted educational intervention on how to improve clinician's knowledge, confidence and awareness of acute kidney injury (AKI). 2 large acute teaching hospitals in England, serving a combined population of over 1.5 million people. All secondary care clinicians working in the clinical areas were targeted, with a specific focus on clinicians working in acute admission areas. A multifaceted educational intervention consisting of traditional didactic lectures, case-based teaching in small groups and an interactive web-based learning resource. We assessed clinicians' knowledge of AKI and their self-reported clinical behaviour using an interactive questionnaire before and after the educational intervention. Secondary outcome measures included clinical audit of patient notes before and after the intervention. 26% of clinicians reported that they were aware of local AKI guidelines in the preintervention questionnaire compared to 64% in the follow-up questionnaire (χ²=60.2, pquality improvement project utilising a multifaceted educational intervention improved awareness of AKI as demonstrated by changes in the clinician's self-reported management of patients with AKI. Elements of the project have been sustained beyond the project period, and demonstrate the power of quality improvement projects to help initiate changes in practice. Our findings are limited by confounding factors and highlight the need to carry out formal randomised studies to determine the impact of educational initiatives in the clinical setting.
Sonder, Judith M; Holman, Rebecca; Knol, Dirk L; Bosma, Libertje V A E; Polman, Chris H; Uitdehaag, Bernard M J
Proxy respondents, partners of multiple sclerosis (MS) patients, can provide valuable information on the MS patients' disease. In an earlier publication we found relatively good agreement on patient reported outcomes (PROs) measuring physical impact and functioning, but we found large differences on (neuro)psychological scales. We aim to identify patient and proxy related variables explaining differences between patients' and proxies' ratings on five PROs. We report on data from 175 MS patients and proxy respondents. Regression analyses were performed, using as dependent variable the mean differences on five scales: Physical and Psychological scale of the Multiple Sclerosis Impact Scale (MSIS-29), the Multiple Sclerosis Walking Scale (MSWS), Guy's Neurological Disability Scale (GNDS) and the Multiple Sclerosis Neuropsychological Screening Questionnaire (MSNQ). The independent variables were patient, proxy and disease related variables. Caregiver strain was significantly related to differences between patient and proxy scores for all five PROs. A higher level of patient anxiety on the HADS was linked to larger differences on all PROs except the GNDS. In addition, cognitive functioning, proxy depression, walking ability, proxy gender and MS related disability were contributing to the discrepancies. We found several patient and proxy factors that may contribute to discrepancies between patient and proxy scores on MS PROs. The most important factor is caregiver burden. © 2013 Elsevier B.V. All rights reserved.
Jonathan A. Eandi
Full Text Available OBJECTIVE: To evaluate our experience with tension-free transvaginal tape (TVT placement for the management of stress urinary incontinence (SUI in women who had previously undergone a failed midurethral synthetic sling (MUS procedure. MATERIALS AND METHODS: Ten women underwent retropubic TVT insertion for continued or recurrent SUI following a prior MUS procedure. No attempt was made to remove the previously placed sling at the time of surgery. A retrospective chart review was performed to obtain perioperative and follow-up patient information. Post-operatively, each patient completed a mailed incontinence questionnaire to assess self-reported urinary continence outcomes. RESULTS: All 10 women were available for follow-up at a mean period of 16 months (range 6 to 33. Four of the 10 patients achieved complete continence, and another three patients reported significantly improved continence and quality of life. Three women stated that their continence did not improve. CONCLUSIONS: TVT placement may be a viable option for the management of women with persistent or recurrent SUI following an initial MUS procedure.
Katzan, Irene L; Thompson, Nicolas R; Lapin, Brittany; Uchino, Ken
There is uncertainty regarding the clinical utility of the data obtained from patient-reported outcome measures (PROMs) for patient care. We evaluated the incremental information obtained by PROMs compared to the clinician-reported modified Rankin Scale (mRS). This was an observational study of 3283 ischemic stroke patients seen in a cerebrovascular clinic from September 14, 2012 to June 16, 2015 who completed the routinely collected PROMs: Stroke Impact Scale-16 (SIS-16), EQ-5D, Patient Health Questionnaire-9, PROMIS Physical Function, and PROMIS fatigue. The amount of variation in the PROMs explained by mRS was determined using r 2 after adjustment for age and level of stroke impairment. The proportion with meaningful change was calculated for patients with ≥2 visits. Concordance with change in the other scales and the ability to discriminate changes in health state as measured by c-statistic was evaluated for mRS versus SIS-16. Correlation between PROMs and mRS was highest for SIS-16 ( r =-0.64, P measures. PROMs provide additional valuable information compared to the mRS alone in stroke patients seen in the ambulatory setting. SIS-16 may have a better ability to identify change than mRS in health status of relevance to the patient. PROMs may be a useful addition to mRS in the assessment of health status in clinical practice. © 2017 The Authors. Published on behalf of the American Heart Association, Inc., by Wiley.
Malec, James F.; Kean, Jacob
This study examined outcomes for intensive residential and outpatient/community-based post-inpatient brain injury rehabilitation (PBIR) programs compared with supported living programs. The goal of supported living programs was stable functioning (no change). Data were obtained for a large cohort of adults with acquired brain injury (ABI) from the OutcomeInfo national database, a web-based database system developed through National Institutes of Health (NIH) Small Business Technology Transfer...
Copay, Anne G; Glassman, Steven D; Subach, Brian R; Berven, Sigurd; Schuler, Thomas C; Carreon, Leah Y
The impact of lumbar spinal surgery is commonly evaluated with three patient-reported outcome measures: Oswestry Disability Index (ODI), the physical component summary (PCS) of the Short Form of the Medical Outcomes Study (SF-36), and pain scales. A minimum clinically important difference (MCID) is a threshold used to measure the effect of clinical treatments. Variable threshold values have been proposed as MCID for those instruments despite a lack of agreement on the optimal MCID calculation method. This study has three purposes. First, to illustrate the range of values obtained by common anchor-based and distribution-based methods to calculate MCID. Second, to determine a statistically sound and clinically meaningful MCID for ODI, PCS, back pain scale, and leg pain scale in lumbar spine surgery patients. Third, to compare the discriminative ability of two anchors: a global health assessment and a rating of satisfaction with the results of the surgery. This study is a review of prospectively collected patient-reported outcomes data. A total of 454 patients from a large database of surgeries performed by the Lumbar Spine Study Group with a 1-year follow-up on either ODI or PCS were included in the study. Preoperative and 1-year postoperative scores for ODI, PCS, back pain scale, leg pain scale, health transition item (HTI) of the SF-36, and Satisfaction with Results scales. ODI, SF-36, and pain scales were administered before and 1 year after spinal surgery. Several candidate MCID calculation methods were applied to the data and the resulting values were compared. The HTI of the SF-36 was used as the anchor and compared with a second anchor (Satisfaction with Results scale). Potential MCID calculations yielded a range of values: fivefold for ODI, PCS, and leg pain, 10-fold for back pain. Threshold values obtained with the two anchors were very similar. The minimum detectable change (MDC) appears as a statistically and clinically appropriate MCID value. MCID values
Poulsen, Lotte; Klassen, Anne; Rose, Michael
BACKGROUND: Health-related quality of life and satisfaction with appearance are important outcomes in bariatric and body contouring surgery. To investigate these outcomes, scientifically sound and clinically meaningful patient-reported outcome instruments are needed. The authors measured health-r...
Rolfson, Ola; Eresian Chenok, Kate; Bohm, Eric
survey (SF-12) or the similar Veterans RAND 12-item health survey (VR-12). The most common specific PROMs were the Hip disability and Osteoarthritis Outcome Score (HOOS), the Knee injury and Osteoarthritis Outcome Score (KOOS), the Oxford Hip Score (OHS), the Oxford Knee Score (OKS), the Western Ontario...... of PROMs for hip and knee arthroplasty in registries worldwide. The 2 main types of PROMs include generic (general health) PROMs, which provide a measure of general health for any health state, and specific PROMs, which focus on specific symptoms, diseases, organs, body regions, or body functions...... all elective hip or knee arthroplasty patients and 6 registries collected PROMs for sample populations; 1 other registry had planned but had not started collection of PROMs. The most common generic instruments used were the EuroQol 5 dimension health outcome survey (EQ-5D) and the Short Form 12 health...
Responsiveness of a patient specific outcome measure compared with the Oswestry Disability Index v2.1 and Roland and Morris Disability Questionnaire for patients with subacute and chronic low back pain.
Frost, Helen; Lamb, Sarah E; Stewart-Brown, Sarah
A prospective cohort. The aim of this study was to compare the responsiveness of a patient specific outcome measure with the Oswestry Disability Index v2.1 (ODI) and the Roland and Morris Disability Questionnaire (RMDQ) for patients with mild to moderate subacute and chronic low back pain. Patient specific outcome measures allow individuals to select and rate the relative importance of activities they consider of greatest relevance. However, there is a paucity of research reporting the responsiveness of these measures for patient with back pain. Two hundred and one patients were assessed at baseline and 12 months using the patient specific activity questionnaire (PSAQ), the ODI, the RMDQ, and a transition rating scale. The latter was used to categorize patients into 3 groups (better, same or worse). Effect size statistics, receiver operating characteristic curves and 1-way between groups analysis of variance were used in the analysis. All instruments were able to detect improvements in back pain as measured by the transition rating scale. In this improved group effect sizes were large for the PSAQ (1.08 to 1.31) and ODI (-0.88 to -1.00) but only moderate for the RMDQ (-0.70 to -0.74). In the deteriorated group effect sizes were moderate to large for the ODI (0.61 to 1.16) and RMDQ (0.69 to 1.25), but small for the PSAQ (-0.16 to -0.26). The areas under receiver operator characteristic curves for the ODI, PSAQ, and RMDQ, respectively were: 0.75 (95% CI 0.68 to 0.82), 0.75 (95% CI 0.68 to 0.82) and 0.69 (95% CI 0.61 to 0.76). The PSAQ was highly responsive to change in patients who report improvement in back symptoms but unlike the ODI and RMDQ was unable to detect deterioration. Overall, the ODI was more responsive than either the PSAQ or the RMDQ.
Beckers, Laura; Speth, Lucianne; Rameckers, Eugène; Janssen-Potten, Yvonne
To produce a Dutch translation of the Lifestyle Assessment Questionnaire for children with cerebral palsy (LAQ-CP), adapted for cross-cultural differences. The translation process consisted of 6 stages, following a guideline for cross-cultural adaptations including duplicate forward- and back-translations, expert group review, pilot-testing, and a process audit. Several adaptations to the questionnaire were required due to cross-cultural differences. As a result of the pilot-test, the layout was adapted to the desires of the users. The process auditor stated that the process had been comprehensive and valued the quality of the work. The project resulted in a Dutch translation of the LAQ-CP, adapted for cross-cultural differences. Validation of the translated questionnaire is required before use in clinical practice and research is recommended (Dutch abstract, Supplemental Digital Content 1, available at: http://links.lww.com/PPT/A164).
Cole, Ansa Maer [Department of Radiation Oncology, Medical School Hannover, Hannover (Germany); Scherwath, Angela [Department of Medical Psychology, University Medical Centre Hamburg-Eppendorf, Hamburg (Germany); Ernst, Gundula [Department of Medical Psychology, Medical School Hannover, Hannover (Germany); Lanfermann, Heinrich [Institute for Neuroradiology, Medical School Hannover, Hannover (Germany); Bremer, Michael [Department of Radiation Oncology, Medical School Hannover, Hannover (Germany); Steinmann, Diana, E-mail: firstname.lastname@example.org [Department of Radiation Oncology, Medical School Hannover, Hannover (Germany)
Purpose: Patients with brain metastases may experience treatment-related cognitive deficits. In this study, we prospectively assessed the self-reported cognitive abilities of patients with brain metastases from any solid primary cancer before and after irradiation of the brain. Methods and Materials: The treatment group (TG) consisted of adult patients (n=50) with brain metastases who received whole or partial irradiation of the brain without having received prior radiation therapy (RT). The control group (CG) consisted of breast cancer patients (n=27) without cranial involvement who were treated with adjuvant RT. Patients were recruited between May 2008 and December 2010. Self-reported cognitive abilities were acquired before RT and 6 weeks, 3 months, and 6 months after irradiation. The information regarding the neurocognitive status was collected by use of the German questionnaires for self-perceived deficits in attention (FEDA) and subjectively experienced everyday memory performance (FEAG). Results: The baseline data showed a high proportion of self-perceived neurocognitive deficits in both groups. A comparison between the TG and the CG regarding the course of self-reported outcomes after RT showed significant between-group differences for the FEDA scales 2 and 3: fatigue and retardation of daily living activities (P=.002) and decrease in motivation (P=.032) with an increase of attention deficits in the TG, but not in the CG. There was a trend towards significance in FEDA scale 1: distractibility and retardation of mental processes (P=.059) between the TG and the CG. The FEAG assessment presented no significant differences. An additional subgroup analysis within the TG was carried out. FEDA scale 3 showed significant differences in the time-related progress between patients with whole-brain RT and those receiving hypofractionated stereotactic RT (P=.025), with less decrease in motivation in the latter group. Conclusion: Self-reported attention declined in
Cole, Ansa Maer; Scherwath, Angela; Ernst, Gundula; Lanfermann, Heinrich; Bremer, Michael; Steinmann, Diana
Purpose: Patients with brain metastases may experience treatment-related cognitive deficits. In this study, we prospectively assessed the self-reported cognitive abilities of patients with brain metastases from any solid primary cancer before and after irradiation of the brain. Methods and Materials: The treatment group (TG) consisted of adult patients (n=50) with brain metastases who received whole or partial irradiation of the brain without having received prior radiation therapy (RT). The control group (CG) consisted of breast cancer patients (n=27) without cranial involvement who were treated with adjuvant RT. Patients were recruited between May 2008 and December 2010. Self-reported cognitive abilities were acquired before RT and 6 weeks, 3 months, and 6 months after irradiation. The information regarding the neurocognitive status was collected by use of the German questionnaires for self-perceived deficits in attention (FEDA) and subjectively experienced everyday memory performance (FEAG). Results: The baseline data showed a high proportion of self-perceived neurocognitive deficits in both groups. A comparison between the TG and the CG regarding the course of self-reported outcomes after RT showed significant between-group differences for the FEDA scales 2 and 3: fatigue and retardation of daily living activities (P=.002) and decrease in motivation (P=.032) with an increase of attention deficits in the TG, but not in the CG. There was a trend towards significance in FEDA scale 1: distractibility and retardation of mental processes (P=.059) between the TG and the CG. The FEAG assessment presented no significant differences. An additional subgroup analysis within the TG was carried out. FEDA scale 3 showed significant differences in the time-related progress between patients with whole-brain RT and those receiving hypofractionated stereotactic RT (P=.025), with less decrease in motivation in the latter group. Conclusion: Self-reported attention declined in
Becker, Andreas; Wang, Biyao; Kunze, Barbara; Otto, Christiane; Schlack, Robert; Hölling, Heike; Ravens-Sieberer, Ulrike; Klasen, Fionna; Rogge, Jana; Isensee, Corinna; Rothenberger, Aribert; Bella Study Group, The
This study served to establish German norms for the Strengths and Difficulties Questionnaire self-report (SDQ-S) by using data from a representative epidemiological sample from the German National Health Interview and Examination Survey for Children and Adolescents (KiGGS study). Although the German version of the SDQ has been widely used and normative data for the parent version (SDQ-P) exist, no German norms for the self-report version have been reported, so that practitioners had to rely on the available British norms. In addition, we investigated whether sex- and age-specific norms are necessary. At the baseline of the KiGGS study, SDQ-S ratings were collected from n = 6,726 children and adolescents between 11 and 17 years (n = 3,440 boys und n = 3,286 girls). We assessed the internal consistency and age/sex effects of the SDQ-S. Confirmatory factor analysis was conducted to assess the factor structure of the SDQ-S. Banding scores were developed to differentiate children and adolescents with levels of difficulties and categorized them as "normal," "borderline," and "abnormal." General as well as age- and sex-specific bandings were created for both total score and subscales of SDQ-S. In addition, the German norms of the SDQ-S were compared with those of the UK, Norway, and Thailand. The five-factor solution of the SDQ-S (including Emotional symptoms, Conduct problems, Hyperactivity/Inattention, Peer problems, and Prosocial behavior) provided a satisfactory fit to the data. Moderate internal consistencies (Cronbach's α) were observed for the scales Emotional symptoms, Hyperactivity/Inattention, and Total difficulties score, whereas insufficient internal consistency was found for the scales Peer problems and Conduct problems. However, using McDonald's ω as a more appropriate measure of homogeneity, internal consistencies were found to be satisfactory for all subscales and for Total difficulties. Normative banding scores were established conservatively to avoid
Benchmarks for multidimensional recovery after burn injury in young adults: the development, validation, and testing of the American Burn Association/Shriners Hospitals for Children young adult burn outcome questionnaire.
Ryan, Colleen M; Schneider, Jeffrey C; Kazis, Lewis E; Lee, Austin; Li, Nien-Chen; Hinson, Michelle; Bauk, Helena; Peck, Michael; Meyer, Walter J; Palmieri, Tina; Pidcock, Frank S; Reilly, Debra; Tompkins, Ronald G
Although data exist on burn survival, there are little data on long-term burn recovery. Patient-centered health outcomes are useful in monitoring and predicting recovery and evaluating treatments. An outcome questionnaire for young adult burn survivors was developed and tested. This 5-year (2003-2008) prospective, controlled, multicenter study included burned and nonburned adults ages 19 to 30 years. The Young Adult Burn Outcome Questionnaires were completed at initial contact, 10 days, and 6 and 12 months. Factor analysis established construct validity. Reliability assessments used Cronbach α and test-retest. Recovery patterns were investigated using generalized linear models, with generalized estimating equations using mixed models and random effects. Burned (n = 153) and nonburned subjects (n = 112) completed 620 questionnaires (47 items). Time from injury to first questionnaire administration was 157 ± 36 days (mean ± SEM). Factor analysis included 15 factors: Physical Function, Fine Motor Function, Pain, Itch, Social Function Limited by Physical Function, Perceived Appearance, Social Function Limited by Appearance, Sexual Function, Emotion, Family Function, Family Concern, Satisfaction With Symptom Relief, Satisfaction With Role, Work Reintegration, and Religion. Cronbach α ranged from 0.72 to 0.92, with 11 scales >0.8. Test-retest reliability ranged from 0.29 to 0.94, suggesting changes in underlying health status after burns. Recovery curves in five domains, Itch, Perceived Appearance, Social Function Limited by Appearance, Family Concern, and Satisfaction with Symptom Relief, remained below the reference group at 24 months. The Young Adult Burn Outcome Questionnaire is a reliable and valid instrument for multidimensional functional outcomes assessment. Recovery in some domains was incomplete.
Saini, Pooja; Loke, Yoon K; Gamble, Carrol; Altman, Douglas G; Williamson, Paula R; Kirkham, Jamie J
To determine the extent and nature of selective non-reporting of harm outcomes in clinical studies that were eligible for inclusion in a cohort of systematic reviews. Cohort study of systematic reviews from two databases. Outcome reporting bias in trials for harm outcomes (ORBIT II) in systematic reviews from the Cochrane Library and a separate cohort of systematic reviews of adverse events. 92 systematic reviews of randomised controlled trials and non-randomised studies published in the Cochrane Library between issue 9, 2012 and issue 2, 2013 (Cochrane cohort) and 230 systematic reviews published between 1 January 2007 and 31 December 2011 in other publications, synthesising data on harm outcomes (adverse event cohort). A 13 point classification system for missing outcome data on harm was developed and applied to the studies. 86% (79/92) of reviews in the Cochrane cohort did not include full data from the main harm outcome of interest of each review for all of the eligible studies included within that review; 76% (173/230) for the adverse event cohort. Overall, the single primary harm outcome was inadequately reported in 76% (705/931) of the studies included in the 92 reviews from the Cochrane cohort and not reported in 47% (4159/8837) of the 230 reviews in the adverse event cohort. In a sample of primary studies not reporting on the single primary harm outcome in the review, scrutiny of the study publication revealed that outcome reporting bias was suspected in nearly two thirds (63%, 248/393). The number of reviews suspected of outcome reporting bias as a result of missing or partially reported harm related outcomes from at least one eligible study is high. The declaration of important harms and the quality of the reporting of harm outcomes must be improved in both primary studies and systematic reviews. © Saini et al 2014.
Gagnier, Joel J; Mullins, Megan; Huang, Hsiaomin; Marinac-Dabic, Danica; Ghambaryan, Anna; Eloff, Benjamin; Mirza, Faisal; Bayona, Manuel
While clinical research on total knee arthroplasty (TKA) outcomes is prevalent in the literature, studies often have poor methodological and reporting quality. A high-quality patient-reported outcome instrument is reliable, valid, and responsive. Many studies evaluate these properties, but none have done so with a systematic and accepted method. The objectives of this study were to identify patient-reported outcome measures (PROMs) for TKA, and to critically appraise, compare, and summarize their psychometric properties using accepted methods. MEDLINE, EMBASE, SCOPUS, Web of Science, PsycINFO, and SPORTDiscus were systematically searched for articles with the following inclusion criteria: publication before December 2014, English language, non-generic PRO, and evaluation in the TKA population. Methodological quality and evidence of psychometric properties were assessed with the COnsensus-based standards for the selection of health Status Measurement INstruments (COSMIN) checklist and criteria for psychometric evidence proposed by the COSMIN group and Terwee et al. One-hundred fifteen studies on 32 PROMs were included in this review. Only the Work, Osteoarthritis or joint-Replacement Questionnaire, the Oxford Knee Score, and the Western Ontario and McMaster Universities Arthritis Index had 4 or more properties with positive evidence. Most TKA PROMs have limited evidence for their psychometric properties. Although not all the properties were studied, the Work, Osteoarthritis or joint-Replacement Questionnaire, with the highest overall ratings, could be a useful PROM for evaluating patients undergoing TKA. The methods and reporting of this literature can improve by following accepted guidelines. Published by Elsevier Inc.
Jethwa, Krishan R; Kahila, Mohamed M; Mara, Kristin C; Harmsen, William S; Routman, David M; Pumper, Geralyn M; Corbin, Kimberly S; Sloan, Jeff A; Ruddy, Kathryn J; Hieken, Tina J; Park, Sean S; Mutter, Robert W
Accelerated partial breast irradiation (APBI) and whole breast irradiation (WBI) are treatment options for early-stage breast cancer. The purpose of this study was to compare patient-reported-outcomes (PRO) between patients receiving multi-channel intra-cavitary brachytherapy APBI or WBI. Between 2012 and 2015, 131 patients with ductal carcinoma in situ (DCIS) or early stage invasive breast cancer were treated with adjuvant APBI (64) or WBI (67) and participated in a PRO questionnaire. The linear analog scale assessment (LASA), harvard breast cosmesis scale (HBCS), PRO-common terminology criteria for adverse events- PRO (PRO-CTCAE), and breast cancer treatment outcome scale (BCTOS) were used to assess quality of life (QoL), pain, fatigue, aesthetic and functional status, and breast cosmesis. Comparisons of PROs were performed using t-tests, Wilcoxon rank-sum, Chi square, Fisher exact test, and regression methods. Median follow-up from completion of radiotherapy and questionnaire completion was 13.3 months. There was no significant difference in QoL, pain, or fatigue severity, as assessed by the LASA, between treatment groups (p > 0.05). No factors were found to be predictive of overall QoL on regression analysis. BCTOS health-related QoL scores were similar between treatment groups (p = 0.52).The majority of APBI and WBI patients reported excellent/good breast cosmesis, 88.5% versus 93.7% (p = 0.37). Skin color change (p = 0.011) and breast elevation (p = 0.01) relative to baseline were more common in the group receiving WBI. APBI and WBI were both associated with favorable patient-reported outcomes in early follow-up. APBI resulted in a lesser degree of patient-reported skin color change and breast elevation relative to baseline.
Lau, Heather; Belmatoug, Nadia; Deegan, Patrick; Goker-Alpan, Ozlem; Schwartz, Ida Vanessa D; Shankar, Suma P; Panahloo, Zoya; Zimran, Ari
Gaucher disease (GD) may worsen during pregnancy, leading to the discussion of continuing treatment during pregnancy. We examined fetal outcomes of pregnancies reported in the Gaucher Outcome Survey, an international GD-specific registry established in 2010. A total of 453 pregnancies were reported. Most pregnancies (336/453, 74.2%) were in women who did not receive GD-specific treatment during pregnancy, while enzyme replacement therapy (ERT) was received during 117/453 (25.8%) pregnancies. No pregnancies exposed to substrate reduction therapy were reported. The percentage of normal outcomes (live birth delivered at term with no congenital abnormalities) was similar in untreated and treated pregnancies (92.9% vs. 91.4%). The percentage of spontaneous abortions in untreated pregnancies was 3.6% (95% CI, 1.9%- 6.2%) compared with 6.9% (95% CI, 3.0%-13.1%) in treated pregnancies (p=0.1866). In women who received velaglucerase alfa <1month prior to conception and/or during pregnancy, 34/36 (94.4%) pregnancies had normal outcomes and 2 (5.6%) ended in spontaneous abortion. Normal outcomes were observed in the 20 pregnancies with velaglucerase alfa exposure starting <1month prior to conception and continuing through all trimesters. These observations, in addition to information in the literature, suggest that continuation of ERT during pregnancy may be appropriate for GD patients. Copyright © 2016 Shire Human Genetic Therapies, Inc. Published by Elsevier Inc. All rights reserved.
Septate uterus is mostly seen in women with infertility and recurrent pregnancy wastage. Reproductive outcome in women with septate uterus includes increased incidence of spontaneous abortion, premature birth, and abnormal foetal presentations. (1, 2) A case of septate uterus is presented and literature reviewed.
Larsen, Kristian; Hansen, Torben B; Søballe, Kjeld
PURPOSE: The purpose of this study was to describe patient-related functional outcomes after fast-track total knee arthroplasty and unicompartmental knee arthroplasty. Furthermore, we wanted to assess physical areas where an additional need for rehabilitation could be identified, and finally, we...
Collins, Natalie J; Roos, Ewa M.
Although the effectiveness of THA and TKA as interventions for end-stage degenerative joint disease has been well established, the use of instruments that measure outcome from the patient's perspective are relatively poorly investigated. Considering the increasing prevalence, associated risks, an...
This paper examines issues arising from the use of self-report questionnaires in cross-cultural contexts. The research draws from the extensive literature on cross-cultural leadership in business organizational culture as well as from educational cross-cultural contexts. It examines claims, drawn from business and educational contexts, that many…
Oude Voshaar, R.C.; Mol, A.J.J.; Gorgels, W.J.M.J.; Breteler, M.H.M.; Balkom, A.J.L.M. van; Lisdonk, E.H. van de; Kan, C.C.; Zitman, F.G.
The Benzodiazepine Dependence Self-Report Questionnaire (Bendep-SRQ) measures the severity of benzodiazepine (BZ) dependence on four domains: awareness of problematic use, preoccupation with the availability of BZ, lack of compliance with the therapeutic regimen, and withdrawal. Although promising
Oude Voshaar, R.C.; Mol, A.J.J.; Gorgels, W.J.M.J.; Breteler, M.H.M.; Balkom, A.J.L.M. van; Lisdonk, E.H. van de; Zitman, F.G.
The Benzodiazepine Dependence Self-Report Questionnaire (Bendep-SRQ) measures the severity of benzodiazepine (BZ) dependence on four domains: awareness of problematic use, preoccupation with the availability of BZ, lack of compliance with the therapeutic regimen, and withdrawal. Although promising
Roessler, K K; Andersen, T E; Lohmander, S; Roos, E M
Aim of the study was to access how individual's motives for participation in sports impact on self-reported outcomes 2 years after an anterior cruciate ligament injury. Based on a longitudinal cohort study, this secondary analysis present data from the Knee Anterior Cruciate Ligament, Nonsurgical versus Surgical Treatment (KANON) study, a randomized controlled trial. At baseline, 121 patients recorded in an initial questionnaire that their motives for sports participation fell into four categories: achievement, health, social integration, or fun and well-being. These four categories were used as variables in the analyses. All 121 subjects completed the 2-year follow-up. The largest improvement was seen in the Knee Injury and Osteoarthritis Outcome Score (KOOS) subscale sports and recreation function, with an effect size of 2.43. KOOS sports and recreation function was also the subscale score best predicted by the motives for sports participation. Baseline motives achievement and fun and well-being predicted worse levels of pain and function 2 years after the injury, even after adjusting for age, gender, treatment and baseline scores. Psychological aspects, such as motives for participation in sport, can be factors in predicting of patient-reported outcomes 2 years after injury. Evaluating motives for sports participation may help predict the outcome 2 years after ACL injury. © 2014 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.
Sulz, Lauren; Temple, Viviene; Gibbons, Sandra
The aim of this research was to develop measures to provide valid and reliable representation of the motivational states and psychological needs proposed by the self-determination theory (Deci & Ryan, 1985, 2000) within a physical education context. Based on theoretical underpinnings of self-determination theory, two questionnaires were…
SCHOLING, A; EMMELKAMP, PMG
This study was meant to investigate the psychometric properties and clinical utility of the Lehrer Woolfolk Anxiety Symptom Questionnaire (LWASQ), an instrument for assessment of somatic, behavioral and cognitive aspects of anxiety. Confirmatory factor analysis on data from social phobics (n = 108),
DeNisi, Angelo S.; McCormick, Ernest J.
The Position Analysis Questionnaire (PAQ) is a structured job analysis procedure that provides for the analysis of jobs in terms of each of 187 job elements, these job elements being grouped into six divisions: information input, mental processes, work output, relationships with other persons, job context, and other job characteristics. Two…
Marquardt, Lloyd D.; McCormick, Ernest J.
This study was concerned with the identification of the job dimension underlying the job elements of the Position Analysis Questionnaire (PAQ), Form B. The PAQ is a structured job analysis instrument consisting of 187 worker-oriented job elements which are divided into six a priori major divisions. The statistical procedure of principal components…
Ougrin, Dennis; Boege, Isabel
The Self Harm Questionnaire (SHQ) aiming at identification of self-harm in adolescents has been developed and piloted in a sample of 12-17 year olds (n = 100). The adolescents were recruited from both in- and outpatient psychiatric services. Concurrent validity of the SHQ was evaluated by comparing the SHQ results with recorded self harm in the…
Full Text Available Kathleen W Wyrwich,1 Holly Yu,2 Reiko Sato,2 John H Powers31Evidera, Inc., Bethesda, MD, USA; 2Pfizer Inc., Collegeville, PA, USA; 3George Washington University School of Medicine and Health Sciences, Washington, DC, USABackground: Millions of older adults who develop community-acquired pneumonia (CAP each year survive, but there is a large knowledge gap on the burden of CAP and the recovery process in survivors from the patient perspective.Methods: The newly developed CAP Burden of Illness Questionnaire was administered through a Web survey to a nationwide sample of US adults aged ≥50 years who were recently diagnosed with CAP. Survey respondents with unresolved symptoms or other CAP-related health problems completed a second survey 30 days later; a third survey was completed another 30 days later by respondents with unresolved symptoms or problems. Nationally representative results describing the average time to recovery of symptoms and other CAP-related problems were achieved using post-stratification weights.Results: Five hundred participants completed the initial survey. The time to resolution for the CAP symptoms of weakness, shortness of breath, and tiredness exceeded 3 weeks on average. There was an average of 13 days of absenteeism, and 3 weeks (mean =21 days before achieving full work/activity productivity after CAP. For participants with health conditions that worsened from pneumonia, chronic emphysema and chronic obstructive pulmonary disease took the longest to return to baseline (mean =60 and 52.4 days, respectively.Conclusion: The results from this study demonstrate that older adults surviving a CAP episode experience a significant multi-symptom illness with long recovery periods to achieve pre-CAP health and productivity. These findings highlight the need for further research on effective clinician–patient communication, the need for patient-centered outcomes in clinical trials for CAP therapeutics, adequate home care during
Tikka, Theofano; Webb, Joanne; Agostini, Paula; Kerr, Amy; Mannion, Glenn; Steyn, Richard S; Bishay, Ehab; Kalkat, Maninder S; Rajesh, Pala B; Naidu, Babu
Pectus is the most common congenital disorder. Awareness amongst primary care physicians and the general public is poor. NHS commissioning bodies plan to withdraw funding for this surgery because they deem a lack of sufficient evidence of benefit. The purpose of this study is to assess the effects of introducing a patient information website on referral and activity patterns and on patients reported outcomes. We produced an innovative information website, www.pectus.co.uk , accessible to the general public, providing information about pectus deformities; management options and advice about surgery. Referral patterns and number of cases where studied before and after the introduction of the website in 2010. Patients' satisfaction post-op was assessed using the Brompton's single step questionnaire (SSQ). The website had considerable traffic with 2179 hits in 2012, 4983 in 2013 and 7416 in 2014. This has led to 1421 contacts and 372 email enquiries. These emails have resulted in an increased number of patients who have been assessed and go on to have surgery. We asked 59 pectus excavatum patients who were operated from 2008 to 2014 to complete the SSQ. We received 32 replies. Eighty-four percent (16/19) of patients who visited the website and then underwent surgery, found the website useful. All patients scored satisfactorily in SSQ. Even though those who visited the website tended to be more satisfied with the surgical outcomes this did not reach statistical significance. This group of patients said that would have the operation again given the option compared to 76.9 % of the group who did not visit the website before surgery (p=0.031). Despite the fact that patients who visited the website experienced more post-operative complications were equally or more satisfied with post-operative outcomes. The overall SSQ obtainable score was not different for the two subgroups, being more widespread in the group that did not visit the website. The introduction of a pectus
Full Text Available Jan Willem H Kocks,1,2 Jan Willem K van den Berg,3 Huib AM Kerstjens,2,4 Steven M Uil,3 Judith M Vonk,2,5 Ynze P de Jong,3 Ioanna G Tsiligianni,1,2 Thys van der Molen1,2 1Department of General Practice, 2Groningen Research Institute for Asthma and COPD, University of Groningen, University Medical Center Groningen, Groningen, 3Department of Pulmonary Diseases, Isala Klinieken, Zwolle, 4Department of Pulmonary Diseases and Tuberculosis, 5Department of Epidemiology, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands Background: Exacerbations of chronic obstructive pulmonary disease (COPD are a major burden to patients and to society. Little is known about the possible role of day-to-day patient-reported outcomes during an exacerbation. This study aims to describe the day-to-day course of patient-reported health status during exacerbations of COPD and to assess its value in predicting clinical outcomes. Methods: Data from two randomized controlled COPD exacerbation trials (n = 210 and n = 45 patients were used to describe both the feasibility of daily collection of and the day-to-day course of patient-reported outcomes during outpatient treatment or admission to hospital. In addition to clinical parameters, the BORG dyspnea score, the Clinical COPD Questionnaire (CCQ, and the St George's Respiratory Questionnaire were used in Cox regression models to predict treatment failure, time to next exacerbation, and mortality in the hospital study. Results: All patient-reported outcomes showed a distinct pattern of improvement. In the multivariate models, absence of improvement in CCQ symptom score and impaired lung function were independent predictors of treatment failure. Health status and gender predicted time to next exacerbation. Five-year mortality was predicted by age, forced expiratory flow in one second % predicted, smoking status, and CCQ score. In outpatient management of exacerbations, health status was found
Steinhaus, Michael E; Makhni, Eric C; Lieber, Adam C; Kahlenberg, Cynthia A; Gulotta, Lawrence V; Romeo, Anthony A; Verma, Nikhil N
Outcomes assessments after superior labrum anterior and posterior (SLAP) tear/repair are highly varied, making it difficult to draw comparisons across the literature. This study examined the inconsistency in outcomes reporting in the SLAP tear literature. We hypothesize that there is significant variability in outcomes reporting and that although most studies may report return to play, time to return reporting will be highly variable. The PubMed, Medline, Scopus, and Embase databases were systematically reviewed for studies from January 2000 to December 2014 reporting outcomes after SLAP tear/repair. Two reviewers assessed each study, and those meeting inclusion criteria were examined for pertinent data. Outcomes included objective (range of motion, strength, clinical examinations, and imaging) and subjective (patient-reported outcomes, satisfaction, activities of daily living, and return to play) measures. Of the 56 included studies, 43% documented range of motion, 14% reported strength, and 16% noted postoperative imaging. There was significant variation in use of patient-reported outcomes measures, with the 3 most commonly noted measures reported in 20% to 55% of studies. Return to play was noted in 75% of studies, and 23% reported time to return, with greater rates in elite athletes. Eleven studies (20%) did not report follow-up or noted data with <12 months of follow-up. The SLAP literature is characterized by substantial variability in outcomes reporting, with time to return to play noted in few studies. Efforts to standardize outcomes reporting would facilitate comparisons across the literature and improve our understanding of the prognosis of this injury. Copyright © 2016 Journal of Shoulder and Elbow Surgery Board of Trustees. Published by Elsevier Inc. All rights reserved.
Lalor, Aislinn; Brown, Ted; Murdolo, Yuki
Occupational therapists often assess the motor skill performance of children referred to them as part of the assessment process. This study investigated whether children's, parents' and teachers' perceptions of children's motor skills using valid and reliable self/informant-report questionnaires were associated with and predictive of children's actual motor performance, as measured by a standardised performance-based motor skill assessment. Fifty-five typically developing children (8-12 years of age), their parents and classroom teachers were recruited to participate in the study. The children completed the Physical Self-Description Questionnaire (PSDQ) and the Self-Perception Profile for Children. The parents completed the Developmental Profile III (DP-III) and the Developmental Coordination Disorder Questionnaire, whereas the teachers completed the Developmental Coordination Disorder Questionnaire and the Teacher's Rating Scale of Child's Actual Behavior. Children's motor performance composite scores were determined using the Bruininks-Oseretsky Test of Motor Proficiency, Second Edition (BOT-2). Spearman's rho correlation coefficients were calculated to identify if significant correlations existed and multiple linear regression was used to identify whether self/informant report data were significant predictors of children's motor skill performance. The child self-report scores had the largest number of significant correlations with the BOT-2 composites. Regression analysis found that the parent report DP-III Physical subscale was a significant predictor of the BOT-2 Manual Coordination composite and the child-report questionnaire PSDQ. Endurance subscale was a significant predictor of the BOT-2 Strength and Agility composite. The findings support the use of top-down assessment methods from a variety of sources when evaluating children's motor abilities. © 2016 Occupational Therapy Australia.
Mohammad Ali Gozashti
Full Text Available Background: One of the best ways of achieving the patients’ views and expectations about the effects of a therapeutic or palliative intervention on their quality of life is using PatientReported Outcome Measures (PROMs. Poetry therapy as a psychotherapy intervention has been used for palliation of stressful conditions of several chronic diseases and disabilities. In the present study, we aimed to evaluate the effectiveness of group poetry therapy on the quality of life measures in women with breast cancer.Methods: A total of 30 women with breast cancer, undergoing chemotherapy at a referral center in the north of Iran, participated in the current quasi-experimental before-after study conducted in 2016. The study protocol included eight weekly sessions of group poetry therapy using poems from the great Persian poets. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC-QLQ-C30 was completed by the patients before beginning group poetry therapy and, twice more, one week and two months after the last session. Items of the questionnaire were manually scored and then analyzed using appropriate statistical tests in IBM SPSS Statistics for Windows, Version 21.0. Armonk, NY: IBM Corp.Results: A total of 28 patients participated in all the group poetry therapy sessions and completed the questionnaire. The mean and standard deviation of age were 45±66. The changes in the score of quality of life from 51.8 to 65.5 and 69 were observed to be significant in the one-week and two-month follow ups (both with P=0.002. Also, changes in symptom score from 34.5 to 23.7 (P=0.01 and functional score from 65.6 to 77.2 (P=0.01 in the two-month follow up were found to be statistically significant.Conclusion: Based on the findings of the study, it can be concluded that group poetry therapy, as a psychotherapy approach, can be used to improve quality of life in breast cancer patients.
Walton, Marc K; Powers, John H; Hobart, Jeremy; Patrick, Donald; Marquis, Patrick; Vamvakas, Spiros; Isaac, Maria; Molsen, Elizabeth; Cano, Stefan; Burke, Laurie B
An outcome assessment, the patient assessment used in an endpoint, is the measuring instrument that provides a rating or score (categorical or continuous) that is intended to represent some aspect of the patient's health status. Outcome assessments are used to define efficacy endpoints when developing a therapy for a disease or condition. Most efficacy endpoints are based on specified clinical assessments of patients. When clinical assessments are used as clinical trial outcomes, they are called clinical outcome assessments (COAs). COAs include any assessment that may be influenced by human choices, judgment, or motivation. COAs must be well-defined and possess adequate measurement properties to demonstrate (directly or indirectly) the benefits of a treatment. In contrast, a biomarker assessment is one that is subject to little, if any, patient motivational or rater judgmental influence. This is the first of two reports by the ISPOR Clinical Outcomes Assessment - Emerging Good Practices for Outcomes Research Task Force. This report provides foundational definitions important for an understanding of COA measurement principles. The foundation provided in this report includes what it means to demonstrate a beneficial effect, how assessments of patients relate to the objective of showing a treatment's benefit, and how these assessments are used in clinical trial endpoints. In addition, this report describes intrinsic attributes of patient assessments and clinical trial factors that can affect the properties of the measurements. These factors should be considered when developing or refining assessments. These considerations will aid investigators designing trials in their choice of using an existing assessment or developing a new outcome assessment. Although the focus of this report is on the development of a new COA to define endpoints in a clinical trial, these principles may be applied more generally. A critical element in appraising or developing a COA is to
Nguyen, Tam H.; Han, Hae-Ra; Kim, Miyong T.
The growing emphasis on patient-centered care has accelerated the demand for high-quality data from patient-reported outcome (PRO) measures. Traditionally, the development and validation of these measures has been guided by classical test theory. However, item response theory (IRT), an alternate measurement framework, offers promise for addressing practical measurement problems found in health-related research that have been difficult to solve through classical methods. This paper introduces foundational concepts in IRT, as well as commonly used models and their assumptions. Existing data on a combined sample (n = 636) of Korean American and Vietnamese American adults who responded to the High Blood Pressure Health Literacy Scale and the Patient Health Questionnaire-9 are used to exemplify typical applications of IRT. These examples illustrate how IRT can be used to improve the development, refinement, and evaluation of PRO measures. Greater use of methods based on this framework can increase the accuracy and efficiency with which PROs are measured. PMID:24403095
Full Text Available Maria Jose Santana,1 David Feeny,2 Sunita Ghosh,3 Dale C Lien41Faculty of Medicine, University of Calgary, Calgary, Alberta, Canada; 2Kaiser Permanente Center for Health Research, Portland, OR, USA; 3Cross Cancer Center, University of Alberta, Edmonton, Alberta, Canada; 4University of Alberta Hospital, Edmonton, Alberta, CanadaPurpose: Transplantation has the potential to produce profound effects on survival and health-related quality of life (HRQL. The inclusion of the patient’s perspective may play an important role in the assessment of the effectiveness of lung transplantation. Patient perspectives are assessed by patient-reported outcome measures, including HRQL measures. We describe how patients’ HRQL among different diagnosis groups can be used by clinicians to monitor and evaluate the outcomes associated with transplantation.Methods: Consecutive lung transplant recipients attending the lung transplant outpatient clinic in a tertiary institution completed the 15-item Health Utilities Index (HUI questionnaire on a touchscreen computer. The results were available to clinicians at every patient visit. The HUI3 covers a range of severity and comorbidities in eight dimensions of health status. Overall HUI3 scores are on a scale in which dead = 0.00 and perfect health = 1.00; disability categories range from no disability = 1 to severe disability <0.70. Single-attribute and overall HUI3 scores were used to compare patients’ HRQL among different diagnosis groups. Random-effect models with time since transplant as a random variable and age, gender, underlying diagnoses, infections, and broncholitis obliterans syndrome as fixed variables were built to identify determinants of health status at 2-years posttransplantation.Results: Two hundred and fourteen lung transplant recipients of whom 61% were male with a mean age of 52 (19–75 years were included in the study. Chronic obstructive pulmonary disease and cystic fibrosis patients displayed
Quiroz, Viviana; Reinero, Daniela; Hernández, Patricia; Contreras, Johanna; Vernal, Rolando; Carvajal, Paola
This study aimed to develop and assess the content validity and reliability of a cognitively adapted self-report questionnaire designed for surveillance of gingivitis in adolescents. Ten predetermined self-report questions evaluating early signs and symptoms of gingivitis were preliminary assessed by a panel of clinical experts. Eight questions were selected and cognitively tested in 20 adolescents aged 12 to 18 years from Santiago de Chile. The questionnaire was then conducted and answered by 178 Chilean adolescents. Internal consistency was measured using the Cronbach's alpha and temporal stability was calculated using the Kappa-index. A reliable final self-report questionnaire consisting of 5 questions was obtained, with a total Cronbach's alpha of 0.73 and a Kappa-index ranging from 0.41 to 0.77 between the different questions. The proposed questionnaire is reliable, with an acceptable internal consistency and a temporal stability from moderate to substantial, and it is promising for estimating the prevalence of gingivitis in adolescents.
Malec, James F; Kean, Jacob
This study examined outcomes for intensive residential and outpatient/community-based post-inpatient brain injury rehabilitation (PBIR) programs compared with supported living programs. The goal of supported living programs was stable functioning (no change). Data were obtained for a large cohort of adults with acquired brain injury (ABI) from the OutcomeInfo national database, a web-based database system developed through National Institutes of Health (NIH) Small Business Technology Transfer (STTR) funding for monitoring progress and outcomes in PBIR programs primarily with the Mayo-Portland Adaptability Inventory (MPAI-4). Rasch-derived MPAI-4 measures for cases from 2008 to 2014 from 9 provider organizations offering programs in 23 facilities throughout the United States were examined. Controlling for age at injury, time in program, and time since injury on admission (chronicity), both intensive residential (n = 205) and outpatient/community-based (n = 2781) programs resulted in significant (approximately 1 standard deviation [SD]) functional improvement on the MPAI-4 Total Score compared with supported living (n = 101) programs (F = 18.184, p MPAI-4 Ability (F = 14.135, p 1 year post-injury) showed significant, but smaller (approximately 0.5 SD) change on the MPAI-4 relative to supported living programs (F = 17.562, p < 0.001). Results indicate that intensive residential and outpatient/community-based PIBR programs result in substantial positive functional changes moderated by chronicity.
Spendelow, Jason S; Butler, Lisa J
The aim of the current study was to identify outcomes of a self-practice/self-reflection (SP/SR) exercise for trainee clinical psychologists. Thirty-two trainees enrolled in their first year of a UK university doctoral clinical psychology training programme completed an online questionnaire following an eight-week exercise. Findings indicated an endorsement of many previously reported benefits of exercise participation, but also the identification of negative outcomes. Thematic analysis of qualitative data revealed that outcomes could be grouped into two main thematic domains (individual task outcomes and task organization issues) along with several subordinate themes. SP/SR is a useful tool in the development of trainee CBT therapist competences. There has been limited previous recognition of potential negative outcomes from this type of exercise. However, these can provide additional impetus for therapist skill development.
Thorborg, Kristian; Roos, Ewa; Bartels, Else Marie
disability based on a systematic review of evidence of validity, reliability and responsiveness of these instruments. Methods MEDLINE, EMBASE, CINAHL, Cochrane Central Register of Controlled Trials, PsycINFO, SportsDiscus and Web of Science were all searched up to January 2009. Two reviewers independently...
Crump, R Trafford; Lai, Ernest; Liu, Guiping; Janjua, Arif; Sutherland, Jason M
Chronic rhinosinusitis (CRS) is a common condition for which there are numerous medical and surgical treatments. The 22-item Sino-Nasal Outcome Test (SNOT-22) is a patient-reported outcome measure often used with patients diagnosed with CRS. However, there are no utility values associated with the SNOT-22, limiting its use in comparative effectiveness research. The purpose of this study was to establish utilities for the SNOT-22 by mapping responses to utility values associated with the EuroQol-5-dimensional questionnaire-3-level version (EQ-5D-3L). This study used data collected from patients diagnosed with CRS awaiting bilateral endoscopic sinus surgery in Vancouver, Canada. Study participants completed both the SNOT-22 and the EQ-5D-3L. Ordinary least squares was used for 3 models that estimated the EQ-5D-3L utility values as a function of the SNOT-22 items. A total of 232 participants completed both the SNOT-22 and the EQ-5D-3L. As expected, there was a negative relationship between the SNOT-22 global scores and EQ-5D-3L utility values. Adjusted R 2 for the 3 models ranged from 0.28 to 0.33, and root mean squared errors between 0.23 and 0.24. A nonparametric bootstrap analysis demonstrated robustness of the findings. This study successfully developed a mapping model to associate utility values with responses to the SNOT-22. This model could be used to conduct comparative effectiveness research in CRS to evaluate the various interventions available for treating this condition. © 2017 ARS-AAOA, LLC.
Epis, Oscar Massimiliano; Casu, Cinzia; Belloli, Laura; Schito, Emanuela; Filippini, Davide; Muscarà, Marina; Gentile, Maria Giovanna; Perez Cagnone, Paula Carina; Venerelli, Chiara; Sonnati, Massimo; Schiavetti, Irene; Bruschi, Eleonora
In the management of chronic disease, new models for telemonitoring of patients combined with the choice of electronic patient-reported outcomes (ePRO) are being encouraged, with a clear improvement of both patients' and parents' quality of life. An Italian study demonstrated that ePRO were welcome in patients with rheumatoid arthritis (RA), with excellent matching data. The aim of this study is to evaluate the level of agreement between electronic and paper-and-pencil questionnaire responses. This is an observational prospective study. Patients were randomly assigned to first complete the questionnaire by paper and pencil and then by tablet or in the opposite order. The questionnaire consisted of 3 independent self-assessment visual rating scales (Visual Analog Scale, Global Health score, Patient Global Assessment of Disease Activity) commonly used in different adult patients, including those with rheumatic diseases. A total of 185 consecutive RA patients were admitted to hospital and were enrolled and completed the questionnaire both on paper and on electronic versions. For all the evaluated items, the intrarater degree of agreement between 2 approaches was found to be excellent (intraclass correlation coefficient>0.75, P<.001). An electronic questionnaire is uploaded in a dedicated Web-based tool that could implement a telemonitoring system aimed at improving the follow-up of RA patients. High intrarater reliability between paper and electronic methods of data collection encourage the use of a new digital app with consequent benefit for the overall health care system. ©Oscar Massimiliano Epis, Cinzia Casu, Laura Belloli, Emanuela Schito, Davide Filippini, Marina Muscarà, Maria Giovanna Gentile, Paula Carina Perez Cagnone, Chiara Venerelli, Massimo Sonnati, Irene Schiavetti, Eleonora Bruschi. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 16.11.2016.
Hopewell, Sally; Witt, Claudia M; Linde, Klaus; Icke, Katja; Adedire, Olubusola; Kirtley, Shona; Altman, Douglas G
Selective reporting of outcomes in clinical trials is a serious problem. We aimed to investigate the influence of the peer review process within biomedical journals on reporting of primary outcome(s) and statistical analyses within reports of randomised trials. Each month, PubMed (May 2014 to April 2015) was searched to identify primary reports of randomised trials published in six high-impact general and 12 high-impact specialty journals. The corresponding author of each trial was invited to complete an online survey asking authors about changes made to their manuscript as part of the peer review process. Our main outcomes were to assess: (1) the nature and extent of changes as part of the peer review process, in relation to reporting of the primary outcome(s) and/or primary statistical analysis; (2) how often authors followed these requests; and (3) whether this was related to specific journal or trial characteristics. Of 893 corresponding authors who were invited to take part in the online survey 258 (29%) responded. The majority of trials were multicentre (n = 191; 74%); median sample size 325 (IQR 138 to 1010). The primary outcome was clearly defined in 92% (n = 238), of which the direction of treatment effect was statistically significant in 49%. The majority responded (1-10 Likert scale) they were satisfied with the overall handling (mean 8.6, SD 1.5) and quality of peer review (mean 8.5, SD 1.5) of their manuscript. Only 3% (n = 8) said that the editor or peer reviewers had asked them to change or clarify the trial's primary outcome. However, 27% (n = 69) reported they were asked to change or clarify the statistical analysis of the primary outcome; most had fulfilled the request, the main motivation being to improve the statistical methods (n = 38; 55%) or avoid rejection (n = 30; 44%). Overall, there was little association between authors being asked to make this change and the type of journal, intervention, significance of the
Patel, Darshan P; Lenherr, Sara M; Stoffel, John T; Elliott, Sean P; Welk, Blayne; Presson, Angela P; Jha, Amitabh; Rosenbluth, Jeffrey; Myers, Jeremy B
The majority of spinal cord injury (SCI) patients have urinary issues, such as incontinence, retention, and frequency. These problems place a significant burden on patients' physical health and quality of life (QoL). There are a wide variety of bladder management strategies available to patients with no clear guidelines on appropriate selection. Inappropriate bladder management can cause hospitalizations and serious complications, such as urosepsis and renal failure. Patients believe that both independence and ability to carry out daily activities are just as important as physical health in selecting the right bladder-management strategy but little is known about patient's QoL with different bladder managements. Our study's aim is to assess patient reported QoL measures with various bladder managements after SCI. This manuscript describes the approach, study design and common data elements for our central study. This is a multi-institutional prospective cohort study comparing three different bladder-management strategies (clean intermittent catheterization, indwelling catheters, and surgery). Information collected from participants includes demographics, past medical and surgical history, injury characteristics, current and past bladder management, and SCI /bladder-related complications. Patient reported outcomes and QoL questionnaires were administered at enrollment and every 3 months for 1 year. Aims of this study protocol are: (1) to assess baseline QoL differences between the three different bladder-management strategies; (2) determine QoL impact when those using either form of catheter management undergo a surgery over the 1 year of follow-up among patients eligible for surgery; (3) assess the effects of changes in bladder management and complications on QoL over a 1-year longitudinal follow-up. By providing information about patient-reported outcomes associated with different bladder management strategies after SCI, and the impact of bladder management
Bazzo, Stefania; Battistella, Giuseppe; Riscica, Patrizia; Moino, Giuliana; Dal Pozzo, Giuseppe; Bottarel, Mery; Geromel, Mariasole; Czerwinsky, Loredana
Alcohol consumption during pregnancy can result in a range of harmful effects on the developing foetus and newborn, called Fetal Alcohol Spectrum Disorders (FASD). The identification of pregnant women who use alcohol enables to provide information, support and treatment for women and the surveillance of their children. The AUDIT-C (the shortened consumption version of the Alcohol Use Disorders Identification Test) is used for investigating risky drinking with different populations, and has been applied to estimate alcohol use and risky drinking also in antenatal clinics. The aim of the study was to investigate the reliability of a self-report Italian version of the AUDIT-C questionnaire to detect alcohol consumption during pregnancy, regardless of its use as a screening tool. The questionnaire was filled in by two independent consecutive series of pregnant women at the 38th gestation week visit in the two birth locations of the Local Health Authority of Treviso (Italy), during the years 2010 and 2011 (n=220 and n=239). Reliability analysis was performed using internal consistency, item-total score correlations, and inter-item correlations. The "discriminatory power" of the test was also evaluated. Results. Overall, about one third of women recalled alcohol consumption at least once during the current pregnancy. The questionnaire had an internal consistency of 0.565 for the group of the year 2010, of 0.516 for the year 2011, and of 0.542 for the overall group. The highest item total correlations' coefficient was 0.687 and the highest inter-item correlations' coefficient was 0.675. As for the discriminatory power of the questionnaire, the highest Ferguson's delta coefficient was 0.623. These findings suggest that the Italian self-report version of the AUDIT-C possesses unsatisfactory reliability to estimate alcohol consumption during pregnancy when used as self-report questionnaire in an obstetric setting.
Pompilus, Farrah; Burgess, Somali; Hudgens, Stacie; Banderas, Benjamin; Daniels, Selena
Facial lines or wrinkles are among the most visible signs of aging, and minimally invasive cosmetic procedures are becoming increasingly popular. The aim of this study was to develop and validate the Facial Line Satisfaction Questionnaire (FLSQ) for use in adults with upper facial lines (UFL). A literature review, concept elicitation interviews (n = 33), and cognitive debriefing interviews (n = 23) of adults with UFL were conducted to develop the FLSQ. The FLSQ comprises Baseline and Follow-up versions and was field-tested with 150 subjects in a US observational study designed to assess its psychometric performance. Analyses included acceptability (item and scale distribution [i.e. missingness, floor, and ceiling effects]), reliability, and validity (including concurrent validity). In total, 69 concepts were elicited during patient interviews. Following cognitive debriefing interviews, the FLSQ-Baseline version included 11 items and the Follow-up version included 13 items. Response rates for the FLSQ were 100% and 73% at baseline and follow-up, respectively; no items had excessive missing data. Questionnaire scale scores were normally distributed. Most domain scores demonstrated good internal consistency reliability (Cronbach's α ≥ 0.70). Most items within their respective domains exhibited good convergent (item-scale correlations > 0.40) and discriminant (items had higher correlation with their hypothesized scales than other scales) validity. Concurrent validity correlation coefficients of the FLSQ domain scores with the associated concurrent measures were acceptable (range: r = 0.40-0.70). Six FLSQ items demonstrated reliability and validity as stand-alone items outside their domains. The FLSQ is a valid questionnaire for assessing treatment expectations, satisfaction, impact, and preference in adults with UFL. © 2015 The Authors. Journal of Cosmetic Dermatology Published by Wiley Periodicals, Inc.
Png, Kelly; Kwan, Yu Heng; Leung, Ying Ying; Phang, Jie Kie; Lau, Jia Qi; Lim, Ka Keat; Chew, Eng Hui; Low, Lian Leng; Tan, Chuen Seng; Thumboo, Julian; Fong, Warren; Østbye, Truls
This systematic review aimed to identify studies investigating measurement properties of patient reported outcome measures (PROMs) for spondyloarthritis (SpA), and to evaluate their methodological quality and level of evidence relating to the measurement properties of PROMs. This systematic review was guided by the preferred reporting items for systematic review and meta-analysis (PRISMA). Articles published before 30 June 2017 were retrieved from PubMed ® , Embase ® , and PsychINFO ® (Ovid). Methodological quality and level of evidence were evaluated according to recommendations from the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN). We identified 60 unique PROMs from 125 studies in 39 countries. Twenty-one PROMs were validated for two or more SpA subtypes. The literature examined hypothesis testing (82.4%) most frequently followed by reliability (60.0%). A percentage of 77.7% and 42.7% of studies that assessed PROMs for hypothesis testing and reliability, respectively had "fair" or better methodological quality. Among the PROMs identified, 41.7% were studied in ankylosing spondylitis (AS) only and 23.3% were studied in psoriatic arthritis (PsA) only. The more extensively assessed PROMs included the ankylosing spondylitis quality of life (ASQoL) and bath ankylosing spondylitis functional index (BASFI) for ankylosing spondylitis, and the psoriatic arthritis quality of life questionnaire (VITACORA-19) for psoriatic arthritis. This study identified 60 unique PROMs through a systematic review and synthesized evidence of the measurement properties of the PROMs. There is a lack of validation of PROMs for use across SpA subtypes. Future studies may consider validating PROMs for use across different SpA subtypes. Copyright © 2018 Elsevier Inc. All rights reserved.
Full Text Available Bente Thoft Jensen,1,2 Jørgen Bjerggaard Jensen,1,2 Sussie Laustsen,2,3 Annemette Krintel Petersen,2,4 Ingrid Søndergaard,2 Michael Borre1,2 1Department of Urology, 2Department of Clinical Medicine, Centre of Research in Rehabilitation, 3Department of Cardiothoracic and Vascular Surgery, 4Department of Physiotherapy and Occupational Therapy, Aarhus University Hospital, Aarhus, Denmark Purpose: Health related quality of life (HRQoL is an important outcome in cancer care, although it is not well reported in surgical uro-oncology. Radical cystectomy (RC with lymph-node dissection is the standard treatment of muscle-invasive bladder cancer and high-risk noninvasive bladder cancer. A wide range of impairments are reported postsurgery. The aims were to evaluate whether a standardized pre- and postoperative physical exercise program and enhanced mobilization can impact on HRQoL and inpatient satisfaction in RC, as defined by the European Organisation for Research and Treatment of Cancer (EORTC. Materials and methods: Patients were randomized to fast-track RC and intervention (nI=50 or fast-track standard treatment (ns=57. HRQoL and inpatient satisfaction was measured using valid questionnaires: EORTC Quality of Life Questionnaire Core 30 (QLQ-C30 combined with the disease-specific EORTC BLS24 (baseline, and EORTC BLM30 (follow-up, and IN-PATSAT32 inpatient-satisfaction survey at discharge. Efficacy was defined as the differences in HRQoL-scores between treatment groups at the 4-month follow-up. Results: The intervention group significantly improved HRQoL scores in dyspnea (P≤0.05, constipation (P<0.02, and abdominal flatulence (P≤0.05 compared to the standard group. In contrast, the standard group reported significantly reduced symptoms in sleeping pattern (P≤0.04 and clinically relevant differences in role function, body function, and fatigue. The intervention did not compromise inpatient satisfaction. Conclusion: We found no overall impact
Bouman, Mark-Bram; van der Sluis, Wouter B; van Woudenberg Hamstra, Leonora E; Buncamper, Marlon E; Kreukels, Baudewijntje P C; Meijerink, Wilhelmus J H J; Mullender, Margriet G
Puberty-suppressing hormonal treatment may result in penoscrotal hypoplasia in transgender women, making standard penile inversion vaginoplasty not feasible. For these patients, intestinal vaginoplasty is a surgical alternative, but knowledge on patient-reported postoperative outcomes and quality of life is lacking. To assess patient-reported functional and esthetic outcomes, quality of life, satisfaction, and sexual well-being after primary total laparoscopic intestinal vaginoplasty in transgender women. A survey study was performed on transgender women who underwent primary total laparoscopic intestinal vaginoplasty with at least 1 year of clinical follow-up. Thirty-one transgender women completed the questionnaires (median age at time of surgery = 19.1 years, range = 18.3-45.0) after a median clinical follow-up of 2.2 years (range = 0.8-7.5). Consenting women were asked to complete a combined questionnaire of the Subjective Happiness Scale, the Satisfaction With Life Scale, Cantril's Ladder of Life Scale, the Female Sexual Function Index, the Female Genital Self-Imaging Scale, the Amsterdam Hyperactive Pelvic Floor Scale-Women, and a questionnaire addressing postoperative satisfaction. Patient-reported functional and esthetic outcomes and postoperative quality of life. Patients graded their life satisfaction a median of 8.0 (range = 4.0-10.0) on Cantril's Ladder of Life Scale. Patients scored a mean total score of 27.7 ± 5.8 on the Satisfaction With Life Scale, which indicated high satisfaction with life, and a mean total score of 5.6 ± 1.4 on the Subjective Happiness Scale. Functionality was graded a median score of 8.0 of 10 (range = 1.0-10.0) and esthetics a score of 8.0 out of 10 (range = 3.0-10.0). The mean Female Sexual Function Index total score of sexually active transgender women was 26.0 ± 6.8. This group of relatively young transgender women reported satisfactory functional and esthetic results of the neovagina and a good quality of life
Ahn, K.I.; Han, S.J.; Han, S.H.; Yang, J.E.
Main objectives of the WGRisk CAPS on the probabilistic safety analysis for advanced reactors which was approved by the OECD/NEA CSNI in June 2008, are to 1) characterize the ability of current PSA (Probability Safety Assessment) technology to address key questions regarding the development and licensing of advanced reactor designs; 2) characterize the potential value of advanced PSA methods and tools; and 3) develop recommendations to CSNI for any needed developments. For this purpose, the two following sub-tasks have been set up: -) A survey of participating countries regarding the state of PSA technologies for advanced reactors and -) Organization of an international workshop for detailed follow-up discussions related to the topic. In order to meet the objectives of the CAPS (CSNI Activity Proposal Sheet), the questionnaires to elicit the respondents' viewpoints had been distributed to the WGRisk member countries during the period of 2009 to 2010, and answers from the 12 countries (13 organizations) have been collected until February 2010. This paper summarizes the current status of the answers to the questionnaires and the international status and insights into PSA technologies for advanced reactors. (authors)
Leadbitter, Kathy; Aldred, Catherine; McConachie, Helen; Le Couteur, Ann; Kapadia, Dharmi; Charman, Tony; Macdonald, Wendy; Salomone, Erica; Emsley, Richard; Green, Jonathan; Barrett, Barbara; Barron, Sam; Beggs, Karen; Blazey, Laura; Bourne, Katy; Byford, Sarah; Cole-Fletcher, Rachel; Collino, Julia; Colmer, Ruth; Cutress, Anna; Gammer, Isobel; Harrop, Clare; Houghton, Tori; Howlin, Pat; Hudry, Kristelle; Leach, Sue; Maxwell, Jessica; Parr, Jeremy; Pickles, Andrew; Randles, Sarah; Slonims, Vicky; Taylor, Carol; Temple, Kathryn; Tobin, Hannah; Vamvakas, George; White, Lydia
There is a lack of measures that reflect the intervention priorities of parents of children with autism spectrum disorder (ASD) and that assess the impact of interventions on family experience and quality of life. The Autism Family Experience Questionnaire (AFEQ) was developed through focus groups and online consultation with parents, and…
Galbraith P Diane
Full Text Available Abstract Background Although there have been substantial medical advances that improve the outcomes following cardiac ischemic events, gender differences in the treatment and course of recovery for patients with coronary artery disease (CAD continue to exist. There is a general paucity of data comparing the health related quality of life (HRQOL in men and women undergoing treatment for CAD. The purpose of this study was to compare HRQOL outcomes of men and women in Alberta, at one-year following initial catheterization, after adjustment for known demographic, co-morbid, and disease severity predictors of outcome. Method The HRQOL outcome data were collected by means of a self-reported questionnaire mailed to patients on or near the one-year anniversary of their initial cardiac catheterization. Using the Seattle Angina Questionnaire (SAQ, 5 dimensions of HRQOL were measured: exertional capacity, anginal stability, anginal frequency, quality of life and treatment satisfaction. Data from the APPROACH registry were used to risk-adjust the SAQ scale scores. Two analytical strategies were used including general least squares linear modeling, and proportional odds modeling sometimes referred to as the "ordinal logistic modeling". Results 3392 (78.1% patients responded to the follow-up survey. The adjusted proportional odds ratios for men relative to women (PORs > 1 = better indicated that men reported significantly better HRQOL on all 5 SAQ dimensions as compared to women. (PORs: Exertional Capacity 3.38 (2.75–4.15, Anginal Stability 1.23 (1.03–1.47, Anginal Frequency 1.70 (1.43–2.01, Treatment Satisfaction 1.27 (1.07–1.50, and QOL 1.74 (1.48–2.04. Conclusions Women with CAD consistently reported worse HRQOL at one year follow-up compared to men. These findings underline the fact that conclusions based on research performed on men with CAD may not be valid for women and that more gender-related research is needed. Future studies are needed to
Schepers, S. A.; Engelen, V. E.; Haverman, L.; Caron, H. N.; Hoogerbrugge, P. M.; Kaspers, G. J. L.; Egeler, R. M.; Grootenhuis, M. A.
Several studies in adults have shown patient reported outcomes (PROs) to be effective in enhancing patient-physician communication and discussion of Health Related Quality of Life outcomes. Although less studied, positive results have been demonstrated in children. A PRO-intervention needs to be
Sammallahti, P R; Holi, M J; Komulainen, E J; Aalberg, V A
Antonovsky's Sense of Coherence Scale (SOC) and Bond's Defense Style Questionnaire (DSQ) were compared in a sample of 334 community controls and 122 psychiatric outpatients. The major question was, whether the two coping inventories with different theoretical backgrounds-stress research vs. psycho-analysis-tap similar phenomena. The affinity of the two coping measures was evident: in multiple regression analysis defenses explained 68% of the variance in sense of coherence. Not surprisingly, the SOC scale-emerging out of the salutogenic orientation-showed more expertise in measuring how people manage when they do well, whereas the DSQ-with its theoretical roots deep in psychopathology-was most sensitive to how people manage when they do rather poorly.
Lysdal, Susan H; Søsted, Heidi; Johansen, Jeanne D
Background. Occupational hand eczema is common in hairdressers, owing to wet work and chemicals. Objectives. To estimate whether hairdressers in Denmark have their hand eczema reported as an occupational disease and to clarify the reasons for not reporting. Methods. A register-based study...... was performed, comprising trained hairdressers (n = 7840), using a self-administered postal questionnaire including questions on hand eczema and it being reported as an occupational disease. A response rate of 67.9% (n = 5324) was obtained. Results. Overall, 2186 respondents ever had hand eczema; 71.3% were......-reported as an occupational disease; the perception of hand eczema among hairdressers and the lack of reporting from doctors are the main reasons for this....
Juhl, Carsten Bogh; Lund, Hans; Guyatt, GH
Title A hierarchy of patient-reported outcome measures for meta-analysis of knee osteoarthritis trials: empirical evidence from a survey of high impact journals Objective To develop a prioritized list for extracting patient-reported outcomes (PROs) measuring pain and disability for meta-analyses ......Title A hierarchy of patient-reported outcome measures for meta-analysis of knee osteoarthritis trials: empirical evidence from a survey of high impact journals Objective To develop a prioritized list for extracting patient-reported outcomes (PROs) measuring pain and disability for meta...... composite disability scores. Conclusions As choosing the most favorable PROs from individual trials can overestimate the effect compared to a systematic approach, using a prioritized list as presented in this study is recommended to reduce reviewer's likelihood of biased selection of PROs in meta-analyses....
Full Text Available Mucormycoses are serious infections caused by filamentous fungi of the order Mucorales. They occur most often in immunocompromised patients. We report five cases of mucormycosis in patients hospitalized in the Infectious Diseases Department in Sousse – Tunisia between 2000 and 2013. They were 4 males and one female, mean age 60 years. Three patients were diabetic and one patient had acute leukemia. The locations of mucormycosis were rhinocerebral, rhino-orbital, auricular, pulmonary and cutaneous. The Mucorales isolated were Rhizopus arrhizus in 3 cases and Lichteimia in 2 cases. All patients were treated with amphotericin B and 2 patients had, in addition, surgical debridement. Two patients died and 2 kept peripheral facial paralysis.
Angulo, J C; Brenes, F J; Lizarraga, I; Rejas, J; Trillo, S; Ochayta, D; Arumi, D
To explore the impact of urgency urinary incontinence (UUI) on well-being in non-institutionalized patients with overactive bladder (OAB) in a community sample. A cross-sectional web-based study was conducted in the general population, including males and females, >18 years of age. Patients with probable OAB were identified using a validated algorithm together with a score ≥8 on the OAB-V8 scale. Presence of coping behavior was considered determinant for the clinical diagnosis of OAB. Individual well-being was determined through a battery of patient-reported outcomes (PRO) measurements including assessment of health-related quality of life (EQ-5D), sleep disturbances (MOS Sleep), and life satisfaction (LISAT-8). Patients were grouped according to the number of daily UUI episodes (UUI severity): 0 (dry OAB),1, 2-3, or ≥4. Multivariate analysis to evaluate factors independently affecting quality of life was undertaken. A total of 396 patients (52.5% women, mean age: 55.3 [11.1] years, OAB-V8 mean score: 14.5 [7.9]) out of 2035 subjects participating from the general population met the criteria for OAB: 203 (51.3%) with 0episodes, 119 (30.1%) with 1, 52 (13.1%) with 2 or 3, and 22 (5.6%) with ≥4 episodes. A statistically significant linear adjusted association was found between number of UUI episodes and PRO scores. Participants with more episodes had poorer health profiles and self-evaluated quality of life, worse life satisfaction, and more sleep disturbances and fewer hours of sleep per night. Number of incontinence episodes was independent factor to affect quality of life using both LISAT-8 and MOS questionnaires. Severity of UUI was significantly associated with poorer individual well-being in subjects with OAB in a community sample in Spain. Copyright © 2015 AEU. Publicado por Elsevier España, S.L.U. All rights reserved.
Vrouwe, Sebastian Q; Somogyi, Ron B; Snell, Laura; McMillan, Catherine; Vesprini, Danny; Lipa, Joan E
The purpose of this study was to evaluate the self-reported aesthetic outcome of breast conservation therapy in a generalized sample of patients, and to describe potential barriers to referral for partial breast reconstruction. Consecutive breast conservation therapy patients completing radiotherapy over a 1-year period at a regional cancer center were identified. Eligible patients were contacted by means of mail/e-mail and invited to participate. Participants completed the BREAST-Q breast conservation therapy module along with a questionnaire examining feelings about breast reconstruction. Multiple regression analysis was performed using the satisfaction with breasts scale as the dependent variable. Surveys were completed by 185 of 592 eligible participants (response rate, 31.3 percent; mean age, 61 years) an average of 38 months after lumpectomy. The mean score for the BREAST-Q satisfaction with breasts scale was 59 of 100. Younger age (p = 0.038), lumpectomy reexcision (p = 0.018), and lumpectomy at a nonacademic center (p = 0.026) were significantly associated with lower satisfaction. Bra size, months from lumpectomy, and tumor quadrant/size were not significantly associated with satisfaction (p > 0.05). The most common statements regarding reconstruction were "I don't feel the need for it" (60.0 percent), "I don't like the thought of having breast implants" (22.7 percent), and "I don't want any more surgeon/doctor visits" (22.2 percent). Before lumpectomy, only 1.6 percent had a consultation for reconstruction, and only 22.7 percent were aware of this option. If offered, 33.1 percent of patients would have attended this consultation. There is an unmet demand for partial breast reconstruction, with an opportunity to advocate and increase awareness on behalf of patients undergoing breast conservation therapy.
Luna, I E; Kehlet, H; Peterson, B
AIMS: The purpose of this study was to assess early physical function after total hip or knee arthroplasty (THA/TKA), and the correlation between patient-reported outcome measures, physical performance and actual physical activity (measured by actigraphy). PATIENTS AND METHODS: A total of 80...... patients aged 55 to 80 years undergoing THA or TKA for osteoarthritis were included in this prospective cohort study. The main outcome measure was change in patient reported hip or knee injury and osteoarthritis outcome score (HOOS/KOOS) from pre-operatively until post-operative day 13 (THA) or 20 (TKA...
Bhatia Kailash P
Full Text Available Abstract Background The United States Food and Drug Administration (FDA are currently producing guidelines for the scientific adequacy of patient reported outcome measures (PROMs in clinical trials, which will have implications for the selection of scales used in future clinical trials. In this study, we examine how the Cervical Dystonia Impact Profile (CDIP-58, a rigorous Rasch measurement developed neurologic PROM, stands up to traditional psychometric criteria for three reasons: 1 provide traditional psychometric evidence for the CDIP-58 in line with proposed FDA guidelines; 2 enable researchers and clinicians to compare it with existing dystonia PROMs; and 3 help researchers and clinicians bridge the knowledge gap between old and new methods of reliability and validity testing. Methods We evaluated traditional psychometric properties of data quality, scaling assumptions, targeting, reliability and validity in a group of 391 people with CD. The main outcome measures used were the CDIP-58, Medical Outcome Study Short Form-36, the 28-item General Health Questionnaire, and Hospital and Anxiety and Depression Scale. Results A total of 391 people returned completed questionnaires (corrected response rate 87%. Analyses showed: 1 data quality was high (low missing data ≤ 4%, subscale scores could be computed for > 96% of the sample; 2 item groupings passed tests for scaling assumptions; 3 good targeting (except for the Sleep subscale, ceiling effect = 27%; 4 good reliability (Cronbach's alpha ≥ 0.92, test-retest intraclass correlations ≥ 0.83; and 5 validity was supported. Conclusion This study has shown that new psychometric methods can produce a PROM that stands up to traditional criteria and supports the clinical advantages of Rasch analysis.
Change of Patient-Reported Aesthetic Outcome Over Time and Identification of Factors Characterizing Poor Aesthetic Outcome After Breast-Conserving Therapy: Long-Term Results of a Prospective Cohort Study.
Hennigs, André; Biehl, Hannah; Rauch, Geraldine; Golatta, Michael; Tabatabai, Patrik; Domschke, Christoph; Schott, Sarah; Wallwiener, Markus; Schütz, Florian; Sohn, Christof; Heil, Jörg
We analyzed the change of aesthetic outcome (AO) over time and explored factors characterizing poor AO after breast-conserving surgery (BCS). This prospective single-center cohort study included 849 patients preoperatively planned for BCS between September 2007 and December 2011. Long-term follow-up was made once in 2013. AO was measured by the Aesthetic Status (AS) of the Breast Cancer Treatment Outcome Scale questionnaire. Clinical, surgical, and pathologic variables were evaluated to identify predictors of poor AO. We applied single factor variance analyses and univariable logistic regression analyses for outcome analysis. The long-term follow-up rate in 2013 was 73 % (621 nonrecurrent with final BCS). A poor or fair AO was reported in 30 (4.8 %) and 98 (15.8 %) of these 621 patients, respectively. Single factor variance analysis showed a negative impact of higher specimen weight on AO (p procedures.
Matteson, Kristen A
Patient-reported outcome measures (PROMs) have the potential to be extremely valuable in the clinical care delivery for women who report heavy menstrual bleeding (HMB). Increasingly, studies on HMB have incorporated PROMs to evaluate the impact of bleeding on quality of life. These measures have included semiquantitative charts and pictograms, questionnaires to assess symptoms and impact on quality of life, and health-related quality of life questionnaires. Recent systematic reviews have highlighted inconsistency of outcome measurement across studies on HMB as a challenge limiting the interpretability of the body of literature and the ability to generate consensus on the relative effectiveness of treatment options. Consequently, research initiatives and international collaborations are working to harmonize outcome measurement. Harmonizing the use of questionnaires in research and clinical care has the potential to improve patient-centered care delivery for women with HMB and improve the generation of patient-focused evidence-based guidelines for the evaluation and treatment of HMB. Copyright © 2016. Published by Elsevier Ltd.
Rayhill, Melissa L; Sharon, Roni; Burch, Rebecca; Loder, Elizabeth
To evaluate randomized controlled trial (RCT) registration and outcome reporting compliance in core headache medicine journals. We identified RCTs published in core journals (Headache, Cephalalgia, and the Journal of Headache and Pain) from 2005 through 2014. We searched articles for trial registration numbers, which were verified in the corresponding trial registry. We categorized trial funding sources as industry, academic, government, or mixed. We contacted corresponding authors to assess reasons for nonregistration. We evaluated whether primary outcomes in trial registries matched those in corresponding publications. The journals published 225 RCTs over the study period. Fifty-eight of 225 (26%) reported a trial registration number in the article that could be linked to a corresponding registry entry. Trial registration rates increased over the 9 years of the study. Forty-six of 118 (39%) of industry-funded studies were registered compared with 27% of academic and 0% of government-funded studies. Only 5% of RCTs were prospectively registered, reported primary outcomes identical to those in the trial registry, and did not report unacknowledged post hoc outcomes. The most common reason for nonregistration was lack of awareness. Only about a quarter of the articles published in the core headache medicine journals are compliant with trial registration, but compliance has increased over time. Selective reporting of outcomes remains a problem, and very few trials met all 3 reporting standards assessed in this study. Efforts to improve the quality of trial reporting in the headache literature should continue. © 2015 American Academy of Neurology.
Roessler, K K; Andersen, Tonny Elmose; Lohmander, S
predicted by the motives for sports participation. Baseline motives achievement and fun and well-being predicted worse levels of pain and function 2 years after the injury, even after adjusting for age, gender, treatment and baseline scores. Psychological aspects, such as motives for participation in sport......Aim of the study was to access how individual's motives for participation in sports impact on self-reported outcomes 2 years after an anterior cruciate ligament injury. Based on a longitudinal cohort study, this secondary analysis present data from the Knee Anterior Cruciate Ligament, Nonsurgical...... versus Surgical Treatment (KANON) study, a randomized controlled trial. At baseline, 121 patients recorded in an initial questionnaire that their motives for sports participation fell into four categories: achievement, health, social integration, or fun and well-being. These four categories were used...
Gniadecki, R; Robertson, David; Molta, C T
the impact of skin disease on QoL; the Health Assessment Questionnaire-Disability Index (HAQ-DI), an assessment of physical function; the Hospital Anxiety and Depression Scale (HADS), which screens for anxiety and depression symptoms; and individual questions on general health, disease activity, fatigue......Background Moderate/severe psoriasis combined with psoriatic arthritis (PsA) impairs health-related quality of life (QoL). Etanercept, a fully human tumour necrosis factor-a receptor fusion protein, is approved for treatment of both diseases. Objective To compare patient-reported health outcomes...... additional weeks. PROs included: the EuroQOL-5D (EQ-5D), which measures general health status and consists of the utility index measuring five dimensions of health, and a visual analogue scale (VAS) allowing patients to assess health status; the Dermatology Life Quality Index (DLQI), which measures...
Skypala, I J; Bull, S; Deegan, K; Gruffydd-Jones, K; Holmes, S; Small, I; Emery, P W; Durham, S R
Pollen-food syndrome (PFS), a food allergy affecting pollen-sensitized individuals, is likely to be the most prevalent food allergy in adults, estimated to affect 50-90% of people allergic to birch tree pollen. A validated PFS diagnostic questionnaire (PFSDQ2) was used to determine the prevalence of PFS and also to characterize those who report reactions to foods. Five UK General practices each sent the PFSDQ2 by post to 2000 patients aged 18-75 years randomly selected from their practice database. The validated questionnaire was accompanied by an additional set of questions to ascertain the demographic of the population, the foods involved and the age of onset. There were 3590 subjects who returned completed questionnaires, with an average return rate from each practice of 36% (range 22-47%). Of these, 73 were diagnosed with PFS according to the questionnaire (PFS+ve) giving a population prevalence of 2%. A further 482 subjects reported reactions to foods but did not fulfil the diagnostic criteria for PFS. The greatest prevalence of PFS was in the Croydon (SE England) urban practice (4.1%) and the lowest in the Aberdeen (Scotland) urban practice (0.8%) (P < 0.001).The most frequently reported trigger foods were apples, hazelnuts and kiwifruit and the majority of those with PFS first experienced symptoms below the age of 20 years. PFS+ve subjects were also more likely to be female and have a higher socio-economic status than those who did not report reactions to foods. The UK prevalence of PFS was 2%, although this varied according to the location of the practice population. The majority of PFS+ve subjects first reported symptoms in their teens. The reported age of onset has important implications for the diagnosis of primary and cross-reactive peanut and tree nut allergies in teenagers and young adults. The continuing rise in aeroallergen sensitization is likely to result in an increased frequency of PFS presenting in both primary and secondary care. © 2013
Copas, John; Dwan, Kerry; Kirkham, Jamie; Williamson, Paula
It is often suspected (or known) that outcomes published in medical trials are selectively reported. A systematic review for a particular outcome of interest can only include studies where that outcome was reported and so may omit, for example, a study that has considered several outcome measures but only reports those giving significant results. Using the methodology of the Outcome Reporting Bias (ORB) in Trials study of (Kirkham and others, 2010. The impact of outcome reporting bias in randomised controlled trials on a cohort of systematic reviews. British Medical Journal 340, c365), we suggest a likelihood-based model for estimating the effect of ORB on confidence intervals and p-values in meta-analysis. Correcting for bias has the effect of moving estimated treatment effects toward the null and hence more cautious assessments of significance. The bias can be very substantial, sometimes sufficient to completely overturn previous claims of significance. We re-analyze two contrasting examples, and derive a simple fixed effects approximation that can be used to give an initial estimate of the effect of ORB in practice.
Lavie Alon, Nirit; Tal, Tali
In this study, we used the classification and regression trees (CART) method to draw relationships between student self-reported learning outcomes in 26 field trips to natural environments and various characteristics of the field trip that include variables associated with preparation and pedagogy. We wished to examine the extent to which the preparation for the field trip, its connection to the school curriculum, and the pedagogies used, affect students' self-reported outcomes in three domains: cognitive, affective, and behavioral; and the extent the students' socioeconomic group and the guide's affiliation affect students' reported learning outcomes. Given that most of the field trips were guide-centered, the most important variable that affected the three domains of outcomes was the guide's storytelling. Other variables that showed relationships with self-reported outcomes were physical activity and making connections to everyday life-all of which we defined as pedagogical variables. We found no significant differences in student self-reported outcomes with respect to their socioeconomic group and the guide's organizational affiliation.
S. Nicole Culos-Reed
Full Text Available Limited research suggests yoga may be a viable gentle physical activity option with a variety of health-related quality of life, psychosocial and symptom management benefits. The purpose of this review was to determine the clinical significance of patient-reported outcomes from yoga interventions conducted with cancer survivors. A total of 25 published yoga intervention studies for cancer survivors from 2004–2011 had patient-reported outcomes, including quality of life, psychosocial or symptom measures. Thirteen of these studies met the necessary criteria to assess clinical significance. Clinical significance for each of the outcomes of interest was examined based on 1 standard error of the measurement, 0.5 standard deviation, and relative comparative effect sizes and their respective confidence intervals. This review describes in detail these patient-reported outcomes, how they were obtained, their relative clinical significance and implications for both clinical and research settings. Overall, clinically significant changes in patient-reported outcomes suggest that yoga interventions hold promise for improving cancer survivors' well-being. This research overview provides new directions for examining how clinical significance can provide a unique context for describing changes in patient-reported outcomes from yoga interventions. Researchers are encouraged to employ indices of clinical significance in the interpretation and discussion of results from yoga studies.
Makhni, Eric C; Padaki, Ajay S; Petridis, Petros D; Steinhaus, Michael E; Ahmad, Christopher S; Cole, Brian J; Bach, Bernard R
ACL (anterior cruciate ligament) reconstruction is one of the most commonly performed and studied procedures in modern sports medicine. A multitude of objective and subjective patient outcome measures exists; however, nonstandardized reporting patterns of these metrics may create challenges in objectively analyzing pooled results from different studies. The goal of this study was to document the variability in outcome reporting patterns in high-impact orthopaedic studies of ACL reconstruction. All clinical studies pertaining to ACL reconstruction in four high-impact-factor orthopaedic journals over a five-year period were reviewed. Biomechanical, basic science, and imaging studies were excluded, as were studies with fewer than fifty patients, yielding 119 studies for review. Incorporation of various objective and subjective outcomes was noted for each study. Substantial variability in reporting of both objective and subjective measures was noted in the study cohort. Although a majority of studies reported instrumented laxity findings, there was substantial variability in the type and method of laxity reporting. Most other objective outcomes, including range of motion, strength, and complications, were reported in <50% of all studies. Return to pre-injury level of activity was infrequently reported (24% of studies), as were patient satisfaction and pain assessment following surgery (8% and 13%, respectively). Of the patient-reported outcomes, the International Knee Documentation Committee (IKDC), Lysholm, and Tegner scores were most often reported (71%, 63%, and 42%, respectively). Substantial variability in outcome reporting patterns exists among high-impact studies of ACL reconstruction. Such variability may create challenges in interpreting results and pooling them across different studies. Copyright © 2015 by The Journal of Bone and Joint Surgery, Incorporated.
Gagné, Myriam; Boulet, Louis-Philippe; Pérez, Norma; Moisan, Jocelyne
To systematically identify the measurement properties of patient-reported outcome instruments (PROs) that evaluate adherence to inhaled maintenance medication in adults with asthma. We conducted a systematic review of six databases. Two reviewers independently included studies on the measurement properties of PROs that evaluated adherence in asthmatic participants aged ≥18 years. Based on the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN), the reviewers (1) extracted data on internal consistency, reliability, measurement error, content validity, structural validity, hypotheses testing, cross-cultural validity, criterion validity, and responsiveness; (2) assessed the methodological quality of the included studies; (3) assessed the quality of the measurement properties (positive or negative); and (4) summarised the level of evidence (limited, moderate, or strong). We screened 6,068 records and included 15 studies (14 PROs). No studies evaluated measurement error or responsiveness. Based on methodological and measurement property quality assessments, we found limited positive evidence of: (a) internal consistency of the Adherence Questionnaire, Refined Medication Adherence Reason Scale (MAR-Scale), Medication Adherence Report Scale for Asthma (MARS-A), and Test of the Adherence to Inhalers (TAI); (b) reliability of the TAI; and (c) structural validity of the Adherence Questionnaire, MAR-Scale, MARS-A, and TAI. We also found limited negative evidence of: (d) hypotheses testing of Adherence Questionnaire; (e) reliability of the MARS-A; and (f) criterion validity of the MARS-A and TAI. Our results highlighted the need to conduct further high-quality studies that will positively evaluate the reliability, validity, and responsiveness of the available PROs. This article is protected by copyright. All rights reserved.
Knowles, Rachel Louise; Tadic, Valerija; Hogan, Ailbhe; Bull, Catherine; Rahi, Jugnoo Sangeeta; Dezateux, Carol
Understanding children's views about living with congenital heart defects (CHDs) is fundamental to supporting their successful participation in daily life, school and peer relationships. As an adjunct to a health and quality of life outcomes questionnaire, we asked school-age children who survived infant heart procedures to describe their experiences of living with CHDs. In a UK-wide cohort study, children aged 10 to 14 years with CHDs self-completed postal questionnaires that included an open question about having a 'heart problem'. We compared the characteristics of children with more and less severe cardiac diagnoses and, through collaborative inductive content analysis, investigated the subjective experiences and coping strategies described by children in both clinical severity groups. Text and/or drawings were returned by 436 children (246 boys [56%], mean age 12.1 years [SD 1.0; range 10-14]); 313 had less severe (LS) and 123 more severe (MS) cardiac diagnoses. At the most recent hospital visit, a higher proportion of the MS group were underweight (more than two standard deviations below the mean for age) or cyanosed (underweight: MS 20.0%, LS 9.9%; cyanosed: MS 26.2%, LS 3.5%). Children in the MS group described concerns about social isolation and feeling 'different', whereas children with less severe diagnoses often characterised their CHD as 'not a big thing'. Some coping strategies were common to both severity groups, including managing health information to avoid social exclusion, however only children in the LS group considered their CHD 'in the past' or experienced a sense of survivorship. Children's reported experiences were not dependent on their cardiac diagnosis, although there were clear qualitative differences by clinical severity group. Children's concerns emphasised social participation and our findings imply a need to shift the clinical focus from monitoring cardiac function to optimising participation. We highlight the potential for informing
Papachristos, Alexander; Edwards, Elton; Dowrick, Adam; Gosling, Cameron
Despite a number of injury prevention campaigns and interventions, horse riding continues to be a dangerous activity, resulting in more accidents per hour than motorcycling, skiing and football. Injuries are often serious, with one in four patients requiring admission to hospital. This study aims to describe the severity of equestrian-related injuries (ERIs) using both clinical parameters and patient-reported outcomes. A retrospective study of all patients aged ≥18 years admitted to The Alfred Hospital between January 2003 and January 2008 with an ERI was performed. Specific clinical data were extracted from the medical record. In addition, a questionnaire was conducted identifying the details of the accident, the required recovery time and levels of ongoing pain and physical disability. During the study period 172 patients met the inclusion criteria. There were three deaths (2%). Eighty-two patients (48%) suffered head injuries. Forty-one patients (24%) were admitted to the ICU and 31 patients (18%) required mechanical ventilation. On discharge, 41 patients (24%) required transfer to a sub-acute rehabilitation facility. One-hundred-and-twenty-four patients (72%) completed the questionnaire. Thirty-nine respondents (31%) were not wearing a helmet. Among patients injured for more than 6 months, 38 (35%) still experienced moderate or severe pain or disability. Ninety-five patients had returned to work at the time of review, among which 47(50%) required longer than 6 months to recover, and 40 (42%) returned at a reduced capacity. The clinical and patient-reported outcomes of ERIs requiring hospital admission are poor. Persistent pain and disability are common, even up to 5 years post-injury. A large proportion of patients required longer than 6 months to return to work and many return at a reduced capacity. Copyright © 2014 Elsevier Ltd. All rights reserved.
Benitez Baena, Isabel; Padilla Garcia, Jose Luis; Ongena, Yfke
Household surveys often require including proxy reporters to obtain information about other household members who cannot be interviewed. The participation of proxies can undermine survey data quality due to the fact that proxies must respond to questions thinking about other people. The objectives
Saraiva, Daniela; de Camargo, Beatriz; Davis, Aileen M
Evaluation of physical functioning is an important tool for planning rehabilitation. Instruments need to be culturally adapted for use in non-English speaking countries. The aim of this study was to culturally adapt, including translation and preliminary validation, the Toronto extremity salvage score (TESS) for Brazil, in a sample of adolescents and young adults treated for lower extremity osteosarcoma. The process included two independent forward translations of TESS questionnaire, consensus between translators on a forward translation, back-translation by two independent translators, and a review of the back-translations. Internal consistency of the TESS and known groups validity were also evaluated. Internal consistency for the 30 item TESS was high (coefficient alpha = 0.87). TESS score ranges from 0 to 100. Forty-eight patients completed the questionnaire and scores ranged from 56 to 100 (mean score: 89.6). Patients receiving no pain medications scored higher on the TESS than those who were receiving pain medication (P = 0.014), and patients using walking aids had slightly higher but not statistically different scores. Those who were treated with amputation had higher scores than those who were treated with limb salvage procedures (P = 0.003). Preliminary evidence suggests that Brazilian-Portuguese translation is acceptable, understandable, reliable, and valid for evaluating the function in adolescents and young adults with osteosarcoma in lower extremity in Brazil. (c) 2008 Wiley-Liss, Inc.
Koenraads, S P C; Aarts, M C J; van der Veen, E L; Grolman, W; Stegeman, I
The importance of quality of life (QOL) as an endpoint and the use of validated QOL questionnaires have increased over time. To evaluate health-related quality of life (HR-QOL) measurement instruments used in patients in otorhinolaryngology (ORL). We aimed to establish the use of QOL questionnaires in ORL over a period of time, establish the use of QOL questionnaires within different domains and determine the use of validated QOL questionnaires. We performed a comprehensive search in PubMed up to 1 January 2014. Articles were included that measured HR-QOL questionnaires in clinical practice in children, adolescents or adults in 42 journals of ORL. Multiple unique QOL questionnaires, organised according to domain, time and survey of validation, were extracted from reported articles. Of 2442 articles, we utilised 1196 publications with a total of 2103 QOL questionnaires regarding ORL. We evaluated a variety of 363 unique QOL questionnaires in which 60% (n = 220) QOL questionnaires had been validated. We found a continuing increase in the amount of articles which used QOL questionnaires since the beginning of the 20th century, while the percentage of validated QOL questionnaires remained the same (76%). Most QOL questionnaires were used in the domains oncology (35%), otology (21%) and rhinology (20%). The domain otology had the largest amount of unique QOL questionnaires (n = 122). We identified and evaluated all unique HR-QOL questionnaires utilised in patients in ORL. Recently, the use of validated and non-validated HR-QOL questionnaires has increased within all domains of ORL. The assessment of QOL has become an important outcome measure in clinical practice, in medical research and for healthcare organisations. © 2015 John Wiley & Sons Ltd.
Tuken, Murat; Kiremit, Murat Can; Serefoglu, Ege Can
To evaluate the effects of modafinil on the intravaginal ejaculatory latency time (IELT) and patient-reported outcomes in patients with lifelong premature ejaculation (PE). Treatment-naïve lifelong PE patients were included in this proof-of-concept study. Self-estimated IELTs of the patients were recorded and the Premature Ejaculation Profile (PEP) questionnaire was administered before the initiation of on-demand modafinil 100 mg treatment. At the end of 1 month of treatment, self-estimated IELTs were recorded again, along with posttreatment PEP outcomes. Overall, 55 lifelong PE patients with a mean age of 35.07 ± 7.80 (range: 22-58) years were enrolled. Modafinil treatment modestly increased the mean IELT at the end of 1 month (24.82 ± 16.10 seconds vs 49.82 ± 31.46 seconds, P = .0001). Moreover, at the end of 1 month, patients reported in the PEP questionnaire better control over ejaculation (0.75 ± 0.67 vs 1.35 ± 0.91, P = .0001), improved satisfaction with sexual intercourse (0.98 ± 0.78 vs 1.40 ± 0.85, P = .0001), lesser personal distress (0.42 ± 0.69 vs 0.89 ± 1.01, P = .0001), and reduced interpersonal difficulty (1.69 ± 1.48 vs 1.95 ± 1.47, P = .0001). In an uncontrolled proof-of-concept study of men with treatment-naïve lifelong PE where IELT was self-reported without a stopwatch, modest improvements of both IELT and patient-reported outcome measures were observed. Future controlled clinical trials are necessary to confirm these findings. Copyright © 2016 Elsevier Inc. All rights reserved.
Have, Mads; Overgaard, Søren; Jensen, Carsten
Background: Preoperative patient characteristics may influence patient choice for participating in RCT’s. Purpose / Aim of Study: This study aimed to compare patient characteristics, level of pain, physical function and joint space width in patients with severe hip osteoarthritis (OA) who accepted...... or refused to participate in a RCT. Materials and Methods: In this prospective cohort study a total of 137 patients with primary hip OA were asked to choose between surgical or non- surgical treatment. We then compared the characteristics of each patient cohort (demographics, pain level and duration......, analgesic use, exercise habits), the radiographic hip OA state and their responses to Hip dysfunction and Osteoarthritis Outcome Score (HOOS, 0-100) and European Quality of Life Scale (EQ-5D-5L) questionnaires. Findings / Results: The between-group HOOS scores were significantly different in three out...
Dacakis, Georgia; Oates, Jennifer; Douglas, Jacinta
The Transsexual Voice Questionnaire (TVQ MtF ) was designed to capture the voice-related perceptions of individuals whose gender identity as female is the opposite of their birth-assigned gender (MtF women). Evaluation of the psychometric properties of the TVQ MtF is ongoing. To investigate associations between TVQ MtF scores and (1) self-perceptions of voice femininity and (2) acoustic parameters of voice pitch and voice quality in order to evaluate further the validity of the TVQ MtF . A strong correlation between TVQ MtF scores and self-ratings of voice femininity was predicted, but no association between TVQ MtF scores and acoustic measures of voice pitch and quality was proposed. Participants were 148 MtF women (mean age 48.14 years) recruited from the La Trobe Communication Clinic and the clinics of three doctors specializing in transgender health. All participants completed the TVQ MtF and 34 of these participants also provided a voice sample for acoustic analysis. Pearson product-moment correlation analysis was conducted to examine the associations between TVQ MtF scores and (1) self-perceptions of voice femininity and (2) acoustic measures of F0, jitter (%), shimmer (dB) and harmonic-to-noise ratio (HNR). Strong negative correlations between the participants' perceptions of their voice femininity and the TVQ MtF scores demonstrated that for this group of MtF women a low self-rating of voice femininity was associated with more frequent negative voice-related experiences. This association was strongest with the vocal-functioning component of the TVQ MtF . These strong correlations and high levels of shared variance between the TVQ MtF and a measure of a related construct provides evidence for the convergent validity of the TVQ MtF . The absence of significant correlations between the TVQ MtF and the acoustic data is consistent with the equivocal findings of earlier research. This finding indicates that these two measures assess different aspects of the voice
Begum, Rasheda; Kolstoe, Simon
Publication and outcome reporting bias is often caused by researchers selectively choosing which scientific results and outcomes to publish. This behaviour is ethically significant as it distorts the literature used for future scientific or clinical decision-making. This study investigates the practicalities of using ethics applications submitted to a UK National Health Service (NHS) research ethics committee to monitor both types of reporting bias. As part of an internal audit we accessed research ethics database records for studies submitting an end of study declaration to the Hampshire A research ethics committee (formerly Southampton A) between 1st January 2010 and 31st December 2011. A literature search was used to establish the publication status of studies. Primary and secondary outcomes stated in application forms were compared with outcomes reported in publications. Out of 116 studies the literature search identified 57 publications for 37 studies giving a publication rate of 32%. Original Research Ethics Committee (REC) applications could be obtained for 28 of the published studies. Outcome inconsistencies were found in 16 (57%) of the published studies. This study showed that the problem of publication and outcome reporting bias is still significant in the UK. The method described here demonstrates that UK NHS research ethics committees are in a good position to detect such bias due to their unique access to original research protocols. Data gathered in this way could be used by the Health Research Authority to encourage higher levels of transparency in UK research.
Bruun, Signe; Buhl, Susanne; Husby, Steffen; Jacobsen, Lotte Neergaard; Michaelsen, Kim F; Sørensen, Jan; Zachariassen, Gitte
Studies on prevalence and effects of breastfeeding call for reliable and precise data collection to optimize infant nutrition, growth, and health. Data on breastfeeding and infant nutrition are at risk of, for example, recall bias or social desirability bias. The aim of the present analysis was to compare data on infant nutrition, that is, breastfeeding, use of infant formula, and introduction to complementary foods, obtained by four different methods. We assumed that weekly short message service (SMS) questions were the most reliable method, to which the other methods were compared. The study population was part of the Odense Child Cohort. The four methods used were: (a) self-administered questionnaire 3 months postpartum, (b) self-administered questionnaire 18 months postpartum, (c) registrations from health visitors visiting the families several times within the first year of life, and (d) weekly SMS questions introduced shortly after birth. In total, 639 singleton mothers with data from all four methods were included. The proportion of mothers initiating breastfeeding varied from 86% to 97%, the mean duration of exclusive breastfeeding from 12 to 19 weeks, and the mean age when introduced to complementary foods from 19 to 21 weeks. The mean duration of any breastfeeding was 33 weeks across methods. Compared with the weekly SMS questions, the self-administered questionnaires and the health visitors' reports resulted in a greater proportion of mothers with an unknown breastfeeding status, a longer duration of exclusive breastfeeding and later introduction to complementary foods, while the duration of any breastfeeding did not differ.
Jones, Philip M; Chow, Jeffrey T Y; Arango, Miguel F; Fridfinnson, Jason A; Gai, Nan; Lam, Kevin; Turkstra, Timothy P
Randomized clinical trials (RCTs) provide high-quality evidence for clinical decision-making. Trial registration is one of the many tools used to improve the reporting of RCTs by reducing publication bias and selective outcome reporting bias. The purpose of our study is to examine whether RCTs published in the top 6 general anesthesiology journals were adequately registered and whether the reported primary and secondary outcomes corresponded to the originally registered outcomes. Following a prespecified protocol, an electronic database was used to systematically screen and extract data from RCTs published in the top 6 general anesthesiology journals by impact factor (Anaesthesia, Anesthesia & Analgesia, Anesthesiology, British Journal of Anaesthesia, Canadian Journal of Anesthesia, and European Journal of Anaesthesiology) during the years 2007, 2010, 2013, and 2015. A manual search of each journal's Table of Contents was performed (in duplicate) to identify eligible RCTs. An adequately registered trial was defined as being registered in a publicly available trials registry before the first patient being enrolled with an unambiguously defined primary outcome. For adequately registered trials, the outcomes registered in the trial registry were compared with the outcomes reported in the article, with outcome discrepancies documented and analyzed by the type of discrepancy. During the 4 years studied, there were 860 RCTs identified, with 102 RCTs determined to be adequately registered (12%). The proportion of adequately registered trials increased over time, with 38% of RCTs being adequately registered in 2015. The most common reason in 2015 for inadequate registration was registering the RCT after the first patient had already been enrolled. Among adequately registered trials, 92% had at least 1 primary or secondary outcome discrepancy. In 2015, 42% of RCTs had at least 1 primary outcome discrepancy, while 90% of RCTs had at least 1 secondary outcome discrepancy
Deighton, Jessica; Croudace, Tim; Fonagy, Peter; Brown, Jeb; Patalay, Praveetha; Wolpert, Miranda
There is a growing appetite for mental health and wellbeing outcome measures that can inform clinical practice at individual and service levels, including use for local and national benchmarking. Despite a varied literature on child mental health and wellbeing outcome measures that focus on psychometric properties alone, no reviews exist that appraise the availability of psychometric evidence and suitability for use in routine practice in child and adolescent mental health services (CAMHS) including key implementation issues. This paper aimed to present the findings of the first review that evaluates existing broadband measures of mental health and wellbeing outcomes in terms of these criteria. The following steps were implemented in order to select measures suitable for use in routine practice: literature database searches, consultation with stakeholders, application of inclusion and exclusion criteria, secondary searches and filtering. Subsequently, detailed reviews of the retained measures' psychometric properties and implementation features were carried out. 11 measures were identified as having potential for use in routine practice and meeting most of the key criteria: 1) Achenbach System of Empirically Based Assessment, 2) Beck Youth Inventories, 3) Behavior Assessment System for Children, 4) Behavioral and Emotional Rating Scale, 5) Child Health Questionnaire, 6) Child Symptom Inventories, 7) Health of the National Outcome Scale for Children and Adolescents, 8) Kidscreen, 9) Pediatric Symptom Checklist, 10) Strengths and Difficulties Questionnaire, 11) Youth Outcome Questionnaire. However, all existing measures identified had limitations as well as strengths. Furthermore, none had sufficient psychometric evidence available to demonstrate that they could reliably measure both severity and change over time in key groups. The review suggests a way of rigorously evaluating the growing number of broadband self-report mental health outcome measures against
Maxwell, Andrew; Holland, Edward; Cibik, Lisa; Fakadej, Anna; Foster, Gary; Grosinger, Les; Moyes, Andrew; Nielsen, Stephen; Silverstein, Steven; Toyos, Melissa; Weinstein, Arthur; Hartzell, Scott
To assess the effectiveness and safety of a multifocal intraocular lens (IOL) with +2.5 diopter (D) additional power compared with a monofocal IOL. Fifteen sites in the United States. Prospective randomized patient- and observer-masked clinical trial. Randomized patients received multifocal or monofocal IOLs bilaterally. Visual acuity (33 cm, 40 cm, 53 cm, 60 cm, 4 m) was measured; safety was assessed through adverse event rates. Patient-reported visual outcomes were evaluated using the Visual Tasks questionnaire. The frequency and severity of visual disturbances were evaluated using the Assessment of Photic Phenomena and Lens EffectS questionnaire. The multifocal IOL (n = 155) provided better corrected distance visual acuity at 53 cm than the monofocal IOL (n = 165) (0.322 versus 0.512 logMAR; between-group difference, -0.190 logMAR; P < .0001) and 40 cm but not at 4 m. Ocular adverse event rates were less than 3.84% in both groups. Serious adverse event rates were comparable between the 2 IOL types. Patients with multifocal IOLs reported less difficulty with near tasks (with and without correction) and intermediate tasks (without correction). Difficulty with extended-intermediate and distance tasks was similar between groups. The most frequently reported self-rated severe phenomena were halos, starbursts, and glare. Most patients (monofocal ≥72%; multifocal ≥73%) reported never experiencing blurred, distorted, or double vision. The +2.5 D multifocal IOL provided better vision at 40 cm and 53 cm and similar vision at 4 m compared with the monofocal IOL. Safety profiles and visual phenomena were comparable between groups. Copyright © 2017 ASCRS and ESCRS. Published by Elsevier Inc. All rights reserved.
Castillo Mayret M
Full Text Available Abstract Background Measures that reflect patients' assessment of their health are of increasing importance as outcome measures in randomised controlled trials. The methodological approach used in the pre-validation development of new instruments (item generation, item reduction and question formatting should be robust and transparent. The totality of the content of existing PRO instruments for a specific condition provides a valuable resource (pool of items that can be utilised to develop new instruments. Such 'top down' approaches are common, but the explicit pre-validation methods are often poorly reported. This paper presents a systematic and generalisable 5-step pre-validation PRO instrument methodology. Methods The method is illustrated using the example of the Aberdeen Glaucoma Questionnaire (AGQ. The five steps are: 1 Generation of a pool of items; 2 Item de-duplication (three phases; 3 Item reduction (two phases; 4 Assessment of the remaining items' content coverage against a pre-existing theoretical framework appropriate to the objectives of the instrument and the target population (e.g. ICF; and 5 qualitative exploration of the target populations' views of the new instrument and the items it contains. Results The AGQ 'item pool' contained 725 items. Three de-duplication phases resulted in reduction of 91, 225 and 48 items respectively. The item reduction phases discarded 70 items and 208 items respectively. The draft AGQ contained 83 items with good content coverage. The qualitative exploration ('think aloud' study resulted in removal of a further 15 items and refinement to the wording of others. The resultant draft AGQ contained 68 items. Conclusions This study presents a novel methodology for developing a PRO instrument, based on three sources: literature reporting what is important to patient; theoretically coherent framework; and patients' experience of completing the instrument. By systematically accounting for all items dropped
Robillard, Genevève; Bouchard, Stéphane; Dumoulin, Stéphane; Guitard, Tanya; Klinger, Evelyne
Empirical studies have consistently shown the effectiveness of a multicomponent CBT treatment of social anxiety disorder (SAD). Previous outcome studies on virtual reality and SAD have focused on people suffering from fear of public speaking and not full blown SAD. In this study, 45 adults receiving a DSM-IV-TR diagnostic of social anxiety were randomly assigned to traditional CBT treatment (with in vivo exposure), CBT-VR combined treatment, or a waiting list. Results show significant reduction of anxiety on all questionnaires as well as statistically significant interactions between both treatment groups and the waiting list.
Ezequiel García Elorrio
Full Text Available Resumen INTRODUCCIÓN La seguridad del paciente tiene por objetivo lograr una atención en salud libre de daño. La Organización Mundial de la Salud indica que este objetivo se logra a través de la comunicación, el análisis y la prevención de eventos adversos en los pacientes. La cultura organizacional ha sido identificada como uno de los principales factores para el éxito de las intervenciones para mejorar la seguridad del paciente. Un componente esencial de la cultura en seguridad es la actitud de los profesionales de la salud hacia el error médico. Las actitudes pueden mejorarse a través de una educación apropiada en las carreras biomédicas, pero la inclusión en los programas de Argentina es escasa. El cuestionario Actitudes para la Seguridad del Paciente mide conocimientos, creencias y actitudes sobre seguridad del paciente en estudiantes de medicina de una institución en Argentina y puede resultar una herramienta útil para ser utilizada en nuestro país. OBJETIVO Validar el cuestionario modificado de Actitudes para la Seguridad del Paciente III (APSQ III, por su sigla en inglés Attitudes to Patient Safety Questionnaire III, para la medición de conocimientos, creencias y actitudes de los estudiantes de medicina del Instituto Universitario Centro de Educación Médica e Investigaciones Clínicas. Describir el nivel de conocimientos, creencias y actitudes en seguridad del paciente de los estudiantes de medicina del referido instituto en los años 2012, 2015 y 2016. MÉTODOS Diseño: estudio descriptivo. Alcance: exploratorio. Ambiente: Instituto Universitario Centro de Educación Médica e Investigaciones Clínicas en Buenos Aires, Argentina. Población: estudiantes de medicina de cuarto y quinto año. Muestreo: se estimó un tamaño de la muestra de 100 participantes para poder obtener estimaciones significativas de acuerdo al α de Cronbach >0,6. RESULTADOS La fiabilidad (consistencia interna del instrumento, mediante α de
Dalkin, Sonia; Gibbons, Elizabeth; Wright, Judy; Valderas, Jose Maria; Meads, David; Black, Nick
Objectives Internationally, there has been considerable debate about the role of data in supporting quality improvement in health care. Our objective was to understand how, why and in what circumstances the feedback of aggregated patient-reported outcome measures data improved patient care. Methods We conducted a realist synthesis. We identified three main programme theories underlying the use of patient-reported outcome measures as a quality improvement strategy and expressed them as nine ‘if then’ propositions. We identified international evidence to test these propositions through searches of electronic databases and citation tracking, and supplemented our synthesis with evidence from similar forms of performance data. We synthesized this evidence through comparing the mechanisms and impact of patient-reported outcome measures and other performance data on quality improvement in different contexts. Results Three programme theories were identified: supporting patient choice, improving accountability and enabling providers to compare their performance with others. Relevant contextual factors were extent of public disclosure, use of financial incentives, perceived credibility of the data and the practicality of the results. Available evidence suggests that patients or their agents rarely use any published performance data when selecting a provider. The perceived motivation behind public reporting is an important determinant of how providers respond. When clinicians perceived that performance indicators were not credible but were incentivized to collect them, gaming or manipulation of data occurred. Outcome data do not provide information on the cause of poor care: providers needed to integrate and interpret patient-reported outcome measures and other outcome data in the context of other data. Lack of timeliness of performance data constrains their impact. Conclusions Although there is only limited research evidence to support some widely held theories of how
Full Text Available Abstract Background Patient-reported Outcomes (PROs capturing e.g., quality of life, fatigue, depression, medication side-effects or disease symptoms, have become important outcome parameters in medical research and daily clinical practice. Electronic PRO data capture (ePRO with software packages to administer questionnaires, storing data, and presenting results has facilitated PRO assessment in hospital settings. Compared to conventional paper-pencil versions of PRO instruments, ePRO is more economical with regard to staff resources and time, and allows immediate presentation of results to the medical staff. The objective of our project was to develop software (CHES – Computer-based Health Evaluation System for ePRO in hospital settings and at home with a special focus on the presentation of individual patient’s results. Methods Following the Extreme Programming development approach architecture was not fixed up-front, but was done in close, continuous collaboration with software end users (medical staff, researchers and patients to meet their specific demands. Developed features include sophisticated, longitudinal charts linking patients’ PRO data to clinical characteristics and to PRO scores from reference populations, a web-interface for questionnaire administration, and a tool for convenient creating and editing of questionnaires. Results By 2012 CHES has been implemented at various institutions in Austria, Germany, Switzerland, and the UK and about 5000 patients participated in ePRO (with around 15000 assessments in total. Data entry is done by the patients themselves via tablet PCs with a study nurse or an intern approaching patients and supervising questionnaire completion. Discussion During the last decade several software packages for ePRO have emerged for different purposes. Whereas commercial products are available primarily for ePRO in clinical trials, academic projects have focused on data collection and presentation in daily
Cesari, Matteo; Demougeot, Laurent; Boccalon, Henri; Guyonnet, Sophie; Abellan Van Kan, Gabor; Vellas, Bruno; Andrieu, Sandrine
The "frailty syndrome" (a geriatric multidimensional condition characterized by decreased reserve and diminished resistance to stressors) represents a promising target of preventive interventions against disability in elders. Available screening tools for the identification of frailty in the absence of disability present major limitations. In particular, they have to be administered by a trained assessor, require special equipment, and/or do not discriminate between frail and disabled individuals. Aim of this study is to verify the agreement of a novel self-reported questionnaire (the "Frail Non-Disabled" [FiND] instrument) designed for detecting non-mobility disabled frail older persons with results from reference tools. Data are from 45 community-dwelling individuals aged ≥60 years. Participants were asked to complete the FiND questionnaire separately exploring the frailty and disability domains. Then, a blinded assessor objectively measured the frailty status (using the phenotype proposed by Fried and colleagues) and mobility disability (using the 400-meter walk test). Cohen's kappa coefficients were calculated to determine the agreement between the FiND questionnaire with the reference instruments. Mean age of participants (women 62.2%) was 72.5 (standard deviation 8.2) years. Seven (15.6%) participants presented mobility disability as being unable to complete the 400-meter walk test. According to the frailty phenotype criteria, 25 (55.6%) participants were pre-frail or frail, and 13 (28.9%) were robust. Overall, a substantial agreement of the instrument with the reference tools (kappa = 0.748, quadratic weighted kappa = 0.836, both p valuesFiND disability domain and the 400-meter walk test was excellent (kappa = 0.920, pFiND questionnaire presents a very good capacity to correctly identify frail older persons without mobility disability living in the community. This screening tool may represent an opportunity for diffusing awareness about frailty
Full Text Available The reporting of evaluation outcomes can be a point of contention between evaluators and policy-makers when a given reform fails to fulfil its promises. Whereas evaluators are required to report outcomes in full, policy-makers have a vested interest in framing these outcomes in a positive light-especially when they previously expressed a commitment to the reform. The current evidence base is limited to a survey of policy evaluators, a study on reporting bias in education research and several studies investigating the influence of industry sponsorship on the reporting of clinical trials. The objective of this study was twofold. Firstly, it aimed to assess the risk of outcome reporting bias (ORB or 'spin' in pilot evaluation reports, using seven indicators developed by clinicians. Secondly, it sought to examine how the government's commitment to a given reform may affect the level of ORB found in the corresponding evaluation report. To answer these questions, 13 evaluation reports were content-analysed, all of which found a non-significant effect of the intervention on its stated primary outcome. These reports were systematically selected from a dataset of 233 pilot and experimental evaluations spanning three policy areas and 13 years of government-commissioned research in the UK. The results show that the risk of ORB is real. Indeed, all studies reviewed here resorted to at least one of the presentational strategies associated with a risk of spin. This study also found a small, negative association between the seniority of the reform's champion and the risk of ORB in the evaluation of that reform. The publication of protocols and the use of reporting guidelines are recommended.
Urinary schistosomiasis is endemic in some parts of Cross River State, in Nigeria. Due to the prohibitive cost of diagnosis and the focal nature of the disease, endemic areas cannot be easily delineated for control operations. In this study, we report the outcome of our assessment of the newly introduced questionnaire ...
Hafner, Brian J.; Morgan, Sara J.; Askew, Robert L.; Salem, Rana
Documentation of clinical outcomes is increasingly expected in delivery of prosthetic services and devices. However, many outcome measures suitable for use in clinical care and research have not been psychometrically tested with prosthesis users. The aim of this study was to determine test-retest reliability, mode-of-administration (MoA) equivalence, standard error of measurement (SEM), and minimal detectable change (MDC) of standardized, self-report instruments that assess constructs of impo...
Gutacker, Nils; Street, Andrew; Gomes, Manuel; Bojke, Chris
The best practice tariff for hip and knee replacement in the English National Health Service (NHS) rewards providers based on improvements in patient-reported outcome measures (PROMs) collected before and after surgery. Providers only receive a bonus if at least 50% of their patients complete the preoperative questionnaire. We determined how many providers failed to meet this threshold prior to the policy introduction and assessed longitudinal stability of participation rates. Retrospective observational study using data from Hospital Episode Statistics and the national PROM programme from April 2009 to March 2012. We calculated participation rates based on either (a) all PROM records or (b) only those that could be linked to inpatient records; constructed confidence intervals around rates to account for sampling variation; applied precision weighting to allow for volume; and applied risk adjustment. NHS hospitals and private providers in England. NHS patients undergoing elective unilateral hip and knee replacement surgery. Number of providers with participation rates statistically significantly below 50%. Crude rates identified many providers that failed to achieve the 50% threshold but there were substantially fewer after adjusting for uncertainty and precision. While important, risk adjustment required restricting the analysis to linked data. Year-on-year correlation between provider participation rates was moderate. Participation rates have improved over time and only a small number of providers now fall below the threshold, but administering preoperative questionnaires remains problematic in some providers. We recommend that participation rates are based on linked data and take into account sampling variation. © The Royal Society of Medicine.
Harris, Nathaniel; Eudy, Amanda; Clowse, Megan
While increased rheumatic disease activity during pregnancy has been associated with adverse pregnancy outcomes, this activity is typically assessed by the physician. Little is known, however, about the association between patient-reported measures of disease activity and pregnancy outcomes. Univariate and multivariable regression models were used to assess the relationship between patient and physician-reported measures of disease activity and adverse pregnancy outcomes in 225 patients with lupus or rheumatoid arthritis (RA) enrolled in a prospective registry at a single academic center from 2008-2016. In women with RA, patient-reported disease activity is associated with preterm birth (OR 5.9 (1.5-23.9)), and gestational age (beta -1.5 weeks (-2.6, -0.4 weeks)). The physician assessment of disease activity also predicted preterm (OR 2.1 (1.2-3.5)), small for gestational age births (OR 1.8 (1.03-3.1), and gestational age in weeks (beta -0.6 weeks (-0.9, -0.02 weeks)). On the other hand, SLE patient-reported disease activity measures, including the HAQ, pain or global health measures, are not associated with adverse pregnancy outcomes. However, physician measures of SLE disease activity are associated with preterm birth (OR 2.9 (1.-6.3)), cesarean delivery (OR 2.3 (1.0-5.3)), and preeclampsia (OR 2.8 (1.3-6.3)). The results do not appear to be driven by lupus nephritis or antiphospholipid syndrome. For women with RA, patient-reported measures of disease activity may be useful adjuncts to physician-reported measures in identifying pregnancies at greater risk. In contrast, in SLE, no patient-reported measures were associated with adverse outcomes while physician measures of disease activity helped predict several adverse pregnancy outcomes. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.
Gebru, Kerstin; Khalaf, Azzam; Willman, Ania
To describe and analyse to what extent the goals of the education in promoting culturally competent nursing care have been achieved from a student perspective. As Sweden has transformed into a multicultural society over the past 50 years, there is a need to specify, at all levels of the nursing programme, transcultural concepts for the success of integration. A research-based didactic model was designed for the nursing programme at Malmö University and this was followed by investigations of its outcome. The study is a prospective cohort study with an outcome analysis. A descriptive research study with a longitudinal design was performed, with the focus on Swedish nursing students' experiences of transcultural nursing knowledge and their attitudes before and after implementation of the didactic model. The students evaluate highly their competence to meet demands of multicultural health and medical service. Additionally, their ability to recognise and understand the consequences of international migration on health also received a high mean. The study revealed the knowledge and experience acquired by Swedish students in transcultural nursing. The assumption was that a visible development of knowledge should occur during the three years of education. Interpreting the findings, such effectiveness can be found and hopefully the students will be able to give holistic nursing care based on a person's individual culture.
Background Health policy in the UK and elsewhere is prioritising patient empowerment and patient evaluations of healthcare. Patient reported outcome measures now take centre-stage in implementing strategies to increase patient empowerment. This article argues for consideration of patient empowerment itself as a directly measurable patient reported outcome for chronic conditions, highlights some issues in adopting this approach, and outlines a research agenda to enable healthcare evaluation on the basis of patient empowerment. Discussion Patient empowerment is not a well-defined construct. A range of condition-specific and generic patient empowerment questionnaires have been developed; each captures a different construct e.g. personal control, self-efficacy/self-mastery, and each is informed by a different implicit or explicit theoretical framework. This makes it currently problematic to conduct comparative evaluations of healthcare services on the basis of patient empowerment. A case study (clinical genetics) is used to (1) illustrate that patient empowerment can be a valued healthcare outcome, even if patients do not obtain health status benefits, (2) provide a rationale for conducting work necessary to tighten up the patient empowerment construct (3) provide an exemplar to inform design of interventions to increase patient empowerment in chronic disease. Such initiatives could be evaluated on the basis of measurable changes in patient empowerment, if the construct were properly operationalised as a patient reported outcome measure. To facilitate this, research is needed to develop an appropriate and widely applicable generic theoretical framework of patient empowerment to inform (re)development of a generic measure. This research should include developing consensus between patients, clinicians and policymakers about the content and boundaries of the construct before operationalisation. This article also considers a number of issues for society and for healthcare
The intersection of widespread mobile adoption, cloud computing and healthcare will enable patient-reported outcomes to be used to personalize care, draw insights and shorten the cycle from research to clinical implementation. Today, patient-reported outcomes are largely collected as part of a regulatory shift to value-based or bundled care. When patients are able to record their experiences in real-time and combine them with passive data collection from sensors and mobile devices, this information can inform better care for each patient and contribute to the growing body of health data that can be used to draw insights for all patients. This paper explores the current limitations of patient reported outcomes and how mobile health and big data analysis unlocks their potential as a valuable tool to deliver care.
Jereczek-Fossa, Barbara A; Zerini, Dario; Fodor, Cristiana; Santoro, Luigi; Maucieri, Andrea; Gerardi, Marianna A; Vischioni, Barbara; Cambria, Raffaella; Garibaldi, Cristina; Cattani, Federica; Vavassori, Andrea; Matei, Deliu V; Musi, Gennaro; De Cobelli, Ottavio; Orecchia, Roberto
To report the image-guided hypofractionated radiotherapy (hypo-IGRT) outcome for patients with localised prostate cancer according to the new outcome models Trifecta (cancer control, urinary continence, and sexual potency) and SCP (failure-free survival, continence and potency). Between August 2006 and January 2011, 337 patients with cT1-T2N0M0 prostate cancer (median age 73 years) were eligible for a prospective longitudinal study on hypo-IGRT (70.2 Gy/26 fractions) in our Department. Patients completed four questionnaires before treatment, and during follow-up: the International Index of Erectile Function-5 (IIEF-5), the International Prostate Symptom Score (IPSS), and the European Organization for Research and Treatment of Cancer prostate-cancer-specific Quality of Life Questionnaires (QLQ) QLQ-PR25 and QLQ-C30. Baseline and follow-up patient data were analysed according to the Trifecta and SCP outcome models. Cancer control, continence and potency were defined respectively as no evidence of disease, score 1 or 2 for item 36 of the QLQ-PR25 questionnaire, and total score of >16 on the IIEF-5 questionnaire. Patients receiving androgen-deprivation therapy (ADT) at any time were excluded. Trifecta criteria at baseline were met in 72 patients (42% of all ADT-free patients with completed questionnaires). Both at 12 and 24 months after hypo-IGRT, 57% of the Trifecta patients at baseline were still meeting the Trifecta criteria (both oncological and functional success according to the SCP model). The main reason for failing the Trifecta criteria during follow-up was erectile dysfunction: in 18 patients after 6 months follow-up, in 12 patients after 12 months follow-up, and in eight patients after 24 months. Actuarial 2-year Trifecta failure-free survival rate was 44% (95% confidence interval 27-60%). In multivariate analysis no predictors of Trifecta failure were identified. Missing questionnaires was the main limitation of the study. The Trifecta and SCP
Jeffery, Diana D; Tzeng, Janice P; Keefe, Francis J; Porter, Laura S; Hahn, Elizabeth A; Flynn, Kathryn E; Reeve, Bryce B; Weinfurt, Kevin P
For this report, the authors described the initial activities of the Cancer Patient-Reported Outcomes Measurement Information System (PROMIS)-Sexual Function domain group, which is part of the National Institutes of Health Roadmap Initiative to develop brief questionnaires or individually tailored assessments of quality-of-life domains. Presented are a literature review of sexual function measures used in cancer populations and descriptions of the domains found in those measures. By using a consensus-driven approach, an electronic bibliographic search was conducted for articles that were published from 1991 to 2007, and 486 articles were identified for in-depth review. In total, 257 articles reported the administration of a psychometrically evaluated sexual function measure to individuals who were diagnosed with cancer. Apart from the University of California-Los Angeles Prostate Cancer Index, the International Index of Erectile Function, and the Female Sexual Function Index, the 31 identified measures have not been tested widely in cancer populations. Most measures were multidimensional and included domains related to the sexual response cycle and to general sexual satisfaction. The current review supports the need for a flexible, psychometrically robust measure of sexual function for use in oncology settings and strongly justifies the development of the PROMIS-Sexual Function instrument. When the PROMIS-Sexual Function instrument is available publicly, cancer clinicians and researchers will have another measure with which to assess patient-reported sexual function outcomes in addition to the few legacy measures that were identified through this review. Copyright (c) 2009 American Cancer Society.
Full Text Available Background: Health-related quality of life (HRQoL is a rapidly growing area of expertise and the most commonly used patient-reported outcome (PRO. The impact of CF on HRQoL is liable to be great, making CF patients ideal candidates for the application of HRQoL instruments. The aims of this study were to assess the affect of CF on HRQoL, to ascertain the reliability and validity of the UKSIP and the CFQoL in the adult CF population, and to examine their role in the management of patients. Methods: Seventy participants were recruited from the All Wales Adult Cystic Fibrosis Centre at Llandough Hospital, UK. There were two stages to the study; self-report of the UKSIP and CFQoL in the first stage, and completion of the same two questionnaires seven to ten days later for the second stage. Results: The areas of HRQoL most impaired by CF were employment and concerns regarding the future. The UKSIP and CFQoL showed high internal consistency (rα=0.89-0.93 and test-retest reliability (rs=0.57-0.94, p<0.005 in the CF population. Validity was variable; with the UKSIP showing discrimination across socio-demographic factors, whilst the CFQoL showed increased sensitivity to clinical variables. Many parameters influenced patient-reported HRQoL, with the greatest correlations seen with the Borg score (p<0.005. The use of a HRQoL instrument in CF annual reviews is recommended to provide holistic patient care. The results of this study underpin the value of HRQoL as a patient-reported outcome measure in the management of adult CF.
Galal, Sherif; Safwat, Wael
The 5th metacarpal fractures accounts for 38% of all hand fractures given that the neck is the weakest point in metacarpals, so neck fracture is the most common metacarpal fracture. Surgical fixation is also advocated for such fractures to prevent mal-rotation of the little finger which will lead to fingers overlap in a clenched fist. Various methods are available for fixation of such fractures, like intramedullary & transverse pinning. There are very few reports in the literature comparing both techniques. Authors wanted to compare outcomes and complications of transverse pinning versus intramedullary pinning in fifth metacarpal's neck fractures. A single-center, parallel group, prospective, randomized study was conducted at an academic Level 1 Trauma Center from October 2014 to December 2016. A total of 80 patients with 5th metacarpal's neck fractures were randomized to pinning using either transverse pinning (group A) or intramedullary pinning (group B). Patients were assessed clinically on range of motion, patient-reported outcome using the Quick-DASH (Disabilities of the Arm, Shoulder, and Hand) questionnaire & radiographically. Two blinded observers assessed outcomes. At final follow up for each patient (12 months) the statistically significant differences were observed in operative time, the transverse pinning group showed shorter operative time, as well as complication rate as complications were observed only in intramedullary pinning group. No differences were found in range of motion or the Quick -DASH score. Both techniques are equally safe and effective treatment option for 5th metacarpal's neck fractures. The only difference was shorter operative time & less incidence of complications in transverse pinning group. Level II, Therapeutic study.
Hansen Torben B
Full Text Available Abstract Background A fast-track intervention with a short preoperative optimization period and short postoperative hospitalization has a potential for reduced convalescence and thereby a reduced need for postoperative rehabilitation. The purpose of this study was to describe patient-related outcomes, the need for additional rehabilitation after a fast-track total hip arthroplasty (THA, and the association between generic and disease specific outcomes. Methods The study consisted of 196 consecutive patients of which none received additional rehabilitation beyond an instructional exercise plan at discharge, which was adjusted at one in-patient visit. The patients filled in 3 questionnaires to measure health-related quality-of-life (HRQOL and hip specific function (EQ-5 D, SF36, and Harris Hip Score (HHS at 2 time points pre- and 2 time points postoperatively. The observed results were compared to normative population data for EQ-5 D, SF36, and HHS. Results 3-months postoperatively patients had reached a HRQOL level of 0.84 (SD, 0.14, which was similar to the population norm (P = 0.33, whereas they exceeded the population norm at 12 months postoperatively (P P P = 0.35. For HHS, patients never reached the population norm within 12 months postoperatively. Generic and disease specific outcomes were strongly associated. Conclusions If HRQOL is considered the primary outcome after THA, the need for additional postoperative rehabilitation for all THA patients following a fast-track intervention is questionable. However, a pre- or early postoperative physical intervention seems relevant if the PF of the population norm should be reached at 3 months. If disease specific outcome is considered the primary outcome after fast-track THA, clear goals for the rehabilitation must be established before patient selection, intervention type and timing of intervention can be made.
Full Text Available Objective: To investigate patients’ reported outcome following medication with two brands of 400 mg ibuprofen used to alleviate musculoskeletal pains.Methods: Adult peasant manual laborers (85 who met criteria were randomly assigned to receive either of the brands (A or B. Data on pain alleviation were gathered using the Short-Form McGill Pain Questionnaire (SF-MPQ, Visual Analogue Scale (VAS, Present Pain Intensity (PPI, and Clinical Global Impression of Improvement (CGII scales. Interval data obtained from the two brands were compared using the Students’ t-test at 95% confidence interval.Results: There were 42 participants, mean age=29.2 (SD=1.37 assigned to brand A and 43 (mean age=28.8 SD=1.14 in brand B of ibuprofen 400 mg. Brand B was consistently rated higher than brand A. Scores for medication efficacy were 10.4 (SD=1.65 (brand A and 11.4 (SD=1.68 (brand B; t=2.768, P=0.007. Alleviation of pain symptoms: 10.8 (SD=1.64 and 11.6 (SD=1.72; t = 2.194, P=0.031. Similarly, rated scores on the impact of pain on quality of life were 10.5 (SD=2.00 and 12.1 (SD=1.85; t=3.830, P<0.001. There was a reduction in Present Pain Intensity scores by 32.7% and 34.3% for Brand A and brand B participants respectively. The decrease in Visual Analog pain scale score was 35.9% and 37.3% for brand A and brand B participants respectively. The decrease in SF-MPQ was by 85.1% and 69.9% for the brand A and brand B groups respectively. The clinical global impression of improvement for both groups of patients indicated an improvement rate of 71.4% and 61.9% for brand A and 81.4% and 74.4% for brand B participants. Conclusion: This clinical study infers that though the two brands of ibuprofen 400 mg are legally pharmaceutical equivalent, they are not clinically equivalent. In most of the parameters evaluated, brand B was rated more efficacious than brand A. This explains the patients’ preferences and demand for this brand of ibuprofen in the Nigerian community.
Malhotra, Karan; Buraimoh, Olatunbosun; Thornton, James; Cullen, Nicholas; Singh, Dishan; Goldberg, Andrew J
To determine whether an entirely electronic system can be used to capture both patient-reported outcomes (electronic Patient-Reported Outcome Measures, ePROMs) as well as clinician-validated diagnostic and complexity data in an elective surgical orthopaedic outpatient setting. To examine patients' experience of this system and factors impacting their experience. Retrospective analysis of prospectively collected data. Single centre series. Outpatient clinics at an elective foot and ankle unit in the UK. All new adult patients attending elective orthopaedic outpatient clinics over a 32-month period. All patients were invited to complete ePROMs prior to attending their outpatient appointment. At their appointment, those patients who had not completed ePROMs were offered the opportunity to complete it on a tablet device with technical support. Matched diagnostic and complexity data were captured by the treating consultant during the appointment. Capture rates of patient-reported and clinician-reported data. All information and technology (IT) failures, language and disability barriers were captured. Patients were asked to rate their experience of using ePROMs. The scoring systems used included EQ-5D-5L, the Manchester-Oxford Foot Questionnaire (MOxFQ) and the Visual A