Comparing sexual minority cancer survivors recruited through a cancer registry to convenience methods of recruitment.

Science.gov (United States)

Boehmer, Ulrike; Clark, Melissa A; Timm, Alison; Glickman, Mark; Sullivan, Mairead

2011-01-01

Sexual minority women, defined as having a lesbian or bisexual identity or reporting a preference for a female partner, are not considered by cancer surveillance. This study assesses the representativeness of sexual minority breast cancer survivors, defined as having a lesbian or bisexual identity or reporting a preference for a female partner, who were recruited into a convenience sample compared with a population-based registry sample of sexual minority breast cancer survivors. Long-term survivors of non-metastatic breast cancer who self-reported as sexual minority were recruited from a cancer registry and subsequently from the community using convenience recruitment methods. Sexual minority breast cancer survivors who screened eligible participated in a telephone survey about their quality of life and factors associated therewith. Participants in the convenience sample were similar to the registry-based sample with respect to adjustment to cancer, physical health, trust in physician, coping, social support, and sexual minority experiences. Compared with the convenience sample, breast cancer survivors in the registry sample were more likely married, more educated, diagnosed more recently, at an earlier stage of cancer, and more likely treated with breast-conserving surgery; they differed on adjuvant therapies. Because sexual minority breast cancer survivors who volunteered for the community-based sample shared most characteristics of the sample recruited from the cancer registry, we concluded that the community sample had comparable representational quality. In the absence of cancer surveillance of sexual minorities, thoughtful convenience recruitment methods provide good representational quality convenience samples. Copyright © 2011 Jacobs Institute of Women's Health. Published by Elsevier Inc. All rights reserved.

Patient-reported outcome measures in arthroplasty registries

DEFF Research Database (Denmark)

Rolfson, Ola; Bohm, Eric; Franklin, Patricia

2016-01-01

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...

The Savant Syndrome Registry: A Preliminary Report.

Science.gov (United States)

Treffert, Darold A; Rebedew, David L

2015-08-01

A registry has been established to document certain characteristics on a sizeable worldwide sample of individuals with savant syndrome, a rare but remarkable condition in which persons with developmental disabilities, brain injury, or brain disease have some spectacular "islands" of skill or ability that stand in jarring, marked contrast to overall handicap. Of the 319 savants included in the registry, 90% are congenital savants, while 10% are acquired savants. The registry includes individuals from 33 countries, with 70% from the United States or Canada. Sex distribution was 79% male vs. 21% female (4:1). This report summarizes the findings in the congenital savant syndrome category of the registry. Among the individuals with congenital savant syndrome, the most common underlying disability was Autistic Spectrum Disorder (75%); various other central nervous system (CNS) disorders were present in the other 25%. Fifty-five percent possessed a single special skill, while 45% had multiple skills. Music was the most frequent principal skill followed by art, memory, mathematics, calendar calculating, language, visual-spatial/mechanical, athletic, computer, extrasensory perception, and other skills.

Natural history and Predictors of Progression to Sjögren's Syndrome Among Participants of the SICCA registry

DEFF Research Database (Denmark)

Shiboski, Caroline H; Baer, Alan N; Shiboski, Stephen C

2018-01-01

found to have any objective measures of salivary hypofunction, dry eye, focal lymphocytic sialadenitis in minor salivary gland biopsy, or anti-SSA/B antibodies, were recalled over a window of 2 to 3 years after their baseline examinations to repeat all clinical examinations and specimen collections......BACKGROUND/PURPOSE: To explore changes in the phenotypic features of Sjoögren's syndrome (SS), and in SS status among participants in the Sjoögren's International Collaborative Clinical Alliance (SICCA) registry over a 2 to 3-year interval. METHODS: All participants in the SICCA registry who were...

A population based validation study of self-reported pensions and benefits: the Nord-Trøndelag health study (HUNT

Directory of Open Access Journals (Sweden)

Myrtveit Solbjørg Makalani

2013-01-01

Full Text Available Abstract Background Measures of disability pensions, sickness certification and long-term health related benefits are often self-reported in epidemiological studies. Few studies have examined these measures, and the validity is yet to be established. We aimed to estimate the validity of self-reported disability pension, rehabilitation benefit and retirement pension and to explore the benefit status and basic characteristics of those not responding to these items. A large health survey (HUNT2 containing self-reported questionnaire data on sickness benefits and pensions was linked to a national registry of pensions and benefits, used as “gold standard” for the analysis. We investigated two main sources of bias in self-reported data; misclassification - due to participants answering questions incorrectly, and systematic missing/selection bias - when participants do not respond to the questions. Sensitivity, specificity, positive (PPV and negative (NPV predicative value, agreement and Cohen’s Kappa were calculated for each benefit. Co-variables were compared between non-responders and responders. Results In the study-population of 40,633, 9.2% reported receiving disability pension, 1.4% rehabilitation benefits and 6.1% retirement pension. According to the registry, the corresponding numbers were 9.0%, 1.7% and 5.4%. Excluding non-responders, specificity, NPV and agreement were above 98% for all benefits. Sensitivity and PPV were lower. When including non-responders as non-receivers, specificity got higher, sensitivity dropped while the other measures changed less. Between 17.7% and 24.1% did not answer the questions on benefits. Non-responders were older and more likely to be female. They reported more anxiety, more depression, a higher number of somatic diagnoses, less physical activity and lower consumption of alcohol (p  Conclusions The validity of self-reported data on disability pension, rehabilitation benefits and retirement pension is

Participating in an International Stereotactic Radiotherapy Patient Registry: The Establishment of Data Collection Pathways.

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Yahya, Aylin; Arneric, Eva; Kernutt, Elizabeth; Baldacchino, Fiona; Haworth, Claire; Kedda, Mary-Anne; Tang, Colin; Bydder, Sean; Corica, Tammy

2017-06-29

Aim To describe data collection pathways and practical challenges experienced by an academic comprehensive cancer centre aiming to record clinical data for patients being treated with a novel radiotherapy treatment modality. Methods Various options to capture data from all patients treated with the CyberKnife Robotic Radiosurgery System at Sir Charles Gairdner Hospital (SCGH) in Western Australia were explored. An international multicenter web-based secure database established and maintained by the Radiosurgery Society the RSSearch® Patient Registry was selected. Data were collected and entered over four contiguous phases, with either opt-in or opt-out consent and the completion of Patient Reported Outcome questionnaires for specific sub-groups. Results Between April 2014 and June 2016, 461 patients at Sir Charles Gairdner Hospital were enrolled in the RSSearch® Patient Registry with the collection of over 17,500 data items. From 461 patients enrolled, 447 patients were treated with the CyberKnife Robotic Radiosurgery System. The majority of patients were treated for either a malignant primary (43.2%) or metastatic disease (39.4%). The establishment of matrix organisational processes for data collection led to the development of improved workflow patterns and data collection pathways. Conclusions This article describes the processes developed by a single centre to establish an efficient system for data collection and participation in an international registry. The opt-out approach was more efficient in terms of patient recruitment compared to the informed-consent method used in earlier phases. The experience of this single centre may help inform other institutions considering data collection options for assessments of new or novel treatments.

Bilateral Arthrodesis of the Ankle Joint: Self-Reported Outcomes in 35 Patients From the Swedish Ankle Registry.

Science.gov (United States)

Henricson, Anders; Kamrad, Ilka; Rosengren, Björn; Carlsson, Åke

Bilateral ankle arthrodesis is seldom performed, and results concerning the outcome and satisfaction can only sparsely be found in published studies. We analyzed the data from 35 patients who had undergone bilateral ankle arthrodesis in the Swedish Ankle Registry using patient-reported generic and region-specific outcome measures. Of 36 talocrural arthrodeses and 34 tibio-talar-calcaneal arthrodeses, 6 ankles (9%) had undergone repeat arthrodesis because of nonunion. After a mean follow-up period of 47 ± 5 (range 12 to 194) months, the mean scores were as follows: self-reported foot and ankle score, 33 ± 10 (range 4 to 48); the EuroQol Group's EQ-5D ™ score, 0.67 ± 0.28 (range -0.11 to 1), the EuroQol Group's visual analog scale score, 70 ± 19 (range 20 to 95), 36-item Short Form Health Survey (SF-36) physical domain, 39 ± 11 (range 16 to 58); and SF-36 mental domain, 54 ± 14 (range 17 to 71). Patients with rheumatoid arthritis seemed to have similar self-reported foot and ankle scores but possibly lower EQ-5D ™ and SF-36 scores. Those with talocrural arthrodeses scored higher than did those with tibio-talar-calcaneal arthrodeses on the EQ5D ™ and SF-36 questionnaires (p = .03 and p = .04). In 64 of 70 ankles (91%), the patients were satisfied or very satisfied with the outcome. In conclusion, we consider bilateral ankle arthrodesis to be a reasonable treatment for symptomatic hindfoot arthritis, with high postoperative mid-term satisfaction and satisfactory scores on the patient-reported generic and region-specific outcome measures, when no other treatment option is available. Copyright © 2016 American College of Foot and Ankle Surgeons. Published by Elsevier Inc. All rights reserved.

Validity of Race, Ethnicity, and National Origin in Population-based Cancer Registries and Rapid Case Ascertainment Enhanced With a Spanish Surname List.

Science.gov (United States)

Clarke, Lisa C; Rull, Rudolph P; Ayanian, John Z; Boer, Robert; Deapen, Dennis; West, Dee W; Kahn, Katherine L

2016-01-01

Accurate information regarding race, ethnicity, and national origins is critical for identifying disparities in the cancer burden. To examine the use of a Spanish surname list to improve the quality of race-related information obtained from rapid case ascertainment (RCA) and to estimate the accuracy of race-related information obtained from cancer registry records collected by routine reporting. Self-reported survey responses of 3954 participants from California enrolled in the Cancer Care Outcomes Research and Surveillance Consortium. Sensitivity, specificity, positive predictive value, and percent agreement. We used logistic regression to identify predictors of underreporting and overreporting of a race/ethnicity. Use of the Spanish surname list increased the sensitivity of RCA for Latino ethnicity from 37% to 83%. Sensitivity for cancer registry records collected by routine reporting was ≥95% for whites, blacks, and Asians, and specificity was high for all groups (86%-100%). However, patterns of misclassification by race/ethnicity were found that could lead to biased cancer statistics for specific race/ethnicities. Discordance between self-reported and registry-reported race/ethnicity was more likely for women, Latinos, and Asians. Methods to improve race and ethnicity data, such as using Spanish surnames in RCA and instituting data collection guidelines for hospitals, are needed to ensure minorities are accurately represented in clinical and epidemiological research.

75 FR 29350 - Draft Guidance for Industry: Questions and Answers Regarding the Reportable Food Registry as...

Science.gov (United States)

2010-05-25

...] Draft Guidance for Industry: Questions and Answers Regarding the Reportable Food Registry as Established.... The agency is also seeking comments from industry on the Reportable Food Registry requirements, and... the implementation of the Reportable Food Registry on September 8, 2009, and informs industry about...

Patient registries: useful tools for clinical research in myasthenia gravis.

Science.gov (United States)

Baggi, Fulvio; Mantegazza, Renato; Antozzi, Carlo; Sanders, Donald

2012-12-01

Clinical registries may facilitate research on myasthenia gravis (MG) in several ways: as a source of demographic, clinical, biological, and immunological data on large numbers of patients with this rare disease; as a source of referrals for clinical trials; and by allowing rapid identification of MG patients with specific features. Physician-derived registries have the added advantage of incorporating diagnostic and treatment data that may allow comparison of outcomes from different therapeutic approaches, which can be supplemented with patient self-reported data. We report the demographic analysis of MG patients in two large physician-derived registries, the Duke MG Patient Registry, at the Duke University Medical Center, and the INNCB MG Registry, at the Istituto Neurologico Carlo Besta, as a preliminary study to assess the consistency of the two data sets. These registries share a common structure, with an inner core of common data elements (CDE) that facilitate data analysis. The CDEs are concordant with the MG-specific CDEs developed under the National Institute of Neurological Disorders and Stroke Common Data Elements Project. © 2012 New York Academy of Sciences.

Outcomes for the Commercial Use of Self-Expanding Prostheses in Transcatheter Aortic Valve Replacement: A Report From the STS/ACC TVT Registry.

Science.gov (United States)

Sorajja, Paul; Kodali, Susheel; Reardon, Michael J; Szeto, Wilson Y; Chetcuti, Stanley J; Hermiller, James; Chenoweth, Sharla; Adams, David H; Popma, Jeffrey J

2017-10-23

The authors sought to compare the outcomes of commercial transcatheter aortic valve replacement (TAVR) with the repositionable Evolut R platform to those observed with the CoreValve device in the Society of Thoracic Surgeons (STS)/American College of Cardiology (ACC) Transcatheter Valve Therapy (TVT) Registry. TAVR continues to evolve, with rapid adoption of iterative changes for commercial practice. Insight into the outcomes of this adoption is needed. Patients in the TVT Registry who had TAVR using a 23-, 26-, or 29-mm self-expanding prosthesis were enrolled. Site-reported events for procedural, in-hospital, and 30-day outcomes were examined. Between January 2014 and April 2016, 9,616 patients underwent TAVR with a self-expanding prosthesis with data entered in the TVT Registry. Compared with patients treated with CoreValve TAVR, those who received Evolut R TAVR had a lower STS-PROM score (8.0 ± 5.4% vs. 8.7 ± 5.3%; p < 0.001), more iliofemoral access (91.6% vs. 89.2%; p < 0.001), and more frequently had conscious sedation (27.4% vs. 12.7%; p < 0.001). With Evolut R TAVR, there was less need for a second prosthesis (2.2% vs. 4.5%; p < 0.001), less device migration (0.2% vs. 0.6%; p = 0.01), a lower incidence of moderate/severe paravalvular regurgitation (post-procedure, 4.4% vs. 6.2%; p < 0.001), and shorter median hospital stay (4.0 vs. 5.0 days; p < 0.001). Patients treated with Evolut R TAVR had greater device success (96.3% vs. 94.9%; p = 0.001). At 30 days, Evolut R patients had both lower mortality (3.7% vs. 5.3%; p < 0.001) and less need for a pacemaker (18.3% vs. 20.1%; p = 0.03). Commercial adoption of the Evolut R platform is associated with significant improvements in acute outcomes for patients undergoing TAVR for aortic stenosis. Copyright © 2017 American College of Cardiology Foundation. Published by Elsevier Inc. All rights reserved.

Cohort profile: the TrueNTH Global Registry - an international registry to monitor and improve localised prostate cancer health outcomes.

Science.gov (United States)

Evans, Sue M; Millar, Jeremy L; Moore, Caroline M; Lewis, John D; Huland, Hartwig; Sampurno, Fanny; Connor, Sarah E; Villanti, Paul; Litwin, Mark S

2017-11-28

Globally, prostate cancer treatment and outcomes for men vary according to where they live, their race and the care they receive. The TrueNTH Global Registry project was established as an international registry monitoring care provided to men with localised prostate cancer (CaP). Sites with existing CaP databases in Movember fundraising countries were invited to participate in the international registry. In total, 25 Local Data Centres (LDCs) representing 113 participating sites across 13 countries have nominated to contribute to the project. It will collect a dataset based on the International Consortium for Health Outcome Measures (ICHOM) standardised dataset for localised CaP. A governance strategy has been developed to oversee registry operation, including transmission of reversibly anonymised data. LDCs are represented on the Project Steering Committee, reporting to an Executive Committee. A Project Coordination Centre and Data Coordination Centre (DCC) have been established. A project was undertaken to compare existing datasets, understand capacity at project commencement (baseline) to collect the ICHOM dataset and assist in determining the final data dictionary. 21/25 LDCs provided data dictionaries for review. Some ICHOM data fields were well collected (diagnosis, treatment start dates) and others poorly collected (complications, comorbidities). 17/94 (18%) ICHOM data fields were relegated to non-mandatory fields due to poor capture by most existing registries. Participating sites will transmit data through a web interface biannually to the DCC. Recruitment to the TrueNTH Global Registry-PCOR project will commence in late 2017 with sites progressively contributing reversibly anonymised data following ethical review in local regions. Researchers will have capacity to source deidentified data after the establishment phase. Quality indicators are to be established through a modified Delphi approach in later 2017, and it is anticipated that reports on

Accuracy of self-reported length of coma and posttraumatic amnesia in persons with medically verified traumatic brain injury.

Science.gov (United States)

Sherer, Mark; Sander, Angelle M; Maestas, Kacey Little; Pastorek, Nicholas J; Nick, Todd G; Li, Jingyun

2015-04-01

To determine the accuracy of self-reported length of coma and posttraumatic amnesia (PTA) in persons with medically verified traumatic brain injury (TBI) and to investigate factors that affect self-report of length of coma and PTA duration. Prospective cohort study. Specialized rehabilitation center with inpatient and outpatient programs. Persons (N=242) with medically verified TBI who were identified from a registry of persons who had previously participated in TBI-related research. Not applicable. Self-reported length of coma and self-reported PTA duration. Review of medical records revealed that the mean medically documented length of coma and PTA duration was 6.9±12 and 19.2±22 days, respectively, and the mean self-reported length of coma and PTA duration was 16.7±22 and 106±194 days, respectively. The average discrepancy between self-report and medical record for length of coma and PTA duration was 8.2±21 and 64±176 days, respectively. Multivariable regression models revealed that time since injury, performance on cognitive tests, and medical record values were associated with self-reported values for both length of coma and PTA duration. In this investigation, persons with medically verified TBI showed poor accuracy in their self-report of length of coma and PTA duration. Discrepancies were large enough to affect injury severity classification. Caution should be exercised when considering self-report of length of coma and PTA duration. Copyright © 2015 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.

Self-report and long-term field measures of MP3 player use: how accurate is self-report?

Science.gov (United States)

Portnuff, C D F; Fligor, B J; Arehart, K H

2013-02-01

This study was designed to evaluate the usage patterns of portable listening device (PLD) listeners, and the relationships between self-report measures and long-term dosimetry measures of listening habits. This study used a descriptive correlational design. Participants (N = 52) were 18-29 year old men and women who completed surveys. A randomly assigned subset (N = 24) of participants had their listening monitored by dosimetry for one week. Median weekly noise doses reported and measured through dosimetry were low (9-93%), but 14.3% of participants reported exceeding a 100% noise dose weekly. When measured by dosimetry, 16.7% of participants exceeded a 100% noise dose weekly. The self-report question that best predicted the dosimetry-measured dose asked participants to report listening duration and usual listening level on a visual-analog scale. This study reports a novel dosimetry system that can provide accurate measures of PLD use over time. When not feasible, though, the self-report question described could provide a useful research or clinical tool to estimate exposure from PLD use. Among the participants in this study, a small but substantial percentage of PLD users incurred exposure from PLD use alone that increases their risk of music-induced hearing loss.

Attention deficit hyperactivity disorder symptom severity and sleep problems in adult participants of the Netherlands sleep registry

NARCIS (Netherlands)

Vogel, Suzan W N; Bijlenga, Denise; Benjamins, Jeroen S; Beekman, Aartjan T F; Kooij, J J Sandra; Van Someren, Eus J W

2017-01-01

BACKGROUND: We examined whether current overall attention deficit hyperactivity disorder (ADHD), inattention, or hyperactivity symptom severities are associated with the current presence and persistent history of sleep problems. METHODS: N = 942 participants of the Netherlands Sleep Registry filled

Attention deficit hyperactivity disorder symptom severity and sleep problems in adult participants of the Netherlands sleep registry

NARCIS (Netherlands)

Vogel, Suzan W.N.; Bijlenga, Denise; Benjamins, Jeroen S.; Beekman, Aartjan T.F.; Kooij, J. J.Sandra; Van Someren, Eus J W

2017-01-01

Background We examined whether current overall attention deficit hyperactivity disorder (ADHD), inattention, or hyperactivity symptom severities are associated with the current presence and persistent history of sleep problems. Methods N = 942 participants of the Netherlands Sleep Registry filled

[The user´s reporting from the national registry of catheter aortic valve implantations (Czech TAVI Registry): the possibilities of the analytical reports based on the database system TrialDB2].

Science.gov (United States)

Bláha, Milan; Kala, Petr; Klimeš, Daniel; Bernat, Ivo; Branny, Marian; Cervinka, Pavel; Horák, Jan; Kočka, Viktor; Mates, Martin; Němec, Petr; Pešl, Ladislav; Stípal, Roman; Sťásek, Josef; Zelízko, Michael

2014-10-01

Assessment of the treatment procedures and their results is increasingly important in current medicine. The emphasis is put on an effective use of the health technologies (HTA). Unlike randomised studies, which involve strictly selected groups of patients who meet inclusion and exclusion criterias, the multicentre clinical registries provide a real-life picture of the treatment safety and effectiveness. Well prepared registries involve both research database and a friendly user interface enabling collection of parametric and easily analyzable data. Although there are some technological aspects aiming to ensure a maximum quality of entered data, cooperation with the users and data managers is essential. Such a registry, otherwise meaningful, must provide answers to previously defined medical hypotheses. Regular feedback to users (so called benchmarking or reporting) is considered to be of key importance. The Czech TAVI Registry (CTR) is a good example of reaching all of the above defined criterias. This registry contains data of approximately 95 % of all transcatheter aortic valve implantations (TAVI) performed in the Czech Republic. It is based on a general system aimed at the design of clinical trials, namely the TrialDB2 (a database system for clinical registries developed by the Institute of Biostatistics and Analyses at the Masaryk University (IBA MU). CTR has been run as an English-language version under the auspices of the Czech Society of Cardiology and represents one of the top-quality registries maintained by IBA MU. This paper presents the currently available database systems and some reports from this particular registry.

Comparison of self-reported and register data on sickness absence among Norwegian patients participating in an occupational rehabilitation program

Directory of Open Access Journals (Sweden)

Irene Øyeflaten

2010-01-01

Full Text Available Background: Sick leave and return to work are common outcome variables in studies where the aim is to measure the effect of targeted interventions for individuals that are on sick leave benefits or other allowances. Use of official register data is often restricted, and research on sick leave and return to work are often based on the participants self-reports. However, there is insufficient documentation that there is agreement between self-reports and register data on sick leave benefits and allowances.Aims: The aim of this study was to analyse the individuals' knowledge about states of sick leave benefits or allowances compared with register data from The Labour and Welfare Administration (NAV in Norway.Method: 153 individuals, sick-listed or on allowances, participated in a 4-week inpatient occupational rehabilitation program. 132 (86% answered a questionnaire on assessments of work, sick leave, and allowances three months after completed rehabilitation. Self-reported data were compared with register data from NAV according to four categories: working, sick-listed, on medical/vocational rehabilitation allowance or disability pension. Agreement between self-reported and register data was evaluated in cross-tabulations and reported with kappa values. Stratified analyses were done for gender, age, education, medical diagnosis and length of sick leave/allowances at baseline.Results: Good agreement was found for medical/vocational rehabilitation allowance (kappa=.70 and disability pension (kappa=.65. Moderate agreement was found for working (kappa=.49 and fair agreement for sick-listed (kappa=.36. Stratified analyses showed significant better kappa values for individuals that had been sick-listed less than 12 months before entering the rehabilitation program.Conclusions: Agreements from good to fair were found between self-reported and official register data on sick leave. However, official register data is preferred in research because this will

Veteran participation in the integrative health and wellness program: Impact on self-reported mental and physical health outcomes.

Science.gov (United States)

Hull, Amanda; Brooks Holliday, Stephanie; Eickhoff, Christine; Sullivan, Patrick; Courtney, Rena; Sossin, Kayla; Adams, Alyssa; Reinhard, Matthew

2018-04-05

Complementary and integrative health (CIH) services are being used more widely across the nation, including in both military and veteran hospital settings. Literature suggests that a variety of CIH services show promise in treating a wide range of physical and mental health disorders. Notably, the Department of Veterans Affairs is implementing CIH services within the context of a health care transformation, changing from disease based health care to a personalized, proactive, patient-centered approach where the veteran, not the disease, is at the center of care. This study examines self-reported physical and mental health outcomes associated with participation in the Integrative Health and Wellness Program, a comprehensive CIH program at the Washington DC VA Medical Center and one of the first wellbeing programs of its kind within the VA system. Using a prospective cohort design, veterans enrolled in the Integrative Health and Wellness Program filled out self-report measures of physical and mental health throughout program participation, including at enrollment, 12 weeks, and 6 months. Analyses revealed that veterans reported significant improvements in their most salient symptoms of concern (primarily pain or mental health symptoms), physical quality of life, wellbeing, and ability to participate in valued activities at follow-up assessments. These results illustrate the potential of CIH services, provided within a comprehensive clinic focused on wellbeing not disease, to improve self-reported health, wellbeing, and quality of life in a veteran population. Additionally, data support recent VA initiatives to increase the range of CIH services available and the continued growth of wellbeing programs within VA settings. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

The Challenges of Using Self-Report Measures with People with Severe Mental Illness: Four Participants' Experiences of the Research Process.

Science.gov (United States)

Bibb, Jennifer; McFerran, Katrina Skewes

2017-08-01

This study aimed to explore four mental health consumers' experiences of completing self-report outcome measures in a research project. Participants were recruited from a community mental health organisation in Melbourne and were interviewed upon completion of a mixed methods research study where they were asked to complete a series of self-report outcome measures. Descriptive phenomenological micro-analysis was used to analyse interview data and is presented along with the researchers' observations during the data collection process. Results revealed that participants found the outcome measures cognitively challenging and the language used in the measures did not support the empowering intentions of mental health recovery. The authors suggest that the value of completing surveys for people with severe mental illness needs to be carefully considered so that the research process does not diminish other benefits of participation.

Self-perceptions, self-worth and sport participation in adolescents.

Science.gov (United States)

Balaguer, Isabel; Atienza, Francisco L; Duda, Joan L

2012-07-01

The purpose of this study was to study the associations between specific self-perceptions and global self-worth with different frequency levels of sport participation among Spanish boys and girls adolescents. Students (457 boys and 460 girls) completed the Self Perception Profile for Children (Harter, 1985) and items assessing sport engagement from The Health Behavior in School Children Questionnaire (Wold, 1995). Results showed that some specific dimensions of self-perception were related to different frequency of sport participation whereas overall judgments of self-worth did not. Specifically, for boys and girls, higher levels of sport participation were positively associated to Athletic Competence, and for boys were also associated with Physical Appearance and Social Acceptance. The potential implications of domain specific socialisation processes on the configuration of self-perceptions are highlighted.

Self-reported musculoskeletal pain predicts long-term increase in general health care use

DEFF Research Database (Denmark)

Hartvigsen, Jan; Davidsen, Michael; Søgaard, Karen

2014-01-01

reported during the past two weeks from the Danish National Cohort Study were merged with data from the Danish National Health Insurance Registry and the National Patient Registry containing information on consultations in the Danish primary and secondary care sector. Absolute and relative rates for all......Aims: Musculoskeletal pain and disability is a modern epidemic and a major reason for seeking health care. The aim of this study is to determine absolute and relative rates of care seeking over 20 years for adults reporting musculoskeletal complaints. Methods: Interview data on musculoskeletal pain...... to any of the outcomes. CONCLUSIONS SELF-REPORT OF MUSCULOSKELETAL PAIN REPORTED WITHIN THE PAST TWO WEEKS PREDICTS A STATISTICALLY SIGNIFICANT LONG-TERM INCREASE IN GENERAL USE OF HEALTH CARE SERVICES IN BOTH THE PRIMARY AND THE SECONDARY HEALTH CARE SECTOR:...

Self-reported skin morbidity in Denmark

DEFF Research Database (Denmark)

Miller, Iben Marie; Zarchi, Kian; Ellervik, Christina

2016-01-01

Skin diseases are thought to be common in the general population. In 2004, a cross-sectional study in Norway, using a validated questionnaire for 18,770 individuals, revealed a high prevalence of skin diseases in the general population. To describe the prevalence of self-reported skin morbidities...... questionnaire. In total, 17.2% self-reported skin complaints. The most prominent self-reported skin complaint was itch with an overall prevalence of 6.5%. The skin morbidity most influenced by age was pimples. There was a uniform pattern showing fewer skin complaints with increasing education. Women reported...... skin morbidities more frequently than men. Participants in employment reported fewer skin morbidities compared to unemployed participants. Skin morbidities in Denmark are common, and the distribution of prevalence estimates in the Danish population parallel those of the Norwegian population, although...

Development of an International Prostate Cancer Outcomes Registry.

Science.gov (United States)

Evans, Sue M; Nag, Nupur; Roder, David; Brooks, Andrew; Millar, Jeremy L; Moretti, Kim L; Pryor, David; Skala, Marketa; McNeil, John J

2016-04-01

To establish a Prostate Cancer Outcomes Registry-Australia and New Zealand (PCOR-ANZ) for monitoring outcomes of prostate cancer treatment and care, in a cost-effective manner. Stakeholders were recruited based on their interest, importance in achieving the monitoring and reporting of clinical practice and patient outcomes, and in amalgamation of existing registries. Each participating jurisdiction is responsible for local governance, site recruitment, data collection, and data transfer into the PCOR-ANZ. To establish each local registry, hospitals and clinicians within a jurisdiction were approached to voluntarily contribute to the registry following relevant ethical approval. Patient contact occurs following notification of prostate cancer through a hospital or pathology report, or from a cancer registry. Patient registration is based on an opt-out model. The PCOR-ANZ is a secure web-based registry adhering to ISO 27001 standards. Based on a standardised minimum data set, information on demographics, diagnosis, treatment, outcomes, and patient reported quality of life, are collected. Eight of nine jurisdictions have agreed to contribute to the PCOR-ANZ. Each jurisdiction has commenced implementation of necessary infrastructure to support rapid rollout. PCOR-ANZ has defined a minimum data set for collection, to enable analysis of key quality indicators that will aid in assessing clinical practice and patient focused outcomes. PCOR-ANZ will provide a useful resource of risk-adjusted evidence-based data to clinicians, hospitals, and decision makers on prostate cancer clinical practice. © 2016 The Authors BJU International © 2016 BJU International Published by John Wiley & Sons Ltd.

Utility of registries for post-marketing evaluation of medicines. A survey of Swedish health care quality registries from a regulatory perspective.

Science.gov (United States)

Feltelius, Nils; Gedeborg, Rolf; Holm, Lennart; Zethelius, Björn

2017-06-01

The aim of this study was to describe content and procedures in some selected Swedish health care quality registries (QRs) of relevance to regulatory decision-making. A workshop was organized with participation of seven Swedish QRs which subsequently answered a questionnaire regarding registry content on drug treatments and outcomes. Patient populations, coverage, data handling and quality control, as well as legal and ethical aspects are presented. Scientific publications from the QRs are used as a complementary measure of quality and scientific relevance. The registries under study collect clinical data of high relevance to regulatory and health technology agencies. Five out of seven registries provide information on the drug of interest. When applying external quality criteria, we found a high degree of fulfillment, although information on medication was not sufficient to answer all questions of regulatory interest. A notable strength is the option for linkage to the Prescribed Drug Registry and to information on education and socioeconomic status. Data on drugs used during hospitalization were also collected to some extent. Outcome measures collected resemble those used in relevant clinical trials. All registries collected patient-reported outcome measures. The number of publications from the registries was substantial, with studies of appropriate design, including randomized registry trials. Quality registries may provide a valuable source of post-marketing data on drug effectiveness, safety, and cost-effectiveness. Closer collaboration between registries and regulators to improve quality and usefulness of registry data could benefit both regulatory utility and value for health care providers.

Identifying specific non-attending groups in breast cancer screening - population-based registry study of participation and socio-demography

Directory of Open Access Journals (Sweden)

Jensen Line

2012-11-01

Full Text Available Abstract Background A population-based breast cancer screening programme was implemented in the Central Denmark Region in 2008–09. The objective of this registry-based study was to examine the association between socio-demographic characteristics and screening participation and to examine whether the group of non-participants can be regarded as a homogeneous group of women. Method Participation status was obtained from a regional database for all women invited to the first screening round in the Central Denmark Region in 2008–2009 (n=149,234. Participation data was linked to registries containing socio-demographic information. Distance to screening site was calculated using ArcGIS. Participation was divided into ‘participants’ and ‘non-participants’, and non-participants were further stratified into ‘active non-participants’ and ‘passive non-participants’ based on whether the woman called and cancelled her participation or was a ‘no-show’. Results The screening participation rate was 78.9%. In multivariate analyses, non-participation was associated with older age, immigrant status, low OECD-adjusted household income, high and low level education compared with middle level education, unemployment, being unmarried, distance to screening site >20 km, being a tenant and no access to a vehicle. Active and passive non-participants comprised two distinct groups with different socio-demographic characteristics, with passive non-participants being more socially deprived compared with active non-participants. Conclusion Non-participation was associated with low social status e.g. low income, unemployment, no access to vehicle and status as tenant. Non-participants were also more likely than participants to be older, single, and of non-Danish origin. Compared to active non-participants, passive non-participants were characterized by e.g. lower income and lower educational level. Different interventions might be warranted to increase

Validation of Self-Reported Cognitive Problems with Objective ...

Science.gov (United States)

There is a lack of validation of self-reported cognitive problems with objective neuropsychological measures. The validity of four self-reported cognitive items from a health questionnaire (HQ) and the Symptoms Checklist 90-Revised (SCL-90-R) was examined with objective clinical neuropsychological test performance in 147 manganese (Mn) exposed residents. These residents were from two Ohio towns exposed to ambient air-Mn from an industrial source with modeled average air-Mn concentrations of 0.54 µg/m3 (range: 0.01-4.58) and were part of a larger study of cognitive, motor, tremor abnormalities and their relationship to Mn exposure.The primarily white (94.6%) participants (aged 30-64) lived in the towns for at least 10 years (range: 10-64) and had 13.9 years of education, on average. In the last 7 days before testing, 94 (64.4%) participants self-reported concentration problems and 105 (71.8%) self-reported memory problems. After adjusting for age and education, participants who self-reported cognitive problems did not perform worse on the objective neuropsychological measures than those who reported not having problems, except on 1 of 17 neuropsychological tests (Stroop Color). Greater levels of depression and female sex predicted having more self-reported cognitive problems. Higher education was associated with fewer self-reported cognitive problems. Measures of Mn in air, blood, hair, and toenails were not associated with subjective cognitive self-reported p

United States transuranium registry: Annual report, 1 October 1987--30 September 1988

International Nuclear Information System (INIS)

Swint, M.J.; Kathren, R.L.

1989-04-01

The primary objective this year was to initiate evaluation of Registry Case 246, an individual who had incurred the largest recorded human deposition of Am-241 as a result of a chemical explosion in a glove box. Because of the potential importance of this case, invitations for collaborative research were solicited from the scientific community. Other projects during the year included an international intercomparison of radiochemical analysis for actinides in tissue, a comparison of in-vivo and postmortem deposition estimates, a study of the fractionation of Am-241 and Pu-239+40 in skeleton and live, preliminary evaluation and modelling of the second whole body donation to the Registry, and a study of the distribution of actinides in lung and associated lymph nodes. The Registry was invited to participate in two international meetings during the year presenting evaluations and recommendations based on data gathered over more than 20 years of operation. A list of the papers presented at these meetings is included. 17 refs

Summary of data held by the National Registry for Radiation Workers

CERN Document Server

Kendall, G M; O'Hagen, J A; Rees, S; Walker, S M

1988-01-01

This report summarises the data held by the National Registry for Radiation Workers at the end of 1985. Agreement has been reached with the participating organisations for transfer of records on 97,000 individuals. However, some individuals have been employed by more than one participating organisation and a few (2%) have refused to participate, so the final study population will be somewhat smaller. Over 95% of participants have been registered and arrangements are in hand to include most of the remainder. Although some information is still outstanding, there has been a considerable improvement since the publication of the second supplement to NRPB-R116 (Protocol for the National Registry for Radiation Workers) which described the database at the end of 1983. Details are given for each of the participating organisations.

Factors Associated With Participation and Change Over Time in Domestic Life, Peer Relations, and School for Adolescents With and Without Self-Reported Neurodevelopmental Disorders. A Follow-Up Prospective Study

Directory of Open Access Journals (Sweden)

Frida Lygnegård

2018-04-01

Full Text Available Even though participation in everyday events is a vital part in the fulfillment of human rights, adolescents with neurodevelopmental disorders (NDD often face participation restrictions in every-day activities. Few studies have investigated the predictors for participation in different contexts, over time and in relation to the same outcome variables.Objective: Objective of the current study was therefore to investigate predictors of change in participation operationalized as frequency of attendance and perceived importance in domestic life activities, peer related activities, and school activities as experienced by adolescents with and without self-reported neurodevelopmental disorders.Method: Associations with participation, both in terms of frequency and perceived importance, in domestic life, peer relations, and the school setting were investigated using six independent variables measuring experience of time and self, sex, age, stress, support from siblings, and atmosphere in family at two-time (with ~2 years in between. The sample consisted of adolescents with and without self-reported NDD (n = 916. Adolescents with self-reported NDD were n = 154 and adolescents without self-reported NDD was n = 762. Data was collected via self-reported questionnaires administered in schools.Results: Three key findings are presented. (1 more factors were associated with participation outcomes at time1 for adolescents without NDD than for adolescents with NDD, but this difference in the number of factors decreases with time; (2 few associations were related to time for both adolescents with and without NDD; and (3 patterns of predicting variables were different for adolescents with and without NDD.Conclusion: The findings indicate that the factors related to participation in and outside school differs between groups, when the impairment or disability is not considered as a predictor for participation. This study supports the need for using a multidimensional

Support for immunization registries among parents of vaccinated and unvaccinated school-aged children: a case control study

Directory of Open Access Journals (Sweden)

Pan William KY

2006-09-01

Full Text Available Abstract Background Immunizations have reduced childhood vaccine preventable disease incidence by 98–100%. Continued vaccine preventable disease control depends on high immunization coverage. Immunization registries help ensure high coverage by recording childhood immunizations administered, generating reminders when immunizations are due, calculating immunization coverage and identifying pockets needing immunization services, and improving vaccine safety by reducing over-immunization and providing data for post-licensure vaccine safety studies. Despite substantial resources directed towards registry development in the U.S., only 48% of children were enrolled in a registry in 2004. Parental attitudes likely impact child participation. Consequently, the purpose of this study was to assess the attitudes of parents of vaccinated and unvaccinated school-aged children regarding: support for immunization registries; laws authorizing registries and mandating provider reporting; opt-in versus opt-out registry participation; and financial worth and responsibility of registry development and implementation. Methods A case control study of parents of 815 children exempt from school vaccination requirements and 1630 fully vaccinated children was conducted. Children were recruited from 112 elementary schools in Colorado, Massachusetts, Missouri, and Washington. Surveys administered to the parents, asked about views on registries and perceived utility and safety of vaccines. Parental views were summarized and logistic regression models compared differences between parents of exempt and vaccinated children. Results Surveys were completed by 56.1% of respondents. Fewer than 10% of parents were aware of immunization registries in their communities. Among parents aware of registries, exempt children were more likely to be enrolled (65.0% than vaccinated children (26.5% (p value = 0.01. A substantial proportion of parents of exempt children support immunization

Self-Reported Employment Status and Social Participation After Successful Kidney Transplantation.

Science.gov (United States)

Parajuli, Sandesh; Singh, Jagmeet; Sandal, Shaifali; Liebman, Scott E; Demme, Richard A

2016-03-01

Kidney transplantation (KTX) is considered the treatment of choice for most individuals with end-stage kidney disease. The purpose of this study was to assess the employment status and social participation after successful KTX. This was a retrospective cross-sectional study. Eligible participants were patients who received a transplant ≥1 year ago and who were previously on hemodialysis (HD) for ≥1 year. Two hundred individuals participated in this study. A significant number (93.5%) of patients reported they were working prior to HD versus 35% while on HD. Only 14% reported receiving disability benefits prior to HD versus 75% receiving disability while on HD. Comparing transplant recipients with pre-HD patients, 35.5% versus 93.5% reported working, and 74.5% versus 14% reported receiving disability benefits, respectively. After transplant, patients were more likely to join recreational clubs, travel frequently, and participate in recreational/religious activities and social events than when they were on HD. Posttransplant, these individuals are more likely to participate in social and leisure activities, but the majority did not resume employment and continued to receive disability payments. Future studies could explore barriers to employment in patients who underwent successful transplantation and the causes and factors as to why these individuals continue to receive disability benefits. © 2016, NATCO.

Patient contributions during primary care consultations for hypertension after self-reporting via a mobile phone self-management support system.

Science.gov (United States)

Bengtsson, Ulrika; Kjellgren, Karin; Hallberg, Inger; Lundin, Mona; Mäkitalo, Åsa

2018-03-01

This paper reports on how the clinical consultation in primary care is performed under the new premises of patients' daily self-reporting and self-generation of data. The aim was to explore and describe the structure, topic initiation and patients' contributions in follow-up consultations after eight weeks of self-reporting through a mobile phone-based hypertension self-management support system. A qualitative, explorative study design was used, examining 20 audio- (n = 10) and video-recorded (n = 10) follow-up consultations in primary care hypertension management, through interaction analysis. Clinical trials registry: ClinicalTrials.gov NCT01510301. Four primary health care centers in Sweden. Patients with hypertension (n = 20) and their health care professional (n = 7). The consultations comprised three phases: opening, examination and closing. The most common topic was blood pressure (BP) put in relation to self-reported variables, for example, physical activity and stress. Topic initiation was distributed symmetrically between parties and BP talk was lifestyle-centered. The patients' contributed to the interpretation of BP values by connecting them to specific occasions, providing insights to the link between BP measurements and everyday life activities. Patients' contribution through interpretations of BP values to specific situations in their own lives brought on consultations where the patient as a person in context became salient. Further, the patients' and health care professionals' equal contribution during the consultations showed actively involved patients. The mobile phone-based self-management support system can thus be used to support patient involvement in consultations with a person-centered approach in primary care hypertension management Key points   The clinical consultation is important to provide opportunities for patients to gain understanding of factors affecting high blood pressure, and for health care professionals to

Evaluating the Efficacy of a Registry linked to a Consent to Re-Contact Program and Communication Strategies for Recruiting and Enrolling Participants into Clinical Trials.

Science.gov (United States)

Flood-Grady, Elizabeth; Clark, Virginia C; Bauer, Angie; Morelli, Lauren; Horne, Patrick; Krieger, Janice L; Nelson, David R

2017-12-01

Although registries can rapidly identify clinical study participants, it is unknown which follow up methods for recruiting are most effective. Our goal is to examine the efficacy of three communication strategies for recruiting and enrolling patients who were identified via a contact registry (i.e., registry linked to a consent to re-contact program). Patients who met the study criteria were identified via the contact registry and targeted for recruitment. In condition 1, patients established in the university hepatology specialty clinics were contacted one time via phone call by the study coordinator and asked to participate (C1). In condition 2, non-established specialty clinic patients were mailed an IRB-approved letter with study information and instructions for calling the study coordinator to participate (C2). Condition 2A included patients who called within two weeks of receiving the letter (C2A); condition 2B included patients who did not call after receiving the letter but were subsequently contacted via phone call. A registry identified 1,060 patients, of which 661were eligible and targeted for recruiting. All 37 patients were reached in C1 and 17 (45.9%) were recruited. Nineteen of the 624 patients in C2A were reached and 10 were recruited whereas 120 of the 605 patients in C2B were reached and 53 (8.7%) were recruited. Seventy patients enrolled with C2B being the most effective (total, cost) recruitment strategy ( n = 50) ( p recruiting.

Development and Evaluation of an Implementation Strategy for Collecting Data in a National Registry and the Use of Patient-Reported Outcome Measures in Physical Therapist Practices: Quality Improvement Study.

Science.gov (United States)

Meerhoff, Guus A; van Dulmen, Simone A; Maas, Marjo J M; Heijblom, Karin; Nijhuis-van der Sanden, Maria W G; Van der Wees, Philip J

2017-08-01

In 2013, the Royal Dutch Society for Physical Therapy launched the program "Quality in Motion." This program aims to collect data from electronic health record systems in a registry that is fed back to physical therapists, facilitating quality improvement. The purpose of this study was to describe the development of an implementation strategy for the program and to evaluate the feasibility of building a registry and implementing patient-reported outcome measures (PROMs) in physical therapist practices. A stepwise approach using mixed methods was established in 3 consecutive pilots with 355 physical therapists from 66 practices. Interim results were evaluated using quantitative data from a self-assessment questionnaire and the registry and qualitative data from 21 semistructured interviews with physical therapists. Descriptive statistics and McNemar's symmetry chi-squared test were used to summarize the feasibility of implementing PROMs. PROMs were selected for the 5 most prevalent musculoskeletal conditions in Dutch physical therapist practices. A core component of the implementation strategy was the introduction of knowledge brokers to support physical therapists in establishing the routine use of PROMs in clinical practice and to assist in executing peer assessment workshops. In February 2013, 30.3% of the physical therapist practices delivered 4.4 completed treatment episodes per physical therapist to the registry; this increased to 92.4% in November 2014, delivering 54.1 completed patient episodes per physical therapist. Pre- and posttreatment PROM use increased from 12.2% to 39.5%. It is unclear if the participating physical therapists reflect a representative sample of Dutch therapists. Building a registry and implementing PROMs in physical therapist practices are feasible. The routine use of PROMs needs to increase to ensure valid feedback of outcomes. Using knowledge brokers is promising for implementing the program via peer assessment workshops. © 2017

Motives for sports participation as predictions of self-reported outcomes after anterior cruciate ligament injury of the knee

DEFF Research Database (Denmark)

Roessler, K K; Andersen, Tonny Elmose; Lohmander, S

2015-01-01

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...

Self-Injurious Behavior and Functional Analysis: Where Are the Descriptions of Participant Protections?

Science.gov (United States)

Weeden, Marc; Mahoney, Amanda; Poling, Alan

2010-01-01

This study examined the reporting of participant protections in studies involving functional analysis and self-injurious behavior and published from 1994 through 2008. Results indicated that session termination criteria were rarely reported and other specific participant safeguards were seldom described. The absence of such information in no way…

Evaluation of metrics and baselines for tracking greenhouse gas emissions trends: Recommendations for the California climate action registry

Energy Technology Data Exchange (ETDEWEB)

Price, Lynn; Murtishaw, Scott; Worrell, Ernst

2003-06-01

Executive Summary: The California Climate Action Registry, which was initially established in 2000 and began operation in Fall 2002, is a voluntary registry for recording annual greenhouse gas (GHG) emissions. The purpose of the Registry is to assist California businesses and organizations in their efforts to inventory and document emissions in order to establish a baseline and to document early actions to increase energy efficiency and decrease GHG emissions. The State of California has committed to use its ''best efforts'' to ensure that entities that establish GHG emissions baselines and register their emissions will receive ''appropriate consideration under any future international, federal, or state regulatory scheme relating to greenhouse gas emissions.'' Reporting of GHG emissions involves documentation of both ''direct'' emissions from sources that are under the entity's control and indirect emissions controlled by others. Electricity generated by an off-site power source is consider ed to be an indirect GHG emission and is required to be included in the entity's report. Registry participants include businesses, non-profit organizations, municipalities, state agencies, and other entities. Participants are required to register the GHG emissions of all operations in California, and are encouraged to report nationwide. For the first three years of participation, the Registry only requires the reporting of carbon dioxide (CO2) emissions, although participants are encouraged to report the remaining five Kyoto Protocol GHGs (CH4, N2O, HFCs, PFCs, and SF6). After three years, reporting of all six Kyoto GHG emissions is required. The enabling legislation for the Registry (SB 527) requires total GHG emissions to be registered and requires reporting of ''industry-specific metrics'' once such metrics have been adopted by the Registry. The Ernest Orlando Lawrence Berkeley National

The National Mental Health Registry (NMHR).

Science.gov (United States)

Aziz, A A; Salina, A A; Abdul Kadir, A B; Badiah, Y; Cheah, Y C; Nor Hayati, A; Ruzanna, Z Z; Sharifah Suziah, S M; Chee, K Y

2008-09-01

The National Mental Health Registry (NMHR) collects information about patients with mental disorder in Malaysia. This information allows us to estimate the incidence of selected mental disorders, and to evaluate risk factors and treatment in the country. The National Mental Health Registry (NMHR) presented its first report in 2004, a year after its establishment. The report focused on schizophrenia as a pioneer project for the National Mental Health Registry. The development of the registry has progressed with data collected from government-based facilities, the academia and the private sector. The 2003-2005 report was recently published and distributed. Since then the registry has progressed to include suicides and other mental illnesses such as depression. The NMHR Report 2003-2005 provides detailed information about the profile of persons with Schizophrenia who presented for the first time to various psychiatry and mental health providers throughout Malaysia. More detailed description regarding pharmacotherapy is reported and few cross tabulations done in an effort to provide better understanding and more clinically meaningful reports.

Demographics of US pediatric contact dermatitis registry providers.

Science.gov (United States)

Goldenberg, Alina; Jacob, Sharon E

2015-01-01

Children are as likely as adults to be sensitized and reactive to contact allergens. However, the prevailing data on pediatric allergic contact dermatitis are quantitatively and qualitatively limited because of a narrow geographic localization of data-reporting providers. The aim of the study was to present the first quarter results from the Loma Linda Pediatric Contact Dermatitis Registry focused on registered providers who self-identified as providing care for pediatric allergic contact dermatitis (ACD) within the United States. The US providers were invited to join the registry via completion of an online, secure, 11-question registration survey addressing demographics and clinical practice essentials. The presented results reflect data gathered within the first quarter of registry recruitment; registration is ongoing. Of 169 responders from 48 states, the majority of providers were female (60.4%), academic (55.6%), and dermatologists (76.3%). Based on individual provider averages, the minimum cumulative number of pediatric patch-test evaluations performed each year ranged between 1372 and 3468 children. The Pediatric Contact Dermatitis Registry provides a description of the current leaders in the realm of pediatric ACD and gaps, which are in need of attention. The registry allows for a collaborative effort to exchange information, educate providers, and foster investigative research with the hope of legislation that can reduce the disease burden of ACD in US children.

Representativeness of two sampling procedures for an internet intervention targeting cancer-related distress: a comparison of convenience and registry samples.

Science.gov (United States)

Owen, Jason E; Bantum, Erin O'Carroll; Criswell, Kevin; Bazzo, Julie; Gorlick, Amanda; Stanton, Annette L

2014-08-01

Internet interventions often rely on convenience sampling, yet convenience samples may differ in important ways from systematic recruitment approaches. The purpose of this study was to evaluate potential demographic, medical, and psychosocial differences between Internet-recruited and registry-recruited cancer survivors in an Internet-based intervention. Participants were recruited from a cancer registry (n = 80) and via broad Internet outreach efforts (n = 160). Participants completed a set of self-report questionnaires, and both samples were compared to a population-based sample of cancer survivors (n = 5,150). The Internet sample was younger, better educated, more likely to be female, had longer time since diagnosis, and had more advanced stage of disease (p's sample was over-represented by men and those with prostate or other cancer types (p's sample also exhibited lower quality of life and social support and greater mood disturbance (p's convenience and systematic samples differ has important implications for external validity and potential for dissemination of Internet-based interventions.

Associations of income with self-reported ill-health and health resources in a rural community sample of Austria.

Science.gov (United States)

Freidl, W; Stronegger, W J; Rásky, E; Neuhold, C

2001-01-01

Three levels of health indicators (1) self-reported ill-health, (2) internal health resources, and (3) external health resources were analysed in relation to a four-category house-hold income distribution in order to describe possible social gradients. The particular aim of this study was to obtain information on the association of income data with self-reported ill-health. This cross-sectional study was based on a health survey. The sample represents around 10% of the rural population of some communities in Styria, randomly selected from the population registry. Interview data was collected from 3781 participants aged 15 years and older, 1559 males and 2222 females. The results show that individuals from lower house-hold income classes are disadvantaged with regard to indicators of ill-health, internal and external health resources. Overall, the link between low income and poor health is highly consistent within our data. Considering our results we conclude that internal and external health resources are as unequally distributed over income levels as health outcome indicators.

The Toxicology Investigators Consortium Case Registry--the 2014 Experience.

Science.gov (United States)

Rhyee, Sean H; Farrugia, Lynn; Campleman, Sharan L; Wax, Paul M; Brent, Jeffrey

2015-12-01

The Toxicology Investigators Consortium (ToxIC) Case Registry was established in 2010 by the American College of Medical Toxicology. The Registry includes all medical toxicology consultations performed at participating sites. The Registry was queried for all cases entered between January 1 and December 31, 2014. Specific data reviewed for analysis included demographics (age, gender, ethnicity), source of consultation, reasons for consultation, agents involved in toxicological exposures, signs, symptoms, clinical findings, fatalities, and treatment. In 2014, 9172 cases were entered in the Registry across 47 active member sites. Females accounted for 51.1 % of cases. The majority (65.1 %) of cases were adults between the ages of 19 and 65. Caucasians made up the largest identified ethnic group (48.9 %). Most Registry cases originated from the inpatient setting (93.5 %), with a large majority of these consultations coming from the emergency department or inpatient admission services. Intentional and unintentional pharmaceutical exposures continued to be the most frequent reasons for consultation, accounting for 61.7 % of cases. Among cases of intentional pharmaceutical exposure, 62.4 % were associated with a self-harm attempt. Non-pharmaceutical exposures accounted for 14.1 % of Registry cases. Similar to the past years, non-opioid analgesics, sedative-hypnotics, and opioids were the most commonly encountered agents. Clinical signs or symptoms were noted in 81.9 % of cases. There were 89 recorded fatalities (0.97 %). Medical treatment (e.g., antidotes, antivenom, chelators, supportive care) was rendered in 62.3 % of cases. Patient demographics and exposure characteristics in 2014 Registry cases remain similar to prior years. The majority of consultations arose in the acute care setting (emergency department or inpatient) and involved exposures to pharmaceutical products. Among exposures, non-opioid analgesics, sedative/hypnotics, and opioids were the most frequently

Testing and development of an instrument for self-report of participation and related environmental factors - Your Ideas about Participation and Environment (YIPE) among adults with brain injury.

Science.gov (United States)

Hawley, Rachael; Madden, Rosamond H; Brentnall, Jennie; Serratore, Deborah; Grant, Samantha; Luft, Inbal; Bundy, Anita

2016-11-01

To examine the usability of the self-report instrument, Your Ideas about Participation and Environment (YIPE), among adults with a brain injury by exploring the value and acceptability of the instrument. A qualitative descriptive research design was used for the purpose of testing and developing the YIPE for use among adults with a brain injury. The study involved administering the YIPE followed by in-depth interviewing about the experience of taking the instrument with seven adults with a brain injury, recruited through a community-based support service organization. A descriptive thematic approach was used to analyse the content of the interview data, categorize common ideas and identify areas for improvement within the instrument. Participants were generally positive about the importance of the participation and environment topics and willing to engage in self report. The YIPE (2012), resulting from changes made to the language and structure, was found to be more useable, valued and accepted by these participants than the previous version, YIPE (2011). The YIPE was found to be a useful tool among study participants. The YIPE topics were found to have importance and relevance when considering participants' satisfaction with areas of life and aspects of environment requiring change. More development of the tool is required in terms of the wording, format and method of administration to improve the overall usability of the instrument. Implications for Rehabilitation The preliminary results from this small sample study illustrated that people with brain injury were able to use an International Classification of Functioning, Disability and Health-based tool, and confirmed the importance of considering both participation and the environment together. People with cognitive impairments associated with brain injury reported on areas of everyday life where they were satisfied or dissatisfied. They related their satisfaction to environmental factors that were facilitators

Self-Concept and Sport Participation in Sixth Grade Basic School Students

Directory of Open Access Journals (Sweden)

Špela Virag

2016-04-01

Full Text Available The purpose of the study was to examine self-concept in relation to sport participation among basic school children. The sample included 109 sixth grade students of different Slovenian basic schools. The participants completed the Slovenian version of the SelfPerception Profile for Children – SPPC. The results show significant gender differences in some specific components of self-concept. Boys exhibited higher scores in perceived physical appearance and athletic competence, whereas girls exhibited higher levels in perceived behavioural conduct. Mean values show that students, engaged in organized sport practice, reported higher scores in all self-concept subscales than their inactive peers, although significant differences between these two groups were found in perceived scholastic competence and athletic competence. The study offers a detailed insight into the multidimensional self-perceptions of sixth grade basic school students. The results highlight the importance of physical/sports activity in the self-concept development and can be useful in promoting an active lifestyle among youth.

Sleep Characteristics of Self-Reported Long Sleepers

Science.gov (United States)

Patel, Sanjay R.; Blackwell, Terri; Ancoli-Israel, Sonia; Stone, Katie L.

2012-01-01

Background: Self-reported long habitual sleep durations (≥ 9 h per night) consistently predict increased mortality. We compared objective sleep parameters of self-reported long versus normal duration sleepers to determine whether long sleepers truly sleep more or have an underlying sleep abnormality. Methods: Older men participating in the Osteoporotic Fractures in Men Study (MrOS) were recruited for a comprehensive sleep assessment, which included wrist actigraphy, overnight polysomnography (PSG), and a question about usual nocturnal sleep duration. Results: Of the 3134 participants (mean age 76.4 ± 5.6; 89.9% Caucasian), 1888 (60.2%) reported sleeping 7-8 h (normal sleepers) and 174 (5.6%) reported ≥ 9 h (long sleepers). On actigraphy, long sleepers spent on average 63.0 min more per night in bed (P sleep stage distribution did not differ. After adjusting for differences in demographics, comorbidities, and medication usage, self-reported long sleepers continued to spend more time in bed and sleep more, based on both actigraphy and PSG. Each additional 30 min in bed or asleep as measured by actigraphy increased the odds of being a self-reported long-sleeper 1.74-fold and 1.33-fold, respectively (P sleep disorders. Citation: Patel SR; Blackwell T; Ancoli-Israel S; Stone KL. Sleep characteristics of self-reported long sleepers. SLEEP 2012;35(5):641-648. PMID:22547890

The EuroMyositis registry

DEFF Research Database (Denmark)

Lilleker, James B; Vencovsky, Jiri; Wang, Guochun

2018-01-01

AIMS: The EuroMyositis Registry facilitates collaboration across the idiopathic inflammatory myopathy (IIM) research community. This inaugural report examines pooled Registry data. METHODS: Cross-sectional analysis of IIM cases from 11 countries was performed. Associations between clinical subtyp...

Danish Hip Arthroscopy Registry

DEFF Research Database (Denmark)

Mygind-Klavsen, Bjarne; Grønbech Nielsen, Torsten; Maagaard, Niels

2016-01-01

Danish Hip Arthroscopy Registry (DHAR) was initiated in 2012 as a web-based prospective registry. The purpose of this study was to evaluate and report the epidemiologic and perioperative data of the first 2000 procedures in a Danish hip arthroscopy population and to describe the development of DHAR...... was 0.65 and HAGOS sub-scores were 51 (pain), 49 (symptoms), 53 (ADL), 35 (sport), 20 (physical activity) and 29, respectively. We conclude that patients undergoing hip arthroscopy report considerable pain, loss of function, reduced level of activity and reduced quality-of-life prior to surgery....... The problems with development and maintaining a large clinical registry are described and further studies are needed to validate data completeness. We consider the development of a national clinical registry for hip arthroscopy as a successful way of developing and maintaining a valuable clinical...

Co-Care: A Registry for Individuals at Increased Risk for Colorectal Cancer.

Science.gov (United States)

Sperling, Dylan; Jandorf, Lina; Sriphanlop, Pathu; Martinez, Clarissa; Brown, Karen L; Soper, Emily R; Hiraki, Susan; Itzkowitz, Steven H

2017-01-01

INTRODUCTION: Colorectal cancer (CRC) is one of the leading causes of cancer death for both men and women in the United States. Several factors can increase one’s risk of CRC, including a personal or family history of CRC, a diagnosis or family history of a hereditary colon cancer syndrome, or a diagnosis of chronic inflammatory bowel disease. The purpose of this project was to create a colorectal cancer registry (Co-Care) for individuals with a personal or family history of CRC, and those with disorders of the colon or rectum that are associated with an increased risk for developing CRC. Methods: To be eligible for the registry, patients either had a personal or family history of CRC, a diagnosis or family history of Lynch syndrome, familial adenomatous polyposis, or a diagnosis of Crohn’s colitis or ulcerative colitis with dysplasia. Participants were recruited after seeing their gastroenterologist or genetic counselor, or after undergoing a full or partial colectomy at Mount Sinai Hospital in New York City. Eligible patients who agreed to participate were interviewed by a member of the research staff and asked a wide range of questions pertaining to CRC risk. RESULTS: A total of 224 patients were enrolled in the registry. Participants are mostly white, born in the United States, and married, with a bachelor’s or graduate degree, reporting an annual household income of $100,000 or more. The largest portion have a family history of CRC (27.2%), and almost half of participants are of Jewish descent (46.2%) and have undergone full or partial colectomy (48.2%). More than half of participants have neither received genetic counseling (54.5%) nor undergone genetic testing (59.7%). Only 3.6% report that they currently smoke cigarettes, and 41.1% consume alcohol at least once per week. Lastly, 18.3%, 10.3%, and 27.7% of participants report that they currently take aspirin, folic acid/folate pills or tablets, or calcium pills/tablets, respectively. CONCLUSIONS: This

Clinical outcomes with the STENTYS self-apposing coronary stent in patients presenting with ST-segment elevation myocardial infarction: two-year insights from the APPOSITION III (A Post-Market registry to assess the STENTYS self-exPanding COronary Stent In AcuTe MyocardIal InfarctiON) registry.

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Lu, Huangling; Grundeken, Maik J; Vos, Nicola S; IJsselmuiden, Alexander J J; van Geuns, Robert-Jan; Wessely, Rainer; Dengler, Thomas; La Manna, Alessio; Silvain, Johanne; Montalescot, Gilles; Spaargaren, René; Tijssen, Jan G P; Amoroso, Giovanni; de Winter, Robbert J; Koch, Karel T

2017-08-04

The APPOSITION III registry evaluated the feasibility and performance of the STENTYS self-apposing stent in an ST-segment elevation myocardial infarction (STEMI) population. This novel self-apposing stent device lowers stent strut malapposition rates and therefore carries the potential to prevent stent undersizing during primary percutaneous coronary intervention (PCI) in STEMI patients. To date, no long-term data are available using this device in the setting of STEMI. We aimed to evaluate the long-term clinical outcomes of the APPOSITION III registry. This was an international, prospective, multicentre post-marketing registry. The study population consisted of 965 STEMI patients. The primary endpoint, major adverse cardiac events (MACE), was defined as the composite of cardiac death, recurrent target vessel myocardial infarction (TV-MI), and clinically driven target lesion revascularisation (CD-TLR). At two years, MACE occurred in 11.2%, cardiac death occurred in 2.3%, TV-MI occurred in 2.3% and CD-TLR in 9.2% of patients. The two-year definite stent thrombosis (ST) rate was 3.3%. Incremental event rates between one- and two-year follow-up were 1.0% for TV-MI, 1.8% for CD-TLR, and 0.5% for definite ST. Post-dilation resulted in significantly reduced CD-TLR and ST rates at 30-day landmark analyses. Results were equivalent between the BMS and PES STENTYS subgroups. This registry revealed low rates of adverse events at two-year follow-up, with an incremental ST rate as low as 0.5% in the second year, demonstrating that the self-apposing technique is feasible in STEMI patients on long-term follow-up while using post-dilatation.

Patient-reported outcome measures in arthroplasty registries

DEFF Research Database (Denmark)

Rolfson, Ola; Eresian Chenok, Kate; Bohm, Eric

2016-01-01

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...

Feasibility of establishing an Australian ACL registry: a pilot study by the Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR).

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Lekkas, Christina; Clarnette, Richard; Graves, Stephen E; Rainbird, Sophia; Parker, David; Lorimer, Michelle; Paterson, Roger; Roe, Justin; Morris, Hayden; Feller, Julian A; Annear, Peter; Forster, Ben; Hayes, David

2017-05-01

Rupture of the anterior cruciate ligament (ACL) is a common and debilitating injury that impacts significantly on knee function and risks the development of degenerative arthritis. The outcome of ACL surgery is not monitored in Australia. The optimal treatment is unknown. Consequently, the identification of best practice in treating ACL is crucial to the development of improved outcomes. The Australian Knee Society (AKS) asked the Australian Orthopaedic Association (AOA) to consider establishing a national ACL registry. As a first step, a pilot study was undertaken by the Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR) to test the hypothesis that collecting the required information in the Australian setting was possible. Surgeons completed an operative form which provided comprehensive information on the surgery undertaken. Patients provided pre- and post-operative questionnaires including the Knee Injury and Osteoarthritis Outcome Score (KOOS) and the Marx Activity Scale (MA Scale). The number of ACL procedures undertaken at each hospital during the recruitment period was compared against State Government Health Department separation data. A total of 802 patients were recruited from October 2011 to January 2013. The overall capture rate for surgeon-derived data was 99%, and the capture rate for the pre-operative patient questionnaire was 97.9%. At 6 months, patient-reported outcomes were obtained from 55% of patients, and 58.5% of patients at 12 months. When checked against State Government Health Department separation data, 31.3% of procedures undertaken at each study hospital were captured in the study. It is possible to collect surgeon-derived and pre-operative patient-reported data, following ACL reconstruction in Australia. The need to gain patient consent was a limiting factor to participation. When patients did consent to participate in the study, we were able to capture nearly 100% of surgical procedures. Patient consent

The incidence and repetition of hospital-treated deliberate self harm: findings from the world's first national registry.

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Ivan J Perry

Full Text Available Suicide is a significant public health issue with almost one million people dying by suicide each year worldwide. Deliberate self harm (DSH is the single most important risk factor for suicide yet few countries have reliable data on DSH. We developed a national DSH registry in the Republic of Ireland to establish the incidence of hospital-treated DSH at national level and the spectrum and pattern of presentations with DSH and repetition.Between 2003 and 2009, the Irish National Registry of Deliberate Self Harm collected data on DSH presentations to all 40 hospital emergency departments in the country. Data were collected by trained data registration officers using standard methods of case ascertainment and definition. The Registry recorded 75,119 DSH presentations involving 48,206 individuals. The total incidence rate fell from 209 (95% CI: 205-213 per 100,000 in 2003 to 184 (95% CI: 180-189 per 100,000 in 2006 and increased again to 209 (95% CI: 204-213 per 100,000 in 2009. The most notable annual changes were successive 10% increases in the male rate in 2008 and 2009. There was significant variation by age with peak rates in women in the 15-19 year age group (620 (95% CI: 605-636 per 100,000, and in men in the 20-24 age group (427 (95% CI: 416-439 per 100,000. Repetition rates varied significantly by age, method of self harm and number of previous episodes.Population-based data on hospital-treated DSH represent an important index of the burden of mental illness and suicide risk in the community. The increased DSH rate in Irish men in 2008 and 2009 coincided with the advent of the economic recession in Ireland. The findings underline the need for developing effective interventions to reduce DSH repetition rates as a key priority for health systems.

Immunization registries in the EMR Era

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Stevens, Lindsay A.; Palma, Jonathan P.; Pandher, Kiran K.; Longhurst, Christopher A.

2013-01-01

Background: The CDC established a national objective to create population-based tracking of immunizations through regional and statewide registries nearly 2 decades ago, and these registries have increased coverage rates and reduced duplicate immunizations. With increased adoption of commercial electronic medical records (EMR), some institutions have used unidirectional links to send immunization data to designated registries. However, access to these registries within a vendor EMR has not been previously reported. Purpose: To develop a visually integrated interface between an EMR and a statewide immunization registry at a previously non-reporting hospital, and to assess subsequent changes in provider use and satisfaction. Methods: A group of healthcare providers were surveyed before and after implementation of the new interface. The surveys addressed access of the California Immunization Registry (CAIR), and satisfaction with the availability of immunization information. Information Technology (IT) teams developed a “smart-link” within the electronic patient chart that provides a single-click interface for visual integration of data within the CAIR database. Results: Use of the tool has increased in the months since its initiation, and over 20,000 new immunizations have been exported successfully to CAIR since the hospital began sharing data with the registry. Survey data suggest that providers find this tool improves workflow and overall satisfaction with availability of immunization data. (p=0.009). Conclusions: Visual integration of external registries into a vendor EMR system is feasible and improves provider satisfaction and registry reporting. PMID:23923096

Convergence of self-report scales and Rorschach indexes of psychological distress: the moderating role of self-disclosure.

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Berant, Ety; Newborn, Michal; Orgler, Smadar

2008-01-01

In this study, we addressed the weak associations found in research between self-report measures and the Rorschach test (Exner, 1978, 1991), from the perspective of Bornstein's (2002) "process dissociation framework." Specifically, in the study, we focused on the associations between self-report measures of psychological distress and their corresponding Rorschach indexes while inspecting the moderating role of self-disclosure. A total of 59, nonpatient Israeli adults participated in a 2-session study. In the first session, they completed self-report scales measuring self-disclosure and psychological distress (suicidality, depression, and loneliness). In the second session, the Rorschach test was administered and coded. The participants were divided into high and low self-disclosure groups. A convergence between self-report and Rorschach measures of psychological distress was found only among high self-disclosers. In the discussion, we address the theoretical and clinical implications of these findings.

Participant characteristics associated with errors in self-reported energy intake from the Women's Health Initiative food-frequency questionnaire.

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Horner, Neilann K; Patterson, Ruth E; Neuhouser, Marian L; Lampe, Johanna W; Beresford, Shirley A; Prentice, Ross L

2002-10-01

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.

What distinguishes weight loss maintainers of the German Weight Control Registry from the general population?

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Feller, Silke; Müller, Astrid; Mayr, Andreas; Engeli, Stefan; Hilbert, Anja; de Zwaan, Martina

2015-05-01

Differences between successful long-term weight loss maintainers and the general population with regard to eating and weighing habits, non-normative eating behaviors, and eating-related and general psychopathological parameters are unknown. Self-identified weight loss maintainers from the German Weight Control Registry (GWCR, n = 494) were compared with a representative sample of the general German population (n = 2,129). The samples did not differ in current BMI. Using the same assessment instruments in both cohorts, a variety of eating-related and psychological variables were determined. The GWCR participants reported more self-weighing and higher eating frequency but less hot meal consumption and more eating-out-of-home. Binge eating, compensatory behaviors, and concerns about shape and weight were reported more often by successful weight loss maintainers. Scores of depression and worrying about health were slightly higher whereas severity of somatic symptoms was less pronounced in the GWCR participants. Overall, our data suggest that successful weight loss maintainers are characterized by more concerns about shape and weight, greater binge eating frequency, and higher use of compensatory behaviors. The latter suggests that weight loss maintenance might not only be achieved by healthy strategies but also by non-normative behaviors which might increase the vulnerability for weight regain. © 2015 The Obesity Society.

Self-Reported Sleep Duration and Self-Rated Health in Young Adults.

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Štefan, Lovro; Juranko, Dora; Prosoli, Rebeka; Barić, Renata; Sporiš, Goran

2017-07-15

This study aimed to determine the associations between the self-reported sleep duration and self-rated health in young adults. In this cross-sectional study, participants were 689 young adults (mean age 20 ± 1.35 years, 49.8% female). Sleep duration and self-rated health, as the main outcome of interest, were measured as self-reported. As potential covariates, we included sex, age, smoking status, alcohol consumption, physical activity, sedentary behavior, psychological distress, and body mass index. Approximately 30% of participants slept 7-8 hours, 17.4% were short sleepers (categories 10 hours of sleep). In an unadjusted model, compared with the reference category (7-8 hours of sleep), those who slept health. In an adjusted model, short (sleep (> 10 hours) were both associated with poor self-rated health. Our results suggest that both short ( 10 hours) sleepers have lower odds of having good self-rated health after adjusting for potential covariates. Health professionals should pay more attention to young adults, who have both short and long period of sleep, in order to prevent health problems and potential acute or chronic diseases. © 2017 American Academy of Sleep Medicine

Comparing the Effectiveness of a Clinical Registry and a Clinical Data Warehouse for Supporting Clinical Trial Recruitment: A Case Study

Science.gov (United States)

Weng, Chunhua; Bigger, J Thomas; Busacca, Linda; Wilcox, Adam; Getaneh, Asqual

2010-01-01

This paper reports a case study comparing the relative efficiency of using a Diabetes Registry or a Clinical Data Warehouse to recruit participants for a diabetes clinical trial, TECOS. The Clinical Data Warehouse generated higher positive predictive accuracy (31% vs. 6.6%) and higher participant recruitment than the Registry (30 vs. 14 participants) in a shorter time period (59 vs. 74 working days). We identify important factors that increase clinical trial recruitment efficiency and lower cost. PMID:21347102

Dental patients' self-reports of xerostomia and associated risk factors.

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Villa, Alessandro; Polimeni, Antonella; Strohmenger, Laura; Cicciù, Domenico; Gherlone, Enrico; Abati, Silvio

2011-07-01

Most studies regarding xerostomia focus on elderly people. Therefore, the authors conducted a study of dental patients 18 years or older to determine the prevalence of self-reported xerostomia and associated risk factors. The authors sent a total of 2,200 questionnaires to four dental clinics to assess patients' self-reported xerostomia. They also collected sociodemographic data and information regarding personal behavior. They used logistic regression models to estimate odds ratios (OR) and 95 percent confidence intervals (CI) to explore the relationship between self-reported xerostomia and risk factors that reasonably might be expected to be associated with self-reported xerostomia. The overall prevalence of xerostomia in participants was 7 percent. Participants with burning-mouth sensations were associated with having higher odds of experiencing dry mouth (OR, 2.1; 95 percent CI, 0.9-5.2). Participants 51 years or older were significantly more likely to report having dry mouth than were younger participants (P xerostomia increased with increasing numbers of medications patients reported using. The authors found that medication use and age were highly significant risk factors for dental patients reporting xerostomia. Clinicians should interview their patients carefully regarding their use of medications and provide proper oral health care to improve xerostomia resulting from medication use.

Registries in European post-marketing surveillance

DEFF Research Database (Denmark)

Bouvy, Jacoline C; Blake, Kevin; Slattery, Jim

2017-01-01

at gaining further insight into the European Medicines Agency's (EMA) requests for new registries and registry studies using existing registries and to review the experience gained in their conduct. METHODS: European Public Assessment Reports were consulted to identify products for which a request...

Verification of Parent-Report of Child Autism Spectrum Disorder Diagnosis to a Web-Based Autism Registry

Science.gov (United States)

Daniels, Amy M.; Rosenberg, Rebecca E.; Anderson, Connie; Law, J. Kiely; Marvin, Alison R.; Law, Paul A.

2012-01-01

Growing interest in autism spectrum disorder (ASD) research requires increasingly large samples to uncover epidemiologic trends; such a large dataset is available in a national, web-based autism registry, the Interactive Autism Network (IAN). The objective of this study was to verify parent-report of professional ASD diagnosis to the registry's…

Self-care self-efficacy, religious participation and depression as predictors of poststroke self-care among underserved ethnic minorities

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Suzanne M. Robertson

2013-04-01

Full Text Available Underserved ethnic minorities have multiple chronic disease risk factors, including tobacco, alcohol and substance use, which contribute to increased incidence of stroke. Self-efficacy (self-care self-efficacy, religious participation and depression may directly and indirectly influence engagement in post stroke self-care behaviors. The primary aim of the present study was to investigate the effects of self-care self-efficacy, religious participation and depression, on tobacco, alcohol and substance use in a sample of largely ethnic minority, underserved stroke survivors (n=52. Participants previously recruited for a culturally tailored secondary stroke prevention self-care intervention were included. The treatment group received three stroke self-care sessions. The usual care group completed assessments only. Both groups were included in these analyses. Main outcome measures included tobacco, alcohol and substance use. Self-care self-efficacy, religious participation and depression were also assessed. Logistic regression analyses, using self-efficacy, religious practice and depression as the referents, were used to predict binary outcomes of tobacco, alcohol and substance use at 4-weeks post-stroke. Higher depression and self-care self-efficacy were associated with reduced odds of smoking and substance use. Greater participation in religious activities was associated with lower odds of alcohol use. We can conclude that incorporating depression treatment and techniques to increase self-care self-efficacy, and encouraging religious participation may help to improve stroke self-care behaviors for underserved and low socioeconomic status individuals. Results are discussed in the context of stroke self-management.

Changes in self-reported and parent-reported health-related quality of life in overweight children and adolescents participating in an outpatient training: findings from a 12-month follow-up study

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Finne Emily

2013-01-01

Full Text Available Abstract Background Health-related quality of life (HRQoL was found to improve in participants of weight management interventions. However, information on moderately overweight youth as well as on maintaining HRQoL improvements following treatment is sparse. We studied the HRQoL of 74 overweight, but not obese participants (32.4% male, mean age = 11.61 ± 1.70 SD of a comprehensive and effective six-month outpatient training at four time-points up to 12 months after end of treatment. Methods HRQoL was measured by self-report and proxy-report versions of the generic German KINDL-R, including six sub domains, and an obesity-specific additional module. Changes in original and z-standardized scores were analyzed by (2×4 doubly multivariate analysis of variance. This was done separately for self- and proxy-reported HRQoL, taking into account further socio-demographic background variables and social desirability. Additionally, correlations between changes in HRQoL scores and changes in zBMI were examined. Results There were significant multivariate time effects for self-reported and proxy-reported HRQoL and a significant time-gender interaction in self-reports revealed (p 2 = 0.14-0.19. Generic HRQoL further increased after end of treatment. The largest effects were found on the dimension self-esteem (partial η2 = 0.08-0.09 for proxy- and self-reported z-scores, respectively. Correlations with changes in weight were gender-specific, and weight reduction was only associated with HRQoL improvements in girls. Conclusions Positive effects of outpatient training on generic and weight-specific HRQoL of moderately overweight (not obese children and adolescents could be demonstrated. Improvements in HRQoL were not consistently bound to weight reduction. While changes in weight-specific HRQoL were more immediate, generic HRQoL further increased after treatment ended. An extended follow-up may therefore be needed to scrutinize HRQo

Motives for sports participation as predictions of self-reported outcomes after anterior cruciate ligament injury of the knee.

Science.gov (United States)

Roessler, K K; Andersen, T E; Lohmander, S; Roos, E M

2015-06-01

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.

Clinical Case Registries: Simultaneous Local and National Disease Registries for Population Quality Management

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Backus, Lisa I.; Gavrilov, Sergey; Loomis, Timothy P.; Halloran, James P.; Phillips, Barbara R.; Belperio, Pamela S.; Mole, Larry A.

2009-01-01

The Department of Veterans Affairs (VA) has a system-wide, patient-centric electronic medical record system (EMR) within which the authors developed the Clinical Case Registries (CCR) to support population-centric delivery and evaluation of VA medical care. To date, the authors have applied the CCR to populations with human immunodeficiency virus (HIV) and hepatitis C virus (HCV). Local components use diagnosis codes and laboratory test results to identify patients who may have HIV or HCV and support queries on local care delivery with customizable reports. For each patient in a local registry, key EMR data are transferred via HL7 messaging to a single national registry. From 128 local registry systems, over 60,000 and 320,000 veterans in VA care have been identified as having HIV and HCV, respectively, and entered in the national database. Local and national reports covering demographics, resource usage, quality of care metrics and medication safety issues have been generated. PMID:19717794

"Pushing the Boundaries": Participant Motivation and Self-Reported Benefits of Short-Term International Study Tours

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Bretag, Tracey; van der Veen, Robert

2017-01-01

Short-term overseas study tours serve as a means of developing students' global competencies. The authors conducted pre-departure and post-return focus groups with three groups of students at an Australian university who had participated in short-term study tours to Asia to explore their motivations for participating and their self-reported…

Workload and time management in central cancer registries: baseline data and implication for registry staffing.

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Chapman, Susan A; Mulvihill, Linda; Herrera, Carolina

2012-01-01

The Workload and Time Management Survey of Central Cancer Registries was conducted in 2011 to assess the amount of time spent on work activities usually performed by cancer registrars. A survey including 39 multi-item questions,together with a work activities data collection log, was sent by email to the central cancer registry (CCR) manager in each of the 50 states and the District of Columbia. Twenty-four central cancer registries (47%) responded to the survey.Results indicate that registries faced reductions in budgeted staffing from 2008-2009. The number of source records and total cases were important indicators of workload. Four core activities, including abstracting at the registry, visual editing,case consolidation, and resolving edit reports, accounted for about half of registry workload. We estimate an average of 12.4 full-time equivalents (FTEs) are required to perform all cancer registration activities tracked by the survey; however,estimates vary widely by registry size. These findings may be useful for registries as a benchmark for their own registry workload and time-management data and to develop staffing guidelines.

The long term effects of early analysis of a trauma registry

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Ashour Mazen

2009-01-01

Full Text Available Abstract Background We established a trauma registry in 2003 to collect data on trauma patients, which is a major cause of death in the United Arab Emirates (UAE. The aim of this paper is to report on the long term effects of our early analysis of this registry. Methods Data in the early stages of this trauma registry were collected for 503 patients during a period of 6 months in 2003. Data was collected on a paper form and then entered into the trauma registry using a self-developed Access database. Descriptive analysis was performed. Results Most were males (87%, the mean age (SD was 30.5 (14.9. UAE citizens formed 18.5%. Road traffic collisions caused an overwhelming 34.2% of injuries with 29.7% of those involving UAE citizens while work-related injuries were 26.2%. The early analysis of this registry had two major impacts. Firstly, the alarmingly high rate of UAE nationals in road traffic collisions standardized to the population led to major concerns and to the development of a specialized road traffic collision registry three years later. Second, the equally alarming high rate of work-related injuries led to collaboration with a Preventive Medicine team who helped with refining data elements of the trauma registry to include data important for research in trauma prevention. Conclusion Analysis of a trauma registry as early as six months can lead to useful information which has long term effects on the progress of trauma research and prevention.

Oral cancer statistics in India on the basis of first report of 29 population-based cancer registries

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Sharma, Swati; Satyanarayana, L; Asthana, Smitha; Shivalingesh, KK; Goutham, Bala Subramanya; Ramachandra, Sujatha

2018-01-01

Objectives: To summarize and provide an overview of age-specific oral cancer incidence reported in 29 population-based cancer registry in India. Materials and Methods: Secondary data on age-adjusted rates (AARs) of incidence of oral cancer and other associated sites for all ages (0–75 years) were collected from the report of the National Cancer Registry Programme 2012–2014 in 29 population-based control registries. Results: Among both males and females, mouth cancer had maximum Age adjusted incidence rates (64.8) in the central zone, while oropharynx cancer had minimum AAR (0) in all regions. Conclusion: Oral cancer incidence increases with age with typical pattern of cancer of associated sites of oral cavity seen in the northeast region. PMID:29731552

The prevalence of self-reported deliberate self harm in Irish adolescents.

LENUS (Irish Health Repository)

Morey, Carolyn

2008-01-01

BACKGROUND: Deliberate self harm is major public health problem, in particular among young people. Although several studies have addressed the prevalence of deliberate self harm among young people in the community, little is known about the extent to which deliberate self harm comes to the attention of medical services, the self harm methods used and the underlying motives. The aim of this study was to determine the prevalence of deliberate self harm in adolescents and the methods, motives and help seeking behaviour associated with this behaviour. METHODS: A cross-sectional survey using an anonymous self-report questionnaire was administered in 39 schools in the Southern area of the Health Service Executive, Ireland. Of the 4,583 adolescents aged 15-17 years who were invited to participate in the survey, 3,881 adolescents took part (response: 85%). RESULTS: A lifetime history of DSH was reported by 9.1% (n = 333) of the adolescents. DSH was more common among females (13.9%) than males (4.3%). Self cutting (66.0%) and overdose (35.2%) were the most common DSH methods. A minority of participants accessed medical services after engaging in DSH (15.3%). CONCLUSION: DSH is a significant problem in Irish adolescents and the vast majority do not come to the attention of health services. Innovative solutions for prevention and intervention are required to tackle DSH in adolescents.

Primary healthcare-based diabetes registry in Puducherry: Design and methods

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Subitha Lakshminarayanan

2017-01-01

Full Text Available Background: Diabetes registries monitor the population prevalence and incidence of diabetes, monitor diabetes control program, provide information of quality of care to health service providers, and provide a sampling frame for interventional studies. This study documents the process of establishing a prospective diabetes registry in a primary health-care setting in Puducherry. Methods: This is a facility-based prospective registry conducted in six randomly selected urban health centers in Puducherry, with enrollment of all known patients with diabetes attending chronic disease clinics. Administrative approvals were obtained from Government Health Services. Manuals for training of medical officers, health-care workers, and case report forms were developed. Diabetes registry was prepared using Epi Info software. Results: In the first phase, demographic characteristics, risk factors, complications, coexisting chronic conditions, lifestyle and medical management, and clinical outcomes were recorded. Around 2177 patients with diabetes have been registered in six Primary Health Centres out of a total of 2948 participants seeking care from chronic disease clinic. Registration coverage ranges from 61% to 105% in these centers. Conclusion: This study has documented methodological details, and learning experiences gained while developing a diabetes registry at the primary health care level and the scope for upscaling to a Management Information System for Diabetes and a State-wide Registry. Improvement in patient care through needs assessment and quality assurance in service delivery is an important theme envisioned by this registry.

[Pediatric cardiovascular surgical data base registry in México. First report].

Science.gov (United States)

Cervantes-Salazar, Jorge; Calderón-Colmenero, Juan; Ramírez-Marroquín, Samuel; Palacios-Macedo, Alexis; Bolio-Cerdán, Alejandro; Vizcaíno Alarcón, Alfredo; Curi-Curi, Pedro; de la Llata, Manuel; Erdmenger-Orellana, Julio; González, Julieta; García-Soriano, Federico; Calderón, Alejandro; Casillas, Luis; Villanueva, Filiberto; Sánchez-Ramírez, Roberto; Osnaya, Héctor; Necoechea, Juan Carlos; Alva-Espinoza, Carlos; Prado-Villegas, Guillermo

2013-01-01

Current world tendency is the detection of health problems in order to offer solution alternatives by means of the development of computarized data bases. To present the results of a computerized data base developed for the registry of pediatric cardiac surgery with the support of Asociación Mexicana de Especialistas en Cardiopatías Congénitas (AMECC, A.C.). A one-year analysis (from August 1, 2011 to July 31, 2012) of a computerized data base was performed with the support of AMECC and the participation of the most important Mexican institutions for pediatric surgical heart disease health care, particularly for the uninsured population. There were 7 health institutions voluntarily incorporated to the national data base registry, and in the first year of observation, 943 surgical procedures in 880 patients and 7% re-operations (n = 63), were reported. Patients up to one-year old accounted for 38%. The most frequent types of operated congenital heart diseases were: patent ductus arteriosus (n = 96), ventricular septal defect (n = 86), tetralogy of Fallot (n = 72), atrial septal defect (n = 68), and aortic coarctation (n = 54). Elective procedures were 90%, and 62% of them were performed with the use of cardiopulmonary bypass. Overall mortality was 7.5% with the following RACHS-1 score risk distribution: 1 (n = 4.2%), 2 (n = 19.6%), 3 (n = 22.8%), 4 (n = 12.19%), 5 (n = 1.25%), 6 (n = 6.44%) and not classifiable (n = 2.9%). Although this analysis gives a representative vision of the cardiovascular surgical health care for the uninsured national pediatric population, the incorporation of other health institutions to this data base may lead us to have a most realistic overview in relation to the surgical cardiovascular health care for the up to 18 year-old population.

The Comparing Options for Management: Patient-centered Results for Uterine Fibroids (COMPARE-UF) Registry: Rationale and Design.

Science.gov (United States)

Stewart, Elizabeth A; Lytle, Barbara L; Thomas, Laine; Wegienka, Ganesa R; Jacoby, Vanessa; Diamond, Michael P; Nicholson, Wanda K; Anchan, Raymond M; Venable, Sateria; Wallace, Kedra; Marsh, Erica E; Maxwell, George L; Borah, Bijan J; Catherino, William H; Myers, Evan R

2018-05-08

To design and establish a uterine fibroid (UF) registry based in the United States (US) to provide comparative effectiveness data regarding UF treatment. We report here the design and initial recruitment for the Comparing Options for Management: Patient-centered Results for Uterine Fibroids (COMPARE-UF) registry (Clinicaltrials.gov, NCT02260752), funded by the Agency for Healthcare Research and Quality (AHRQ) in collaboration with the-Patient-Centered Outcomes Research Institute (PCORI). COMPARE-UF is designed to help answer critical questions about treatment options for women with symptomatic UF. Women undergoing a procedure for UF (hysterectomy, myomectomy [abdominal, hysteroscopic, vaginal and laparoscopic/robotic], endometrial ablation, radiofrequency fibroid ablation, uterine artery embolization, magnetic resonance guided focused ultrasound or progestin-releasing intrauterine device insertion) at one of the COMPARE-UF sites are invited to participate in a prospective registry with three years follow-up for post-procedural outcomes. Enrolled participants provide annual follow-up through an online portal or through traditional phone contact. A central data abstraction center provides information obtained from imaging, operative or procedural notes and pathology reports. Women with uterine fibroids and other stakeholders are a key part of the COMPARE-UF registry and participate at all points from study design to dissemination of results. We built a network of nine clinical sites across the US with expertise in the care of women with UF to capture geographic, racial, ethnic and procedural diversity. Of the initial 2031 women enrolled in COMPARE-UF, 42% are self-identified as Black or African-American and 40% are age 40 years or younger with 16% of participants under age 35. Women undergoing myomectomy comprise the largest treatment group at 46% of all procedures with laparoscopic or robotic myomectomy comprising the largest subset of myomectomies at 19% of all

United States Transuranium and Uranium Registries. Annual report February 1, 2001 - January 31, 2002

International Nuclear Information System (INIS)

Ehrhart, Susan M.; Filipy, Ronald E.

2002-01-01

This report documents the activities of the United States Transuranium and Uranium Registries (USTUR) from February 2001 through January 2002. Progress in continuing collaborations and several new collaborations is reviewed

United States Transuranium and Uranium Registries. Annual report February 1, 2001--January 31, 2002

Energy Technology Data Exchange (ETDEWEB)

Ehrhart, Susan M. (ed.); Filipy, Ronald E. (ed)

2002-07-01

This report documents the activities of the United States Transuranium and Uranium Registries (USTUR) from February 2001 through January 2002. Progress in continuing collaborations and several new collaborations is reviewed.

Self-Stigma and Consumer Participation in Shared Decision Making in Mental Health Services.

Science.gov (United States)

Hamann, Johannes; Bühner, Markus; Rüsch, Nicolas

2017-08-01

People with mental illness struggle with symptoms and with public stigma. Some accept common prejudices and lose self-esteem, resulting in shame and self-stigma, which may affect their interactions with mental health professionals. This study explored whether self-stigma and shame are associated with consumers' preferences for participation in medical decision making and their behavior in psychiatric consultations. In a cross-sectional study conducted in Germany, 329 individuals with a diagnosis of a schizophrenia spectrum disorder or an affective disorder and their psychiatrists provided sociodemographic and illness-related information. Self-stigma, shame, locus of control, and views about clinical decision making were assessed by self-report. Psychiatrists rated their impression of the decision-making behavior of consumers. Regression analyses and structural equation modeling were used to determine the association of self-stigma and shame with clinical decision making. Self-stigma was not related to consumers' participation preferences, but it was associated with some aspects of communicative behavior. Active and critical behavior (for example, expressing views, daring to challenge the doctor's opinion, and openly speaking out about disagreements with the doctor) was associated with less shame, less self-stigma, more self-responsibility, less attribution of external control to powerful others, and more years of education. Self-stigma and shame were associated with less participative and critical behavior, which probably leads to clinical encounters that involve less shared decision making and more paternalistic decision making. Paternalistic decision making may reinforce self-stigma and lead to poorer health outcomes. Therefore, interventions that reduce self-stigma and increase consumers' critical and participative communication may improve health outcomes.

Cancer incidence in Morocco: report from Casablanca registry 2005 ...

African Journals Online (AJOL)

Introduction: Few population-based cancer registries are in place in developing countries. In order to know the burden of cancer in Moroccan population, cancer registry initiative was put in place in the Casablanca district, the biggest city of Morocco. Methods: The data collected covers 3.6 millions inhabitant and included ...

Cost of Operating Central Cancer Registries and Factors That Affect Cost: Findings From an Economic Evaluation of Centers for Disease Control and Prevention National Program of Cancer Registries.

Science.gov (United States)

Tangka, Florence K L; Subramanian, Sujha; Beebe, Maggie Cole; Weir, Hannah K; Trebino, Diana; Babcock, Frances; Ewing, Jean

2016-01-01

The Centers for Disease Control and Prevention (CDC) evaluated the economics of the National Program of Cancer Registries to provide the CDC, the registries, and policy makers with the economics evidence-base to make optimal decisions about resource allocation. Cancer registry budgets are under increasing threat, and, therefore, systematic assessment of the cost will identify approaches to improve the efficiencies of this vital data collection operation and also justify the funding required to sustain registry operations. To estimate the cost of cancer registry operations and to assess the factors affecting the cost per case reported by National Program of Cancer Registries-funded central cancer registries. We developed a Web-based cost assessment tool to collect 3 years of data (2009-2011) from each National Program of Cancer Registries-funded registry for all actual expenditures for registry activities (including those funded by other sources) and factors affecting registry operations. We used a random-effects regression model to estimate the impact of various factors on cost per cancer case reported. The cost of reporting a cancer case varied across the registries. Central cancer registries that receive high-quality data from reporting sources (as measured by the percentage of records passing automatic edits) and electronic data submissions, and those that collect and report on a large volume of cases had significantly lower cost per case. The volume of cases reported had a large effect, with low-volume registries experiencing much higher cost per case than medium- or high-volume registries. Our results suggest that registries operate with substantial fixed or semivariable costs. Therefore, sharing fixed costs among low-volume contiguous state registries, whenever possible, and centralization of certain processes can result in economies of scale. Approaches to improve quality of data submitted and increasing electronic reporting can also reduce cost.

Parental perceptions surrounding polio and self-reported non-participation in polio supplementary immunization activities in Karachi, Pakistan: a mixed methods study.

Science.gov (United States)

Khowaja, Asif Raza; Khan, Sher Ali; Nizam, Naveeda; Omer, Saad Bin; Zaidi, Anita

2012-11-01

To assess parent's knowledge and perceptions surrounding polio and polio vaccination, self-reported participation in polio supplementary immunization activities (SIAs) targeting children aged questionnaire was administered to assess parental knowledge of polio and participation in polio SIAs conducted in September and October 2011. Additionally, 30 parents of Pashtun ethnicity (a high-risk group) who refused to vaccinate their children were interviewed in depth to determine why. Descriptive and bivariate analyses by ethnic and socioeconomic group were performed for quantitative data; thematic analysis was conducted for qualitative interviews with Pashtun parents. Of 1017 parents surveyed, 412 (41%) had never heard of polio; 132 (13%) did not participate in one SIA and 157 (15.4%) did not participate in either SIA. Among non-participants, 34 (21.6%) reported not having been contacted by a vaccinator; 116 (73.9%) reported having refused to participate, and 7 (4.5%) reported that the child was absent from home when the vaccinator visited. Refusals clustered in low-income Pashtun (43/441; 9.8%) and high-income families of any ethnic background (71/153; 46.4%). Low-income Pashtuns were more likely to not have participated in polio SIAs than low-income non-Pashtuns (odds ratio, OR: 7.1; 95% confidence interval, CI: 3.47-14.5). Reasons commonly cited among Pashtuns for refusing vaccination included fear of sterility; lack of faith in the polio vaccine; scepticism about the vaccination programme, and fear that the vaccine might contain religiously forbidden ingredients. In Karachi, interruption of polio transmission requires integrated and participatory community interventions targeting high-risk populations.

Common variables in European pancreatic cancer registries

DEFF Research Database (Denmark)

De Leede, E. M.; Sibinga Mulder, B. G.; Bastiaannet, E.

2016-01-01

Background Quality assurance of cancer care is of utmost importance to detect and avoid under and over treatment. Most cancer data are collected by different procedures in different countries, and are poorly comparable at an international level. EURECCA, acronym for European Registration of Cancer...... registries, as well as specific pancreatic cancer audits/registries, were invited to participate in EURECCA Pancreas. Participating countries were requested to share an overview of their collected data items. Of the received datasets, a shared items list was made which creates insight in similarities between...

Relationship of self-liking, self-competence with self-reported oral health status among 15-year-old children of Davangere city: A cross-sectional survey

Directory of Open Access Journals (Sweden)

Anjan Giriraju

2015-01-01

Full Text Available Introduction: Psychological constructs have been found to have potential effects in the improvement of health. Self-esteem (expressed in the form of sub-constructs: Self-liking and self-competence is a construct, which makes one realize the self. This in turn will result in positive oral-health-seeking behavior and improvement in oral health status. Aim: To assess the relationship of self-liking, self-competence with self-reported oral health status in children aged 15 years, in Davangere city. Materials and Methods: A descriptive, cross-sectional survey was conducted on 220 15-year-old subjects in Davangere City. Specially designed pro forma containing Romanian self-administered questionnaire to record the self-reported oral health status and Tafarodi's SLC scale to measure self-liking/self-competence was used. Chi-square test was used for statistical analysis. Results: A majority of the participants were found to have moderate self-competence and self-liking and their self-reported oral health status was expressed as "excellent." They reported very less or no untreated decayed teeth and no extracted teeth or gingival bleeding. Conclusion: The participants with better self-competence and self-liking perceived their oral health status as good. They reported lesser incidence of oral diseases and discomfort. Self-esteem and oral health were found to be positively related.

The relationship between self-efficacy and transition to work or studies in young adults with disabilities.

Science.gov (United States)

Andersén, Åsa; Larsson, Kjerstin; Pingel, Ronnie; Kristiansson, Per; Anderzén, Ingrid

2018-03-01

To investigate perceived self-efficacy in unemployed young adults with disabilities, and the association between self-efficacy and transition to work or studies. This prospective cohort study collected data through self-report questionnaires and registry data from a vocational rehabilitation project with young adults, aged 19-29 years. The Swedish Social Insurance Agency, the Swedish Public Employment Service and the participating municipalities identified potential participants for the study. A total of 531 participants were included in the study, of which 249 (47%) were available for analysis. Multinomial logistic regression models were carried out to estimate the associations between self-efficacy, demographic (age, country of birth, education level), health and employment status. The latter was coded as: 'no transition to work or studies', 'transition to studies', and 'transition to work'. A higher level of self-efficacy was associated with increased odds for 'transition to work' (OR = 2.37, p young adults with disabilities in order to support their transition and integration into the labour market.

Understanding the patient perspective on research access to national health records databases for conduct of randomized registry trials.

Science.gov (United States)

Avram, Robert; Marquis-Gravel, Guillaume; Simard, François; Pacheco, Christine; Couture, Étienne; Tremblay-Gravel, Maxime; Desplantie, Olivier; Malhamé, Isabelle; Bibas, Lior; Mansour, Samer; Parent, Marie-Claude; Farand, Paul; Harvey, Luc; Lessard, Marie-Gabrielle; Ly, Hung; Liu, Geoffrey; Hay, Annette E; Marc Jolicoeur, E

2018-07-01

Use of health administrative databases is proposed for screening and monitoring of participants in randomized registry trials. However, access to these databases raises privacy concerns. We assessed patient's preferences regarding use of personal information to link their research records with national health databases, as part of a hypothetical randomized registry trial. Cardiology patients were invited to complete an anonymous self-reported survey that ascertained preferences related to the concept of accessing government health databases for research, the type of personal identifiers to be shared and the type of follow-up preferred as participants in a hypothetical trial. A total of 590 responders completed the survey (90% response rate), the majority of which were Caucasians (90.4%), male (70.0%) with a median age of 65years (interquartile range, 8). The majority responders (80.3%) would grant researchers access to health administrative databases for screening and follow-up. To this end, responders endorsed the recording of their personal identifiers by researchers for future record linkage, including their name (90%), and health insurance number (83.9%), but fewer responders agreed with the recording of their social security number (61.4%, pgranting researchers access to the administrative databases (OR: 1.69, 95% confidence interval: 1.03-2.90; p=0.04). The majority of Cardiology patients surveyed were supportive of use of their personal identifiers to access administrative health databases and conduct long-term monitoring in the context of a randomized registry trial. Copyright © 2018 Elsevier Ireland Ltd. All rights reserved.

Social networks, social participation and self-perceived health among older people in transitional Kosovo.

Science.gov (United States)

Jerliu, Naim; Burazeri, Genc; Toçi, Ervin; Kempen, Gertrudis I J M; Jongen, Wesley; Ramadani, Naser; Brand, Helmut

2014-04-01

A number of studies proved that social networks and social participation have beneficial health effects in western countries. However, the evidence from southeast European region is scant. We aimed to assess the extent of social networks and social participation and their relationship with self-perceived health status among older people in post-war Kosovo. A nationwide cross-sectional study was conducted in Kosovo in 2011 including a representative sample of 1890 individuals aged ≥65 years (949 men, mean age 73 ± 6 years; 941 women, mean age 74 ± 7 years; response rate: 83%). Social networks were assessed by means of number of friends and family members that participants had contacts with, whereas social participation by involvement in social groupings/organizations. Information on self-perceived health status and demographic and socioeconomic characteristics was also collected. Overall, 93% of study participants reported that they had at least weekly contacts with more than one family member, and 97% reported daily contacts with their respective friends. Conversely, only 14% of participants reported engagement with social groupings. Generally, individuals who had contacts with friends and/or engaged with social organizations reported a better health status. Our findings point to strong family ties in this patriarchal society. Conversely, levels of social participation were considerably lower in Kosovo compared with the western European countries. The low participation levels in social groupings and their putative deleterious health effects should raise the awareness of policymakers to improve the conditions and increase the degree of social participation among older people in transitional Kosovo.

Cognitive function and the agreement between self-reported and accelerometer-accessed physical activity.

Science.gov (United States)

Herbolsheimer, Florian; Riepe, Matthias W; Peter, Richard

2018-02-21

Numerous studies have reported weak or moderate correlations between self-reported and accelerometer-assessed physical activity. One explanation is that self-reported physical activity might be biased by demographic, cognitive or other factors. Cognitive function is one factor that could be associated with either overreporting or underreporting of daily physical activity. Difficulties in remembering past physical activities might result in recall bias. Thus, the current study examines whether the cognitive function is associated with differences between self-reported and accelerometer-assessed physical activity. Cross-sectional data from the population-based Activity and Function in the Elderly in Ulm study (ActiFE) were used. A total of 1172 community-dwelling older adults (aged 65-90 years) wore a uniaxial accelerometer (activPAL unit) for a week. Additionally, self-reported physical activity was assessed using the LASA Physical Activity Questionnaire (LAPAQ). Cognitive function was measured with four items (immediate memory, delayed memory, recognition memory, and semantic fluency) from the Consortium to Establish a Registry for Alzheimer's Disease Total Score (CERAD-TS). Mean differences of self-reported and accelerometer-assessed physical activity (MPA) were associated with cognitive function in men (r s  = -.12, p = .002) but not in women. Sex-stratified multiple linear regression analyses showed that MPA declined with high cognitive function in men (β = -.13; p = .015). Results suggest that self-reported physical activity should be interpreted with caution in older populations, as cognitive function was one factor that explained the differences between objective and subjective physical activity measurements.

Intergenerational effects of endocrine-disrupting compounds: a review of the Michigan polybrominated biphenyl registry.

Science.gov (United States)

Curtis, Sarah W; Conneely, Karen N; Marder, Mary E; Terrell, Metrecia L; Marcus, Michele; Smith, Alicia K

2018-06-11

Endocrine-disrupting compounds (EDCs) are a broad class of chemicals present in many residential products that can disrupt hormone signaling and cause health problems in humans. Multigenerational cohorts, like the Michigan polybrominated biphenyl registry, are ideal for studying the effects of intergenerational exposure. Registry participants report hormone-related health problems, particularly in those exposed before puberty or those in the second generation exposed through placental transfer or breastfeeding. However, more research is needed to determine how EDCs cause health problems and the mechanisms underlying intergenerational exposure. Utilizing existing data in this registry, along with genetic and epigenetic approaches, could provide insight to how EDCs cause human disease and help to determine the risk to exposed populations and future generations.

The accuracy of self-reported history of seizures in Danish, Norwegian and U.S. twins

DEFF Research Database (Denmark)

Corey, Linda A; Kjeldsen, Marianne J; Solaas, Marit H

2009-01-01

. The accuracy of these reports was assessed. Self-reported epilepsy was verified in 81.9% of twins overall (86.1% (DTR), 75.6% (NTR) and 80.7% (MATR)). However, when both pair members reported a history of epilepsy in the affected pair member, epilepsy was verified in >90% of cases. Among MATR twins...... of this approach in identifying true cases. Information on history of seizures obtained by questionnaire from members of 47,626 twin pairs included in the Mid-Atlantic (MATR), Danish (DTR) and Norwegian (NTR) Twin Registries was verified using medical records and detailed clinical and family interviews...... with a verified history of epilepsy, 21.5% reported other seizures but not epilepsy and 18.5% of verified Norwegian epilepsy cases reported no history of epilepsy themselves and were identified only through their co-twin. The results of this study indicate that the accuracy of self-reported epilepsy and febrile...

The implementation of a national trauma registry in Greece. Methodology and preliminary results.

Science.gov (United States)

Katsaragakis, Stylianos; Theodoraki, Maria E; Toutouzas, Kostas; Drimousis, Panagiotis G; Larentzakis, Antreas; Stergiopoulos, Spiros; Aggelakis, Christos; Lapidakis, George; Massalis, Ioannis; Theodorou, Dimitrios

2009-12-01

Trauma is a leading cause of death worldwide and a major health problem of the modern society. Trauma systems are considered the gold standard of managing patients with trauma. An integral part of any trauma system is a trauma registry. In Europe, and particularly in Greece, trauma registries and systems are in an embryonic stage. In this study, we present an attempt to record trauma in Greece. The Hellenic Society of Trauma and Emergency Surgery invited all the official representatives of the society throughout the country to participate in the study. In succeeding meetings of the representatives, the reporting form was developed and the inclusion criteria were defined meticulously. Inclusion criteria were defined as patients with trauma requiring admission, transfer to a higher level center, or arrived dead or died in the emergency department of the reporting hospital. All reports were accumulated by the Hellenic Trauma society, imported in an electronic database, and analyzed. Thirty-two hospitals receiving patients with trauma participated in the country, representing 40% of the country's healthcare facilities and serving 40% of the country's population. In 12 months time, (October 2005 to September 2006), 8,862 patients were included in the study. Of them, 66.9% were men and 31.3% were women. The compilation rate of the reporting forms was surprisingly high, considering that the final reporting form included 150 data points and that there were no independent personnel in charge of filling the forms. Trauma registries are feasible even in health care systems where funding of medical research is sparse.

Accuracy of self-reported height, weight and waist circumference in a Japanese sample.

Science.gov (United States)

Okamoto, N; Hosono, A; Shibata, K; Tsujimura, S; Oka, K; Fujita, H; Kamiya, M; Kondo, F; Wakabayashi, R; Yamada, T; Suzuki, S

2017-12-01

Inconsistent results have been found in prior studies investigating the accuracy of self-reported waist circumference, and no study has investigated the validity of self-reported waist circumference among Japanese individuals. This study used the diagnostic standard of metabolic syndrome to assess the accuracy of individual's self-reported height, weight and waist circumference in a Japanese sample. Study participants included 7,443 Japanese men and women aged 35-79 years. They participated in a cohort study's baseline survey between 2007 and 2011. Participants' height, weight and waist circumference were measured, and their body mass index was calculated. Self-reported values were collected through a questionnaire before the examination. Strong correlations between measured and self-reported values for height, weight and body mass index were detected. The correlation was lowest for waist circumference (men, 0.87; women, 0.73). Men significantly overestimated their waist circumference (mean difference, 0.8 cm), whereas women significantly underestimated theirs (mean difference, 5.1 cm). The sensitivity of self-reported waist circumference using the cut-off value of metabolic syndrome was 0.83 for men and 0.57 for women. Due to systematic and random errors, the accuracy of self-reported waist circumference was low. Therefore, waist circumference should be measured without relying on self-reported values, particularly in the case of women.

42 CFR 137.15 - Who may participate in Tribal Self-Governance?

Science.gov (United States)

2010-10-01

... 42 Public Health 1 2010-10-01 2010-10-01 false Who may participate in Tribal Self-Governance? 137... HEALTH SERVICE, DEPARTMENT OF HEALTH AND HUMAN SERVICES TRIBAL SELF-GOVERNANCE Selection of Indian Tribes for Participation in Self-Governance § 137.15 Who may participate in Tribal Self-Governance? Those...

Cultural activity participation and associations with self-perceived health, life-satisfaction and mental health: the Young HUNT Study, Norway.

Science.gov (United States)

Hansen, Elisabeth; Sund, Erik; Skjei Knudtsen, Margunn; Krokstad, Steinar; Holmen, Turid Lingaas

2015-06-10

Leisure time activities and culture participation may have health effects and be important in pulic health promotion. More knowledge on how cultural activity participation may influence self-perceived health, life-satisfaction, self-esteem and mental health is needed. This article use data from the general population-based Norwegian HUNT Study, using the cross-sectional Young-HUNT3 (2006-08) Survey including 8200 adolescents. Data on cultural activity participation, self-perceived health, life-satisfaction, self-esteem, anxiety and depression were collected by self-reported questionnaires. Both attending meetings or training in an organisation or club, and attending sports events were positively associated with each of the health parameters good self-percieved health, good life-satisfaction, good self-esteem, and low anxiety and depression symptoms. We found differences according to gender and age (13-15 years versus 16-19 years old) for several culture activities, where girls aged 16-19 years seemed to benefit most from being culturally active. The extent of participation seemed to matter. Those who had frequent participation in cultural activities reported better health outcomes compared to inactive adolecents. The results from this study indicate that participation in cultural activities may be positively associated with health, life-satisfaction and self-esteem in adolescents and thus important in public health promotion. Possible sex and age differences should be taken into account.

Weight control behaviors of highly successful weight loss maintainers: the Portuguese Weight Control Registry.

Science.gov (United States)

Santos, Inês; Vieira, Paulo N; Silva, Marlene N; Sardinha, Luís B; Teixeira, Pedro J

2017-04-01

To describe key behaviors reported by participants in the Portuguese Weight Control Registry and to determine associations between these behaviors and weight loss maintenance. A total of 388 adults participated in this cross-sectional study. Assessments included demographic information, weight history, weight loss and weight maintenance strategies, dietary intake, and physical activity. Participants lost on average 18 kg, which they had maintained for ~28 months. Their average dietary intake was 2199 kcal/day, with 33 % of energy coming from fat. About 78 % of participants engaged in levels of moderate-plus-vigorous physical activity exceeding 150 min/week (51 % above 250 min/week), with men accumulating 82 more minutes than women (p breakfast. Greater weight loss maintenance was associated with higher levels of physical activity, walking, weight self-monitoring, establishing specific goals, and with reduced portion size use, reduced consumption of carbohydrates, and increased consumption of protein, (p < 0.05). Results indicate that weight loss maintenance is possible through the adoption of a nutritionally-balanced diet and regular participation in physical activity, but also suggest that adopting different (and, to a degree, individualized) set of behavioral strategies is key for achieving success.

The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry

Directory of Open Access Journals (Sweden)

Christopher J. Ryerson

2016-01-01

Full Text Available Background. The relative rarity and diversity of fibrotic interstitial lung disease (ILD have made it challenging to study these diseases in single-centre cohorts. Here we describe formation of a multicentre Canadian registry that is needed to describe the outcomes of fibrotic ILD and to enable detailed healthcare utilization analyses that will be the cornerstone for future healthcare planning. Methods. The Canadian Registry for Pulmonary Fibrosis (CARE-PF is a prospective cohort anticipated to consist of at least 2,800 patients with fibrotic ILD. CARE-PF will be used to (1 describe the natural history of fibrotic ILD, specifically determining the incidence and outcomes of acute exacerbations of ILD subtypes and (2 determine the impact of ILD and acute exacerbations of ILD on health services use and healthcare costs in the Canadian population. Consecutive patients with fibrotic ILD will be recruited from five Canadian ILD centres over a period of five years. Patients will be followed up as clinically indicated and will complete standardized questionnaires at each clinic visit. Prespecified outcomes and health services use will be measured based on self-report and linkage to provincial health administrative databases. Conclusion. CARE-PF will be among the largest prospective multicentre ILD registries in the world, providing detailed data on the natural history of fibrotic ILD and the healthcare resources used by these patients. As the largest and most comprehensive cohort of Canadian ILD patients, CARE-PF establishes a network for future clinical research and early phase clinical trials and provides a platform for translational and basic science research.

Accident rates and types among self-employed private forest owners.

Science.gov (United States)

Lindroos, Ola; Burström, Lage

2010-11-01

Half of all Swedish forests are owned by private individuals, and at least 215,000 people work in these privately owned forest holdings. However, only lethal accidents are systematically monitored among self-employed forest workers. Therefore, data from the registries of the Swedish Work Environment Authority, the Labor Insurance Organization and the regional University Hospital in Umeå were gathered to allow us to perform a more in-depth assessment of the rate and types of accidents that occurred among private forest owners. We found large differences between the registries in the type and number of accidents that were reported. We encountered difficulties in defining "self-employed forest worker" and also in determining whether the accidents that did occur happened during work or leisure time. Consequently, the estimates for the accident rate that we obtained varied from 32 to > or = 4300 injured persons per year in Sweden, depending on the registry that was consulted, the definition of the sample population that was used, and the accident severity definition that was employed. Nevertheless, the different registries gave a consistent picture of the types of accidents that occur while individuals are participating in self-employed forestry work. Severe accidents were relatively common, as self-employed forestry work fatalities constituted 7% of the total number of fatalities in the work authority registry. Falling trees were associated with many of these fatal accidents as well as with accidents that resulted in severe non-fatal injuries. Thus, unsafe work methods appeared more related to the occurrence of an accident than the equipment that was being used at the time of the accident (e.g., a chainsaw). Improvement of the workers' skills should therefore be considered to be an important prevention measure that should be undertaken in this field. The challenges in improving the safety in these smallest of companies, which fall somewhere between the purview of

Validity of self-reported exposure to shift work.

Science.gov (United States)

Härmä, Mikko; Koskinen, Aki; Ropponen, Annina; Puttonen, Sampsa; Karhula, Kati; Vahtera, Jussi; Kivimäki, Mika

2017-03-01

To evaluate the validity of widely used questionnaire items on work schedule using objective registry data as reference. A cohort study of hospital employees who responded to a self-administered questionnaire on work schedule in 2008, 2012 and 2014 and were linked to individual-level pay-roll-based records on work shifts. For predictive validity, leisure-time fatigue was assessed. According to the survey data in 2014 (n=8896), 55% of the day workers had at least 1 year of earlier shift work experience. 8% of the night shift workers changed to day work during the follow-up. Using pay-roll data as reference, questions on 'shift work with night shifts' and 'permanent night work' showed high sensitivity (96% and 90%) and specificity (92% and 97%). Self-reported 'regular day work' showed moderate sensitivity (73%), but high specificity (99%) and 'shift work without night shifts' showed low sensitivity (62%) and moderate specificity (87%). In multivariate logistic regression analysis, the age-adjusted, sex-adjusted and baseline fatigue-adjusted association between 'shift work without night shifts' and leisure-time fatigue was lower for self-reported compared with objective assessment (1.30, 95% CI 0.94 to 1.82, n=1707 vs 1.89, 95% CI 1.06 to 3.39, n=1627). In contrast, shift work with night shifts, compared with permanent day work, was similarly associated with fatigue in the two assessments (2.04, 95% CI 1.62 to 2.57, n=2311 vs 1.82, 95% CI 1.28 to 2.58, n=1804). The validity of self-reported assessment of shift work varies between work schedules. Exposure misclassification in self-reported data may contribute to bias towards the null in shift work without night shifts. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

United States Transuranium Registry summary report to June 30, 1974 to USAEC Division of Biomedical and Environmental Research

International Nuclear Information System (INIS)

Norwood, W.D.; Newton, C.E. Jr.

1974-06-01

This report gives some of the highlights of the US Transuranium Registry since its inception in late 1968 together with more detailed information concerning the activities for the year ending April 30, 1974. Articles are referred to which describe autopsy studies to determine plutonium body content, performed since 1949 for the purpose of evaluating plant health safety programs. The purpose of the Registry is described and its administrative direction is discussed. The Registry is a data collecting agency whose success depends upon how well the data is collected by the cooperating companies is described

Implementation of a population-based epidemiological rare disease registry: study protocol of the amyotrophic lateral sclerosis (ALS)--registry Swabia.

Science.gov (United States)

Nagel, Gabriele; Unal, Hatice; Rosenbohm, Angela; Ludolph, Albert C; Rothenbacher, Dietrich

2013-02-17

The social and medical impact of rare diseases is increasingly recognized. Amyotrophic lateral sclerosis (ALS) is the most prevalent of the motor neuron diseases. It is characterized by rapidly progressive damage to the motor neurons with a survival of 2-5 years for the majority of patients. The objective of this work is to describe the study protocol and the implementation steps of the amyotrophic lateral sclerosis (ALS) registry Swabia, located in the South of Germany. The ALS registry Swabia started in October 2010 with both, the retrospective (01.10.2008-30.09.2010) and prospective (from 01.10.2010) collection of ALS cases, in a target population of 8.6 million persons in Southern Germany. In addition, a population based case-control study was implemented based on the registry that also included the collection of various biological materials.Retrospectively, 420 patients (222 men and 198 women) were identified. Prospectively data of ALS patients were collected, of which about 70% agreed to participate in the population-based case-control study. All participants in the case-control study provided also a blood sample. The prospective part of the study is ongoing. The ALS registry Swabia has been implemented successfully. In rare diseases such as ALS, the collaboration of registries, the comparison with external samples and biorepositories will facilitate to identify risk factors and to further explore the potential underlying pathophysiological mechanisms.

United States transuranium and uranium registries. Annual report, October 1, 1995--September 30, 1996

Energy Technology Data Exchange (ETDEWEB)

Kathren, R.L.; Ehrhart, S.M. [eds.

1997-04-01

This Annual Report covers the period October 1, 1995 through September 30, 1996, and includes both scientific and administrative activities. As of September 30, 1996, the Registries had a total of 886 registrants of whom 350 were deceased and 292 classified as active. An anticipated funding cut of approximately 35% for the period beginning October 1, 1996, necessitated some staff cuts, but it is anticipated that the Registries core research will be maintained albeit at a somewhat slower pace. The Registries received approximately 60 public information requests or inquiries ranging over a wide range of topics, about a third of which came from the media or official agencies, including Congress. Specific noteworthy inquiries were received from the President`s Advisory Committee on the Gulf War Veterans with regard to uranium biokinetics and toxicity, and from the County of Los Angeles and the State of California with regard to the management and dosimetry of two separate instances of acute accidental intakes of {sup 241}Am.

Accuracy of Self-Reported Weight Among Adolescent and Young Adults Following Bariatric Surgery.

Science.gov (United States)

Jenkins, Todd M; Boyce, Tawny W; Ralph Buncher, C; Zeller, Meg H; Courcoulas, Anita P; Evans, Mary; Inge, Thomas H

2017-06-01

This study evaluates accuracy of self-reported weight in adolescent bariatric surgery patients. During follow-up visits, participants self-reported weight and had weight measured. The differences between self-reported and measured weights were analyzed from 60 participants. Participants were 70% (n = 42) female, 72% (n = 43) white, mean age of 20.8 years and a median body mass index of 36.6 kg/m 2 . At an average of 3.5 years following surgery, females underestimated weight (0.5 kg, range: -18.7 to 5.6 kg), while males overestimated (1.1 kg, range: -7.8 to 15.2 kg). Most (80%, n = 48) reported within 5 kg of measured weight. The majority of adolescents who previously underwent bariatric surgery reported reasonably accurate weights, but direction of misreporting varied by gender. Self-reported weights could be utilized when measured values are unavailable without markedly biasing the interpretation of outcomes.

Under-reporting of conflicts of interest among trialists

DEFF Research Database (Denmark)

Rasmussen, Kristine; Schroll, Jeppe; Gøtzsche, Peter C

2015-01-01

compared to what was registered on the Danish Health and Medicines Authority's public disclosure list. PARTICIPANTS: Trial authors who are Danish physicians. MAIN OUTCOME MEASURES: Number of disclosed and undisclosed COIs. RESULTS: One observer screened 928 articles and two observers assessed 120 articles...... in journals adhering to the International Committee of Medical Journal Editors' manuscript guidelines. Self-declared COIs cannot be trusted, but public registries may assist editors in ensuring that more COIs are being reported....

Self-Reported Presence and Experience of Pain in Adults with Down Syndrome.

Science.gov (United States)

de Knegt, Nanda C; Lobbezoo, Frank; Schuengel, Carlo; Evenhuis, Heleen M; Scherder, Erik J A

2017-07-01

The aim was to examine whether the presence of pain (based on physical conditions and participants' report) and self-reported pain experience in adults with Down syndrome (DS) differ from general population controls. Cross-sectional study of 224 adults with DS (mean age = 38.1 years, mild-severe intellectual disabilities) and 142 age-matched controls (median age = 40.5 years, mean estimated IQ = 105.7) in the Netherlands. File-based medical information was evaluated. Self-reported presence and experience of pain were assessed in rest and after movement during a test session (affect with facial affective scale (FAS: 0.04-0.97), intensity assessed with numeric rating scale (NRS: 0-10). Compared with controls, more DS participants had physical conditions that may cause pain and/or discomfort ( p  = .004, 50% vs 35%), but fewer DS participants reported pain during the test session ( p  = .003, 58% vs 73%). Of the participants who indicated pain and comprehended self-reporting scales ( n  = 198 FAS, n  = 161 NRS), the DS group reported a higher pain affect and intensity than the controls ( p  painful/discomforting physical conditions reported pain. Those who did indicated a higher pain experience than adults from the general population. Research into spontaneous self-report of pain, repeated pain assessment, and acute pain is needed in people with DS for more insight into pain experience and mismatches between self-report and medical information. © 2016 American Academy of Pain Medicine. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

Children's Decision-Making Involvement About Research Participation: Associations With Perceived Fairness and Self-Efficacy.

Science.gov (United States)

Miller, Victoria A; Feudtner, Chris; Jawad, Abbas F

2017-04-01

The primary objective of this study was to examine the associations of children's involvement in decisions about research participation with their perceptions of the decision-making process and self-efficacy. Participants were children (ages 8-17) who enrolled in research studies in the prior 2 months. Children completed a questionnaire that yielded three decision-making involvement subscales: Researcher Engages Child, Researcher Supports Autonomy, and Child Participates. Children reported on fairness of the decision-making process and health-related decision self-efficacy. After adjusting for age, higher scores on Researcher Engages Child were associated with greater self-efficacy, and higher scores on Researcher Supports Autonomy were associated with greater perceived fairness. These data underscore the potential importance of researcher-child interactions about research participation when assent is sought, including proactively involving children in the decision by asking for their opinions and communicating their central role in the decision, which are likely to be more meaningful to children than receiving information or signing a form.

Instability of self-esteem, self-confidence, self-liking, self-control, self-competence and perfectionism: associations with oral health status and oral health-related behaviours.

Science.gov (United States)

Dumitrescu, A L; Zetu, L; Teslaru, S

2012-02-01

Our aim was to explore whether instability of self-esteem, self-confidence, self-liking, self-control, self-competence and perfectionism each has an independent contribution to the self-rated oral health and oral health-related behaviours. A cross-sectional study design was used. Data were collected between November 2008 and May 2009. The sample consisted of 205 Romanian adults (mean age: 29.84 years; 65.2% women; 40% married) who were a random population drawn consecutively from the registry file of two private dental practices in the Iasi area. The questionnaire included information about demographic, psychological, self-reported oral health and oral health-related behaviour items. The comparison of participants who never flossed their teeth with those who flossed everyday showed statistically significant lower levels of self-confidence (P self-liking (P = 0.001), self-competence (P self-control (P self-competence were scored in persons who used weekly mouthrinses comparing with never users (P = 0.012). Also patients who visited the dentist mainly when treatment is needed or when pain presented lower levels of self-competence and self-control comparing with those who visited the dentist mainly for check-up or for tooth cleaning and scaling (P self-competence and perfectionism variables. Our study showed that instability of self-esteem, self-confidence, self-competence, self-liking, self-control and perfectionism was associated not only with self-rated dental health but also with oral health behaviours. Understanding the psychological factors associated with oral hygiene can further the development and improvement in therapeutic strategies to be used in oral health-improving programs, as well as of programs aimed at prevention and education. © 2011 John Wiley & Sons A/S.

Differences in participation based on self-esteem in power and manual wheelchair users on a university campus: a pilot study.

Science.gov (United States)

Rice, Ian M; Wong, Alex W K; Salentine, Benjamin A; Rice, Laura A

2015-03-01

To examine the relationship of self-esteem and wheelchair type with participation of young adult manual and power wheelchair users with diverse physical disabilities. Cross-sectional survey study. Large University Campus. A convenience sample of college students (N = 39) with self-reported physical disabilities who are full time wheelchair users (>40 per week) and are two or more years post illness or injury. Not applicable. The Rosenberg Self-Esteem Scale was used to measure self-esteem, and the Craig Handicap Assessment and Reporting Technique was used to measure participation. Self-esteem correlated highly with cognitive independence (CI) (r = 0.58), mobility (r = 0.67) and social integration (SI) (r = 0.52). Use of manual wheelchair was significantly related to higher levels of CI and mobility while longer use of any wheelchair (power or manual) was significantly associated with higher levels of mobility and SI. In addition higher self-esteem independently predicted a significant proportion of the variance in CI, mobility and SI, while type of wheelchair predicted a significant proportion of the variance in CI (p self-esteem was found to be the strongest predictor of participation in a population of young adults with mobility limitations. Better understanding of the factors influencing participation may help to facilitate new interventions to minimize the disparities between persons with disabilities and their able bodied peers. Implication for Rehabilitation A total of 46.8% of wheelchair users report the desire for increased community participant but face significant barriers. The type of wheelchair has been identified as having a large impact on participation. This study found self-esteem to be the strongest predictor of participation, which is notable because self-esteem is a characteristic that is potentially modifiable with treatment.

Hyper IgM Syndrome: a Report from the USIDNET Registry.

Science.gov (United States)

Leven, Emily A; Maffucci, Patrick; Ochs, Hans D; Scholl, Paul R; Buckley, Rebecca H; Fuleihan, Ramsay L; Geha, Raif S; Cunningham, Coleen K; Bonilla, Francisco A; Conley, Mary Ellen; Ferdman, Ronald M; Hernandez-Trujillo, Vivian; Puck, Jennifer M; Sullivan, Kathleen; Secord, Elizabeth A; Ramesh, Manish; Cunningham-Rundles, Charlotte

2016-07-01

The United States Immunodeficiency Network (USIDNET) patient registry was used to characterize the presentation, genetics, phenotypes, and treatment of patients with Hyper IgM Syndrome (HIGM). The USIDNET Registry was queried for HIGM patient data collected from October 1992 to July 2015. Data fields included demographics, criteria for diagnosis, pedigree analysis, mutations, clinical features, treatment and transplant records, laboratory findings, and mortality. Fifty-two physicians entered data from 145 patients of ages 2 months to 62 years (median 12 years); 131 were males. Using patients' age at last entry, data from 2072 patient years are included. Mutations were recorded for 85 subjects; 82 were in CD40LG. Eighteen subjects had non-X-linked HIGM. 40 % had a normal serum IgM and 15 %, normal IgA. Infections were reported for 91 %, with pulmonary, ear, and sinus infections being the most common. 42 % had Pneumocystis jirovecii pneumonia; 6 % had Cryptosporidium. 41 % had neutropenia. 78 % experienced non-infectious complications: chronic diarrhea (n = 22), aphthous ulcers (n = 28), and neoplasms (n = 8) including colon cancer, adrenal adenoma, liver adenocarcinoma, pancreatic carcinoid, acute myeloid leukemia, hepatoma, and, in a female with an autosomal dominant gain of function mutation in PIK3CD, an ovarian dysgerminoma. Thirteen patients had a hematopoietic marrow or stem cell transplant; three had solid organ transplants. Thirteen were known to have died (median age = 14 years). Analysis of the USIDNET Registry provides data on the common clinical features of this rare syndrome, and in contrast with previously published data, demonstrates longer survival times and reduced gastrointestinal manifestations.

Validation of self-reported cannabis dose and potency: an ecological study

NARCIS (Netherlands)

van der Pol, Peggy; Liebregts, Nienke; de Graaf, Ron; Korf, Dirk J.; van den Brink, Wim; van Laar, Margriet

2013-01-01

To assess the reliability and validity of self-reported cannabis dose and potency measures. Cross-sectional study comparing self-reports with objective measures of amount of cannabis and delta-9-tetrahydrocannabinol (THC) concentration. Ecological study with assessments at participants' homes or in

Describing the first 2000 registrations to the Research Registry®: A study protocol

Directory of Open Access Journals (Sweden)

Alexander J. Fowler

Full Text Available Background: In 2013, the Declaration of Helsinki was updated and required the registration of all research studies involving human participants. Prior registries focussed on the registration of clinical trials and systematic reviews, and we estimate that only 10% of observational research is registered in a publically accessible registry. The Research Registry® was established to provide a venue of registration for any study, prospectively or retrospectively, involving human participants. This protocol describes the analysis for the first 2000 registrations received to the Research Registry®. Methods and analysis: Data for each registration to the Research Registry® (www.researchregistry.com, adapted from the World Health Organisation minimum data set, has been collected since the launch of the registry in 2015. A weekly curation process ensures that inappropriate registrations, such as duplicate studies or those not involving human participants, are removed from the registry. We will present the characteristics of the first 2000 registrations and how they have changed overtime. A quality score will be calculated for each registration by two independent teams, and inter-rater reliability will be calculated. Funding sources of work registered will also be presented. This process will also be performed for the systematic review portion of the registry (‘The Review Registry’, which will be considered separately. Ethics and dissemination: Ethical approval is not required for this study as it involves no human participants. The findings will be presented at international conferences and published in a peer reviewed journal.

A Dutch Nationwide Bariatric Quality Registry: DATO.

Science.gov (United States)

Poelemeijer, Youri Q M; Liem, Ronald S L; Nienhuijs, Simon W

2017-12-22

In the Netherlands, the number of bariatric procedures increased exponentially in the 90s. To ensure and improve the quality of bariatric surgery, the nationwide Dutch Audit for Treatment of Obesity (DATO) was established in 2014. The audit was coordinated by the Dutch Institute for Clinical Auditing (DICA). This article provides a review of the aforementioned process in establishing a nationwide registry in the Netherlands. In collaboration with the DATO's scientific committee and other stakeholders, an annual list of several external quality indicators was formulated. This list consists of volume, process, and outcome indicators. In addition to the annual external indicators, the database permits individual hospitals to analyze their own data. The dashboard provides several standardized reports and detailed quality indicators, which are updated on a weekly base. Since the start, all 18 Dutch bariatric centers participated in the nationwide audit. A total of 21,941 cases were registered between 2015 and 2016. By 2016, the required variables were registered in 94.3% of all cases. A severe complicated course was seen in 2.87%, and mortality in 0.05% in 2016. The first-year follow-up shows a > 20% TWL in 86.1% of the registered cases. The DATO has become rapidly a mature registry. The well-organized structure of the national audit institution DICA and governmental funding were essential. However, most important were the bariatric teams themselves. The authors believe reporting the results from the registry has already contributed to more knowledge and acceptance by other health care providers.

Sexual Orientation, Objective Height, and Self-Reported Height.

Science.gov (United States)

Skorska, Malvina N; Bogaert, Anthony F

2017-01-01

Studies that have used mostly self-reported height have found that androphilic men and women are shorter than gynephilic men and women, respectively. This study examined whether an objective height difference exists or whether a psychosocial account (e.g., distortion of self-reports) may explain these putative height differences. A total of 863 participants, recruited at a Canadian university, the surrounding region, and through lesbian, gay, bisexual, and transgender (LGBT) events across Canada, self-reported their height and had their height measured. Androphilic men were shorter, on average, than gynephilic men. There was no objective height difference between gynephilic, ambiphilic, and androphilic women. Self-reported height, statistically controlling for objective height, was not related to sexual orientation. These findings are the first to show an objective height difference between androphilic and gynephilic men. Also, the findings suggest that previous studies using self-reported height found part of a true objective height difference between androphilic and gynephilic men. These findings have implications for existing biological theories of men's sexual orientation development.

Implementation of a population-based epidemiological rare disease registry: study protocol of the amyotrophic lateral sclerosis (ALS - registry Swabia

Directory of Open Access Journals (Sweden)

Nagel Gabriele

2013-02-01

Full Text Available Abstract Background The social and medical impact of rare diseases is increasingly recognized. Amyotrophic lateral sclerosis (ALS is the most prevalent of the motor neuron diseases. It is characterized by rapidly progressive damage to the motor neurons with a survival of 2–5 years for the majority of patients. The objective of this work is to describe the study protocol and the implementation steps of the amyotrophic lateral sclerosis (ALS registry Swabia, located in the South of Germany. Methods/Design The ALS registry Swabia started in October 2010 with both, the retrospective (01.10.2008-30.09.2010 and prospective (from 01.10.2010 collection of ALS cases, in a target population of 8.6 million persons in Southern Germany. In addition, a population based case–control study was implemented based on the registry that also included the collection of various biological materials. Retrospectively, 420 patients (222 men and 198 women were identified. Prospectively data of ALS patients were collected, of which about 70% agreed to participate in the population-based case–control study. All participants in the case–control study provided also a blood sample. The prospective part of the study is ongoing. Discussion The ALS registry Swabia has been implemented successfully. In rare diseases such as ALS, the collaboration of registries, the comparison with external samples and biorepositories will facilitate to identify risk factors and to further explore the potential underlying pathophysiological mechanisms.

Danish Hip Arthroscopy Registry (DHAR)

DEFF Research Database (Denmark)

Lund, Bent; Mygind-Klavsen, Bjarne; Grønbech Nielsen, Torsten

2017-01-01

The Danish Hip Arthroscopy Registry (DHAR) was initiated in January 2012 as a web-based prospective registry. The purpose of this study was to evaluate and report the first registry based outcome data of a national population with radiological and clinical femoroacetabular impingement (FAI......) data from DHAR between January 2012 and November 2015 were extracted. Radiological pincer-type FAI was defined as LCE > 35° and cam FAI as alpha-angle > 55°. These data were combined with FAI surgical data such as osteochondroplasty and labral repair or resection. PROMs consisting of HAGOS, EQ-5 D...

Danish Hip Arthroscopy Registry (DHAR)

DEFF Research Database (Denmark)

Lund, Bent; Mygind-Klavsen, Bjarne; Grønbech Nielsen, Torsten

2017-01-01

The Danish Hip Arthroscopy Registry (DHAR) was initiated in January 2012 as a web-based prospective registry. The purpose of this study was to evaluate and report the first registry based outcome data of a national population with radiological and clinical femoroacetabular impingement (FAI......) undergoing hip arthroscopic treatment. Our primary hypothesis was that patients undergoing hip arthroscopy would improve significantly in pain, quality of life and sports related outcome measurements in Patient Related Outcome Measures (PROM). Peri-operative data and Patient Reported Outcome Measures (PROM......-5 D demonstrated improvement after 1 and 2 years from 0.66 pre-op to 0.78 at 2 years. HSAS improved significantly from 2.5 to 3.3. Pain score data demonstrated improvement in NRS-rest 39 to 17 and NRS Walk 49 to 22 at follow-up. We conclude that patients with FAI undergoing hip arthroscopy...

Are data from national quality registries used in quality improvement at Swedish hospital clinics?

Science.gov (United States)

Fredriksson, Mio; Halford, Christina; Eldh, Ann Catrine; Dahlström, Tobias; Vengberg, Sofie; Wallin, Lars; Winblad, Ulrika

2017-11-01

To investigate the use of data from national quality registries (NQRs) in local quality improvement as well as purported key factors for effective clinical use in Sweden. Comparative descriptive: a web survey of all Swedish hospitals participating in three NQRs with different levels of development (certification level). Heads of the clinics and physician(s) at clinics participating in the Swedish Stroke Register (Riksstroke), the Swedish National Registry of Gallstone Surgery and Endoscopic Retrograde Cholangiopancreatography (GallRiks) and the Swedish Lung Cancer Registry (NLCR). Individual and unit level use of NQRs in local quality improvement, and perceptions on data quality, organizational conditions and user motivation. Riksstroke data were reported as most extensively used at individual and unit levels (x̅ 17.97 of 24 and x̅ 27.06 of 35). Data quality and usefulness was considered high for the two most developed NQRs (x̅ 19.86 for Riksstroke and x̅ 19.89 for GallRiks of 25). Organizational conditions were estimated at the same level for Riksstroke and GallRiks (x̅ 12.90 and x̅ 13.28 of 20) while the least developed registry, the NLCR, had lower estimates (x̅ 10.32). In Riksstroke, the managers requested registry data more often (x̅ 15.17 of 20). While there were significant differences between registries in key factors such as management interest, use of NQR data in local quality improvement seems rather prevalent, at least for Riksstroke. The link between the registry's level of development and factors important for routinization of innovations such as NQRs needs investigation. © The Author 2017. Published by Oxford University Press in association with the International Society for Quality in Health Care. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

Feelings of energy, exercise-related self-efficacy, and voluntary exercise participation.

Science.gov (United States)

Yoon, Seok; Buckworth, Janet; Focht, Brian; Ko, Bomna

2013-12-01

This study used a path analysis approach to examine the relationship between feelings of energy, exercise-related self-efficacy beliefs, and exercise participation. A cross-sectional mailing survey design was used to measure feelings of physical and mental energy, task and scheduling self-efficacy beliefs, and voluntary moderate and vigorous exercise participation in 368 healthy, full-time undergraduate students (mean age = 21.43 ± 2.32 years). The path analysis revealed that the hypothesized path model had a strong fit to the study data. The path model showed that feelings of physical energy had significant direct effects on task and scheduling self-efficacy beliefs as well as exercise behaviors. In addition, scheduling self-efficacy had direct effects on moderate and vigorous exercise participation. However, there was no significant direct relationship between task self-efficacy and exercise participation. The path model also revealed that scheduling self-efficacy partially mediated the relationship between feelings of physical energy and exercise participation.

Ongoing ostomy self-care challenges of long-term rectal cancer survivors.

Science.gov (United States)

Bulkley, Joanna E; McMullen, Carmit K; Grant, Marcia; Wendel, Christopher; Hornbrook, Mark C; Krouse, Robert S

2018-05-29

Surgical treatment for rectal cancer (RC) can result in an intestinal ostomy that requires lifelong adaptation and investment of physical, cognitive, and financial resources. However, little is known about the extent of ongoing challenges related to ostomy self-care among long-term RC survivors. We analyzed the prevalence of self-reported ostomy self-care challenges and the physical and environmental factors that can support or undermine ostomy self-care. We mailed surveys to long-term (≥ 5 years post-diagnosis) RC survivors, including 177 adults with ostomies who were members of integrated health systems in northern California, Oregon, and Washington State. Potential participants were identified through tumor registries. Data were also extracted from electronic health records. The response rate was 65%. The majority of respondents were male (67%), and the mean age was 75 years. Sixty-three percent of respondents reported at least one ostomy self-care challenge. The most common challenges were leakage or skin problems around the ostomy and needing to change the pouching system too frequently. Twenty-two percent reported difficulty caring for their ostomy. Younger age and higher BMI were consistently related to ostomy self-care challenges. The majority of RC survivors reported ostomy-related self-care challenges, and 31% experienced problems across multiple domains of ostomy self-care. In addition, most survivors reported significant physical challenges that could lead to ostomy-related disability. Although the participants surveyed had access to ostomy care nurses, the care gaps we found suggest that additional work is needed to understand barriers to ostomy care, reduce unmet needs, and improve well-being among this group.

Rationale and design of the iPap trial: a randomized controlled trial of home-based HPV self-sampling for improving participation in cervical screening by never- and under-screened women in Australia

International Nuclear Information System (INIS)

Sultana, Farhana; Gertig, Dorota M; English, Dallas R; Simpson, Julie A; Brotherton, Julia ML; Drennan, Kelly; Mullins, Robyn; Heley, Stella; Wrede, C David; Saville, Marion

2014-01-01

Organized screening based on Pap tests has substantially reduced deaths from cervical cancer in many countries, including Australia. However, the impact of the program depends upon the degree to which women participate. A new method of screening, testing for human papillomavirus (HPV) DNA to detect the virus that causes cervical cancer, has recently become available. Because women can collect their own samples for this test at home, it has the potential to overcome some of the barriers to Pap tests. The iPap trial will evaluate whether mailing an HPV self-sampling kit increases participation by never- and under-screened women within a cervical screening program. The iPap trial is a parallel randomized controlled, open label, trial. Participants will be Victorian women age 30–69 years, for whom there is either no record on the Victorian Cervical Cytology Registry (VCCR) of a Pap test (never-screened) or the last recorded Pap test was between five to fifteen years ago (under-screened). Enrolment information from the Victorian Electoral Commission will be linked to the VCCR to determine the never-screened women. Variables that will be used for record linkage include full name, address and date of birth. Never- and under-screened women will be randomly allocated to either receive an invitation letter with an HPV self-sampling kit or a reminder letter to attend for a Pap test, which is standard practice for women overdue for a test in Victoria. All resources have been focus group tested. The primary outcome will be the proportion of women who participate, by returning an HPV self-sampling kit for women in the self-sampling arm, and notification of a Pap test result to the Registry for women in the Pap test arm at 3 and 6 months after mailout. The most important secondary outcome is the proportion of test-positive women who undergo further investigations at 6 and 12 months after mailout of results. The iPap trial will provide strong evidence about whether HPV self

The use of databases and registries to enhance colonoscopy quality.

Science.gov (United States)

Logan, Judith R; Lieberman, David A

2010-10-01

Administrative databases, registries, and clinical databases are designed for different purposes and therefore have different advantages and disadvantages in providing data for enhancing quality. Administrative databases provide the advantages of size, availability, and generalizability, but are subject to constraints inherent in the coding systems used and from data collection methods optimized for billing. Registries are designed for research and quality reporting but require significant investment from participants for secondary data collection and quality control. Electronic health records contain all of the data needed for quality research and measurement, but that data is too often locked in narrative text and unavailable for analysis. National mandates for electronic health record implementation and functionality will likely change this landscape in the near future. Copyright © 2010 Elsevier Inc. All rights reserved.

The Pediatric Emergency Care Applied Research Network Registry: A Multicenter Electronic Health Record Registry of Pediatric Emergency Care.

Science.gov (United States)

Deakyne Davies, Sara J; Grundmeier, Robert W; Campos, Diego A; Hayes, Katie L; Bell, Jamie; Alessandrini, Evaline A; Bajaj, Lalit; Chamberlain, James M; Gorelick, Marc H; Enriquez, Rene; Casper, T Charles; Scheid, Beth; Kittick, Marlena; Dean, J Michael; Alpern, Elizabeth R

2018-04-01

 Electronic health record (EHR)-based registries allow for robust data to be derived directly from the patient clinical record and can provide important information about processes of care delivery and patient health outcomes.  A data dictionary, and subsequent data model, were developed describing EHR data sources to include all processes of care within the emergency department (ED). ED visit data were deidentified and XML files were created and submitted to a central data coordinating center for inclusion in the registry. Automated data quality control occurred prior to submission through an application created for this project. Data quality reports were created for manual data quality review.  The Pediatric Emergency Care Applied Research Network (PECARN) Registry, representing four hospital systems and seven EDs, demonstrates that ED data from disparate health systems and EHR vendors can be harmonized for use in a single registry with a common data model. The current PECARN Registry represents data from 2,019,461 pediatric ED visits, 894,503 distinct patients, more than 12.5 million narrative reports, and 12,469,754 laboratory tests and continues to accrue data monthly.  The Registry is a robust harmonized clinical registry that includes data from diverse patients, sites, and EHR vendors derived via data extraction, deidentification, and secure submission to a central data coordinating center. The data provided may be used for benchmarking, clinical quality improvement, and comparative effectiveness research. Schattauer.

Annual Outcomes With Transcatheter Valve Therapy: From the STS/ACC TVT Registry.

Science.gov (United States)

Holmes, David R; Nishimura, Rick A; Grover, Frederick L; Brindis, Ralph G; Carroll, John D; Edwards, Fred H; Peterson, Eric D; Rumsfeld, John S; Shahian, David M; Thourani, Vinod H; Tuzcu, E Murat; Vemulapalli, Sreekanth; Hewitt, Kathleen; Michaels, Joan; Fitzgerald, Susan; Mack, Michael J

2016-02-01

The Society of Thoracic Surgeons (STS)/American College of Cardiology (ACC) Transcatheter Valve Therapy (TVT) Registry has been a joint initiative of the STS and the ACC in concert with multiple stakeholders. The TVT Registry has important information regarding patient selection, delivery of care, science, education, and research in the field of structural valvular heart disease. This report provides an overview on current U.S. TVT practice and trends. The emphasis is on demographics, in-hospital procedural characteristics, and outcomes of patients having transcatheter aortic valve replacement (TAVR) performed at 348 U.S. centers. The TVT Registry captured 26,414 TAVR procedures as of December 31, 2014. Temporal trends between 2012 and 2013 versus 2014 were compared. Comparison of the 2 time periods reveals that TAVR patients remain elderly (mean age 82 years), with multiple comorbidities, reflected by a high mean STS predicted risk of mortality (STS PROM) for surgical valve replacement (8.34%), were highly symptomatic (New York Heart Association functional class III/IV in 82.5%), frail (slow 5-m walk test in 81.6%), and have poor self-reported health status (median baseline Kansas City Cardiomyopathy Questionnaire score of 39.1). Procedure performance is changing, with an increased use of moderate sedation (from 1.6% to 5.1%) and increase in femoral access using percutaneous techniques (66.8% in 2014). Vascular complication rates are decreasing (from 5.6% to 4.2%), whereas site-reported stroke rates remain stable at 2.2%. The TVT Registry provides important information on characteristics and outcomes of TAVR in contemporary U.S. clinical practice. It can be used to identify trends in practice and opportunities for quality improvement.

Evaluating the completeness of the national ALS registry, United States.

Science.gov (United States)

Kaye, Wendy E; Wagner, Laurie; Wu, Ruoming; Mehta, Paul

2018-02-01

Our objective was to evaluate the completeness of the United States National ALS Registry (Registry). We compared persons with ALS who were passively identified by the Registry with those actively identified in the State and Metropolitan Area ALS Surveillance project. Cases in the two projects were matched using a combination of identifiers, including, partial social security number, name, date of birth, and sex. The distributions of cases from the two projects that matched/did not match were compared and Chi-square tests conducted to determine statistical significance. There were 5883 ALS cases identified by the surveillance project. Of these, 1116 died before the Registry started, leaving 4767 cases. We matched 2720 cases from the surveillance project to those in the Registry. The cases identified by the surveillance project that did not match cases in the Registry were more likely to be non-white, Hispanic, less than 65 years of age, and from western states. The methods used by the Registry to identify ALS cases, i.e. national administrative data and self-registration, worked well but missed cases. These findings suggest that developing strategies to identify and promote the Registry to those who were more likely to be missing, e.g. non-white and Hispanic, could be beneficial to improving the completeness of the Registry.

Housing and Employment Outcomes for Mental Health Self-Direction Participants.

Science.gov (United States)

Croft, Bevin; İsvan, Nilüfer; Parish, Susan L; Mahoney, Kevin J

2018-05-15

In self-direction, participants control individual budgets, allocating service dollars according to needs and preferences within program parameters to meet self-defined recovery goals. Mental health self-direction is associated with enhanced wellness and recovery outcomes at lower or similar cost than traditional service arrangements. This study compared outcomes of housing independence and employment between individuals who participated in self-direction and those who did not. This quasi-experimental study involved administrative data from 271 self-directing participants. Using coarsened exact matching with observed demographic, diagnostic, and other characteristics, the authors constructed a comparison group of non-self-directing individuals (N=1,099). The likelihood of achieving positive outcomes between first and last assessments during the approximately four-year study period was compared for self-directing and non-self-directing individuals. Self-directing participants were more likely than nonparticipants to increase days worked for pay or maintain days worked at 20 or more days in the past 30 days (number needed to treat [NNT]=18; small effect size) and maintain or attain independent housing (NNT=16; small effect size), when analyses controlled, to the extent possible, for observed individual characteristics. Based on data from the nation's largest and longest-standing program of its kind, results suggest that mental health self-direction is associated with modest improvements or maintenance of positive outcomes in employment and housing independence. This research adds to the literature examining self-direction in the context of mental health and begins to fill the need for a greater understanding of self-direction's relationship to outcomes of interest to service users and families, providers, and system administrators.

Statewide Quality Improvement Initiative to Reduce Early Elective Deliveries and Improve Birth Registry Accuracy.

Science.gov (United States)

Kaplan, Heather C; King, Eileen; White, Beth E; Ford, Susan E; Fuller, Sandra; Krew, Michael A; Marcotte, Michael P; Iams, Jay D; Bailit, Jennifer L; Bouchard, Jo M; Friar, Kelly; Lannon, Carole M

2018-04-01

To evaluate the success of a quality improvement initiative to reduce early elective deliveries at less than 39 weeks of gestation and improve birth registry data accuracy rapidly and at scale in Ohio. Between February 2013 and March 2014, participating hospitals were involved in a quality improvement initiative to reduce early elective deliveries at less than 39 weeks of gestation and improve birth registry data. This initiative was designed as a learning collaborative model (group webinars and a single face-to-face meeting) and included individual quality improvement coaching. It was implemented using a stepped wedge design with hospitals divided into three balanced groups (waves) participating in the initiative sequentially. Birth registry data were used to assess hospital rates of nonmedically indicated inductions at less than 39 weeks of gestation. Comparisons were made between groups participating and those not participating in the initiative at two time points. To measure birth registry accuracy, hospitals conducted monthly audits comparing birth registry data with the medical record. Associations were assessed using generalized linear repeated measures models accounting for time effects. Seventy of 72 (97%) eligible hospitals participated. Based on birth registry data, nonmedically indicated inductions at less than 39 weeks of gestation declined in all groups with implementation (wave 1: 6.2-3.2%, Pinitiative, they saw significant decreases in rates of early elective deliveries as compared with wave 3 (control; P=.018). All waves had significant improvement in birth registry accuracy (wave 1: 80-90%, P=.017; wave 2: 80-100%, P=.002; wave 3: 75-100%, Pinitiative enabled statewide spread of change strategies to decrease early elective deliveries and improve birth registry accuracy over 14 months and could be used for rapid dissemination of other evidence-based obstetric care practices across states or hospital systems.

Self-reported quality of ADL task performance among patients with COPD exacerbations.

Science.gov (United States)

Bendixen, Hans Jørgen; Wæhrens, Eva Ejlersen; Wilcke, Jon Torgny; Sørensen, Lisbeth Villemoes

2014-07-01

Patients suffering from chronic obstructive pulmonary disease (COPD) experience problems in the performance of activities of daily living (ADL) tasks. The objective was to examine the self-reported quality of ADL task performance among COPD patients, and to investigate whether age, gender, and routine COPD characteristics correlate with the self-reported ADL ability. Eighty patients admitted to hospital with COPD exacerbations participated. In a cross-sectional study, the patients' self-reported ADL ability was assessed using the ADL-Interview (ADL-I) instrument. Data concerning age, gender, and routine COPD characteristics were drawn from the patients' medical records. The patients reported being inefficient to markedly inefficient when performing ADL tasks within the personal hygiene, toileting, dressing, household, mobility, and transportation domains. While more than 90% of the participants reported increased effort and/or fatigue when performing the ADL tasks, up to 88% of the participants relied on help from others in the performance of general household chores like cooking and shopping. Self-reported ADL ability did not correlate with age, gender, or routine COPD characteristics. Decreased quality of ADL task performance seemed to be extremely common among COPD patients. Therefore, addressing the problems in individually tailored pulmonary rehabilitation programmes may be advantageous.

Long-Term Safety and Effectiveness of Adalimumab for Moderate to Severe Psoriasis: Results from 7-Year Interim Analysis of the ESPRIT Registry.

Science.gov (United States)

Menter, Alan; Thaçi, Diamant; Wu, Jashin J; Abramovits, William; Kerdel, Francisco; Arikan, Dilek; Guo, Dianlin; Ganguli, Arijit; Bereswill, Mareike; Camez, Anne; Valdecantos, Wendell C

2017-09-01

ESPRIT (NCT00799877) is an ongoing 10-year international prospective observational registry evaluating the long-term safety and effectiveness of originator adalimumab in routine clinical practice for adult patients with chronic plaque psoriasis. Herein, we report the long-term safety, effectiveness, and patient-reported outcomes (PROs) following adalimumab treatment over the first 7 years of the ESPRIT registry. All treatment-emergent (All-TE) adverse events (AE) since the initial (first ever) dose of adalimumab were assessed. Physician Global Assessment (PGA) and PROs (PROs for US patients only) were evaluated during registry participation. As of 30 November 2015, 6051 patients in the ESPRIT registry were analyzed, representing 23,660.1 patient-years (PY) of overall adalimumab exposure. The incidence rates for All-TE serious AEs, serious infections, and malignancies were 4.4, 1.0, and 1.0 events per 100 PY (E/100PY), respectively. The standardized mortality ratio for TE deaths in the registry was 0.27 (95% CI 0.18-0.38). During the registry's first 7 years, PGA "clear" or "minimal" was achieved by >50% of patients at each annual visit, and among US patients, the mean improvement from baseline in different PROs was maintained. No new safety signals were identified during the first 7 years of the registry, and safety was consistent with the known safety profile of adalimumab. The number of TE deaths was below the expected rate. During the registry's first 7 years, most of the patients remained free of All-TE cardiovascular events, serious infections, and malignancy. As-observed effectiveness of adalimumab and improvements from baseline in PROs were maintained through 7 years of registry participation. Abbvie. ClinicalTrials.gov identifier, NCT00799877.

Patient reported outcomes in hip arthroplasty registries.

Science.gov (United States)

Paulsen, Aksel

2014-05-01

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

Developing a caries risk registry to support caries risk assessment and management for children: A quality improvement initiative.

Science.gov (United States)

Ruff, Jesley C; Herndon, Jill Boylston; Horton, Roger A; Lynch, Julie; Mathwig, Dawn C; Leonard, Audra; Aravamudhan, Krishna

2017-10-27

Health registries are commonly used in medicine to support public health activities and are increasingly used in quality improvement (QI) initiatives. Illustrations of dental registries and their QI applications are lacking. Within dentistry, caries risk assessment implementation and documentation are vital to optimal patient care. The purpose of this article is to describe the processes used to develop a caries risk assessment registry as a QI initiative to support clinical caries risk assessment, caries prevention, and disease management for children. Developmental steps reflected Agency for Healthcare Research and Quality recommendations for planning QI registries and included engaging "champions," defining the project, identifying registry features, defining performance dashboard indicators, and pilot testing with participant feedback. We followed Standards for Quality Improvement Reporting Excellence guidelines. Registry eligibility is patients aged 0-17 years. QI tools include prompts to register eligible patients; decision support tools grounded in evidence-based guidelines; and performance dashboard reports delivered at the provider and aggregated levels at regular intervals. The registry was successfully piloted in two practices with documented caries risk assessment increasing from 57 percent to 92 percent and positive feedback regarding the potential to improve dental practice patient centeredness, patient engagement and education, and quality of care. The caries risk assessment registry demonstrates how dental registries may be used in QI efforts to promote joint patient and provider engagement, foster shared decision making, and systematically collect patient information to generate timely and actionable data to improve care quality and patient outcomes at the individual and population levels. © 2017 American Association of Public Health Dentistry.

The European Registry for Patients with Mechanical Circulatory Support (EUROMACS) of the European Association for Cardio-Thoracic Surgery (EACTS)

DEFF Research Database (Denmark)

de By, Theo M M H; Mohacsi, Paul; Gahl, Brigitta

2018-01-01

of clinicians and scientists. This report includes updates of patient characteristics, implant frequency, mortality rates and adverse events. RESULTS: Fifty-two hospitals participated in the registry. This report is based on 2947 registered implants in 2681 patients. Survival of adult patients (>17 years of age...

Validity and reliability of self-reported diabetes in the Atherosclerosis Risk in Communities Study.

Science.gov (United States)

Schneider, Andrea L C; Pankow, James S; Heiss, Gerardo; Selvin, Elizabeth

2012-10-15

The objective of this study was to assess the validity of prevalent and incident self-reported diabetes compared with multiple reference definitions and to assess the reliability (repeatability) of a self-reported diagnosis of diabetes. Data from 10,321 participants in the Atherosclerosis Risk in Communities (ARIC) Study who attended visit 4 (1996-1998) were analyzed. Prevalent self-reported diabetes was compared with reference definitions defined by fasting glucose and medication use obtained at visit 4. Incident self-reported diabetes was assessed during annual follow-up telephone calls and was compared with reference definitions defined by fasting glucose, hemoglobin A1c, and medication use obtained during an in-person visit attended by a subsample of participants (n = 1,738) in 2004-2005. The sensitivity of prevalent self-reported diabetes ranged from 58.5% to 70.8%, and specificity ranged from 95.6% to 96.8%, depending on the reference definition. Similarly, the sensitivity of incident self-reported diabetes ranged from 55.9% to 80.4%, and specificity ranged from 84.5% to 90.6%. Percent positive agreement of self-reported diabetes during 9 years of repeat assessments ranged from 92.7% to 95.4%. Both prevalent self-reported diabetes and incident self-reported diabetes were 84%-97% specific and 55%-80% sensitive as compared with reference definitions using glucose and medication criteria. Self-reported diabetes was >92% reliable over time.

Adolescent Self-Reported and Peer-Reported Self-Esteem.

Science.gov (United States)

O'Donnell, William James

1979-01-01

The study is an examination of the relationship between adolescents' self-reported and peer-reported self-esteem and how this relationship is affected by sex, race, and age variables. Significant sex and race variations interacted with age. Explanatory hypotheses for these findings are given. (Author/KC)

Self-reported Quality of ADL Task Performance in Adults with Schizophrenia

DEFF Research Database (Denmark)

Nielsen, Kristina Tomra; Petersen, Rikke S.; Wæhrens, Eva Ejlersen

quality of both personal ADL (PADL) and instrumental ADL (IADL). Aside from decreased independence, the participants also reported problems related to increased effort, increased use of time, and some safety issues. Although most of the participants reported to be competent in relation to PADL tasks......, how they perceive the quality of their performance in terms of effort/fatigue, use of time, safety risks, and need for assistance. The aim was to investigate the self-reported quality of ADL task performance in adults with schizophrenia. Subjects Participants were recruited from October 2013...... evaluation tool developed to describe and measure the quality of ADL task performance in terms of effort/fatigue, use of time, safety risks, and need for assistance based on self-report. Occupational therapists employed at the hospitals and trained in conducting the ADL–I were collecting data. The interviews...

Self-reported exercise and longitudinal outcomes in cystic fibrosis: a retrospective cohort study.

Science.gov (United States)

Collaco, Joseph M; Blackman, Scott M; Raraigh, Karen S; Morrow, Christopher B; Cutting, Garry R; Paranjape, Shruti M

2014-10-06

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.

Assessing the Accuracy of Self-Reported Self-Talk

Directory of Open Access Journals (Sweden)

Thomas M. Brinthaupt

2015-05-01

Full Text Available Self-Talk Scale (STS; Brinthaupt, Hein, & Kramer, 2009 is a self-report measure of self-talk frequency that has been shown to possess acceptable reliability and validity. However, no research using the STS has examined the accuracy of respondents’ self-reports. In the present paper, we report a series of studies directly examining the measurement of self-talk frequency and functions using the STS. The studies examine ways to validate self-reported self-talk by (1 comparing STS responses from 6 weeks earlier to recent experiences that might precipitate self-talk, (2 using experience sampling methods to determine whether STS scores are related to recent reports of self-talk over a period of a week, and (3 comparing self-reported STS scores to those provided by a significant other who rated the target on the STS. Results showed that (1 overall self-talk scores, particularly self-critical and self-reinforcing self-talk, were significantly related to reports of context-specific self-talk; (2 high STS scorers reported talking to themselves significantly more often during recent events compared to low STS scorers, and, contrary to expectations, (3 friends reported less agreement than strangers in their self-other self-talk ratings. Implications of the results for the validity of the STS and for measuring self-talk are presented.

Feasibility of 4 patient-reported outcome measures in a registry setting

DEFF Research Database (Denmark)

Paulsen, Aksel; Pedersen, Alma Becic; Overgaard, Søren

2012-01-01

Background and purpose Feasibility is an important parameter when choosing which patient-reported outcomes (PRO) to use in a study. We assessed the feasibility of PROs in a hip registry setting. Methods Primary total hip arthroplasty (THA) patients (n = 5,747) who had been operated on 1-2, 5.......1% to 46%, respectively. Missing items ranged from 1.2% to 3.4%, and 0.8-4.3% required manual validation (p analysis, depending on descriptive factor and choice of PRO. Interpretation All 4 PROs fulfilled...

Validation of self-reported cellular phone use

DEFF Research Database (Denmark)

Samkange-Zeeb, Florence; Berg, Gabriele; Blettner, Maria

2004-01-01

BACKGROUND: In recent years, concern has been raised over possible adverse health effects of cellular telephone use. In epidemiological studies of cancer risk associated with the use of cellular telephones, the validity of self-reported cellular phone use has been problematic. Up to now there is ......BACKGROUND: In recent years, concern has been raised over possible adverse health effects of cellular telephone use. In epidemiological studies of cancer risk associated with the use of cellular telephones, the validity of self-reported cellular phone use has been problematic. Up to now...... there is very little information published on this subject. METHODS: We conducted a study to validate the questionnaire used in an ongoing international case-control study on cellular phone use, the "Interphone study". Self-reported cellular phone use from 68 of 104 participants who took part in our study...... was compared with information derived from the network providers over a period of 3 months (taken as the gold standard). RESULTS: Using Spearman's rank correlation, the correlation between self-reported phone use and information from the network providers for cellular phone use in terms of the number of calls...

The agreement between self-reported cervical smear abnormalities and screening programme records.

Science.gov (United States)

Canfell, Karen; Beral, Valerie; Green, Jane; Cameron, Rebecca; Baker, Krys; Brown, Anna

2006-01-01

The Million Women Study is a cohort study of women aged 50-64 years in England and Scotland. As a component of the follow-up questionnaire, participants were asked to indicate if they had an abnormal cervical smear in the previous five years. This study compared self-reported cervical abnormalities with screening records obtained from the National Health Service Cervical Screening Programme. For 1944 randomly selected Million Women Study participants in Oxfordshire, screening records were assessed over a six-year period prior to the date of self-reporting. The six-year period was chosen to allow for errors in the recall of timing of abnormal smears. A total of 68 women (3.5%) had a record of at least one equivocal or abnormal smear within the last six years, whereas 49 women (2.5%) self-reported an abnormality. There was a strong trend for an increased probability of self-reporting a history of an abnormal smear as the severity of the recorded abnormality increased (P screening programme records show an abnormal smear, the proportion self-reporting an abnormality increases with the severity of the recorded lesion. Almost all women with a record of negative or inadequate smear(s) correctly interpret the result and do not self-report an abnormality.

Self-entrustment: how trainees' self-regulated learning supports participation in the workplace.

Science.gov (United States)

Sagasser, Margaretha H; Kramer, Anneke W M; Fluit, Cornelia R M G; van Weel, Chris; van der Vleuten, Cees P M

2017-10-01

Clinical workplaces offer postgraduate trainees a wealth of opportunities to learn from experience. To promote deliberate and meaningful learning self-regulated learning skills are foundational. We explored trainees' learning activities related to patient encounters to better understand what aspects of self-regulated learning contribute to trainees' development, and to explore supervisor's role herein. We conducted a qualitative non-participant observational study in seven general practices. During two days we observed trainee's patient encounters, daily debriefing sessions and educational meetings between trainee and supervisor and interviewed them separately afterwards. Data collection and analysis were iterative and inspired by a phenomenological approach. To organise data we used networks, time-ordered matrices and codebooks. Self-regulated learning supported trainees to increasingly perform independently. They engaged in self-regulated learning before, during and after encounters. Trainees' activities depended on the type of medical problem presented and on patient, trainee and supervisor characteristics. Trainees used their sense of confidence to decide if they could manage the encounter alone or if they should consult their supervisor. They deliberately used feedback on their performance and engaged in reflection. Supervisors appeared vital in trainees' learning by reassuring trainees, discussing experience, knowledge and professional issues, identifying possible unawareness of incompetence, assessing performance and securing patient safety. Self-confidence, reflection and feedback, and support from the supervisor are important aspects of self-regulated learning in practice. The results reflect how self-regulated learning and self-entrustment promote trainees' increased participation in the workplace. Securing organized moments of interaction with supervisors is beneficial to trainees' self-regulated learning.

Pre-vaccination care-seeking in females reporting severe adverse reactions to HPV vaccine. A registry based case-control study

DEFF Research Database (Denmark)

Mølbak, Kåre; Hansen, Niels Dalum; Valentiner-Branth, Palle

2016-01-01

to the DMA of suspected severe adverse reactions.We selected controls without reports of adverse reactions from the Danish vaccination registry and matched by year of vaccination, age of vaccination, and municipality, and obtained from the Danish National Patient Registry and The National Health Insurance...... vaccination programme has declined. The aim of the present study was to determine health care-seeking prior to the first HPV vaccination among females who suspected adverse reactions to HPV vaccine. Methods In this registry-based case-control study, we included as cases vaccinated females with reports...... Service Register the history of health care usage two years prior to the first vaccine. We analysed the data by logistic regression while adjusting for the matching variables. Results The study included 316 cases who received first HPV vaccine between 2006 and 2014. Age range of cases was 11 to 52 years...

Melanoma reporting to central cancer registries by US dermatologists: an analysis of the persistent knowledge and practice gap.

Science.gov (United States)

Cartee, Todd V; Kini, Seema P; Chen, Suephy C

2011-11-01

Every state requires diagnosing physicians to report new cases of melanoma to its central cancer registry. Previous regional studies and anecdotal experience suggest that few dermatologists are cognizant of this obligation. This oversight could result in a large number of unreported melanomas annually and, in turn, US melanoma statistics that markedly underestimate the true incidence of the disease. We sought to quantify the percentage of dermatologists who are unaware of melanoma reporting requirements (the knowledge gap) and who are not reporting melanoma diagnoses (the practice gap). We also sought to delineate factors predictive of reporting knowledge and behavior. A survey was administered to attendees of the Cutaneous Oncology Symposium at the 2010 American Academy of Dermatology annual meeting. In all, 104 of 419 eligible attendees completed surveys (response rate 26%). Fifty percent of respondents do not believe they are required to report melanomas and 56% do not actively report their diagnoses to a registry. Practice duration of less than 10 years was significantly associated with both a knowledge gap (P = .047) and practice gap (P = .056). Similarly, dermatologists who diagnosed fewer than 10 melanomas per year were more likely to possess a knowledge gap (P = .096) and a practice gap (P = .087) than those who diagnosed more than 10. Limitations include small sample size and low response rate. A majority of dermatologists are not reporting melanomas they diagnose to a cancer registry, and half of those surveyed were not aware that diagnosing physicians are required to report melanoma. Copyright © 2011 American Academy of Dermatology, Inc. Published by Mosby, Inc. All rights reserved.

Cross-sectional study of characteristics of clinical registries in Australia: a resource for clinicians and policy makers.

Science.gov (United States)

Md Emdadul Hoque, Dewan; Ruseckaite, Rasa; Lorgelly, Paula; McNeil, John J; Evans, Sue M

2018-04-01

To investigate the attributes of Australian clinical quality registries (CQR). Survey of 40 CQRs between September 2015 and April 2016. CQR lead investigators/project managers. None. Registry organization, geographical coverage, data quality, management, characteristics, output and outcomes. Of those who responded (34/40; 85.0%), 12 (34.3%) were binational (Australia and New Zealand); 22 (64.7%) were Australian-only registries; and 13 (38.2%) had national coverage. CQRs covered critical care, infection control, cardiovascular diseases, cancer, chronic diseases, procedures and devices, and transplants. Overall, 24/34 CQRs (70.6%) were public sector funded. In total, 14 (41.2%) scored >75% on a composite score developed to assess data quality. Overall, 29/34 (85.3%) produced an annual multi-centred report; only 15/34 (44.1%) produced provider-specific reports. Mortality/survival and quality of life were collected by 82.4 and 32.4% of CQRs, respectively. Most CQRs displayed data in bar/column charts (28/34, 82.4%) and funnel plots (17/34, 50%). Most CQRs adopted an opt-out consent process (n = 17/31; 54.8%). Linear regression indicated that longer duration of CQR was associated with higher data quality (>20 vs 0-5 years coefficient = 4.76, 95% CI: 0.26, 9.26). Opt-in consent was associated with lower data quality (no active consent vs opt-in approval method, coefficient = -5.22, 95% CI: -8.71, -1.72). Six CQRs self-reported having undertaken an economic evaluation of their registry. CQRs varied in geographical coverage; stage of development, approach to recruitment; method and frequency of reporting their output; and data quality assurance. An accreditation system for CQRs would likely assist in recognizing high-quality registries.

The Spectrum of Glomerulonephritis in Saudi Arabia: The Results of the Saudi Registry

Directory of Open Access Journals (Sweden)

Huraib S

2000-01-01

Full Text Available Only few studies regarding glomerulonephritis, with relatively small numbers of patients, have so far been published from different centers in Saudi Arabia, and have reported conflicting results regarding the patterns, even in the same city. The possible reasons for these differences include the small number of patients in the different studies, differences in the indications for renal biopsies, referral bias, geographical differences, and, sometimes, the non-availability of the necessary diagnostic facilities in the reporting centers. In order to overcome these problems, a registry for glomerulonephropathy was attempted in Saudi Arabia. Six large referral hospitals from different regions of Saudi Arabia participated in this registry. Biopsy reports and clinical information of 1294 renal biopsies were obtained. There were 782 renal biopsies due to glomerulonephritis (GN accounting for 77.2% of the total biopsies. Five hundred eighty seven (72.6% were primary glomerulonephritidis. Focal and segmental glomerulosclerosis (FSGS (21.3% and membrano-proliferative glomerulonephritis (MPGN (20.7% were the most common types found in the primary glomerulonephritidis. Membranous glomerulonephritis (MGN was present in only 10.6% of the cases. IgA nephropathy was found in 6.5% of the cases. Of the secondary glomerulo-nephritides, systemic lupus erythematosus (SLE was the most common indication for biopsy (57.0% and amyloidosis was found in only 3.2% of the biopsies. In conclusion, FSGS and MPGN were the most common forms of primary glomerulonephritis in adult patients in Saudi Arabia. MGN was not as common as in the western world. SLE was the commonest cause of secondary GN. Amyloidosis was not as common as in other Arab countries. There is a need for more centers from Saudi Arabia to join this national GN registry. Similar registries can be established in different Arab countries, which all would, hopefully, lead to a Pan-Arab GN registry.

Monitoring, documenting and reporting the quality of antibiotic use in the Netherlands: a pilot study to establish a national antimicrobial stewardship registry

NARCIS (Netherlands)

Berrevoets, M.A.H.; Oever, J. ten; Sprong, T.; Hest, R.M. van; Groothuis, I.; Heijl, I. van; Schouten, J.A.; Hulscher, M.E.J.L.; Kullberg, B.J.

2017-01-01

BACKGROUND: The Dutch Working Party on Antibiotic Policy is developing a national antimicrobial stewardship registry. This registry will report both the quality of antibiotic use in hospitals in the Netherlands and the stewardship activities employed. It is currently unclear which aspects of the

eRegistries: Electronic registries for maternal and child health.

Science.gov (United States)

Frøen, J Frederik; Myhre, Sonja L; Frost, Michael J; Chou, Doris; Mehl, Garrett; Say, Lale; Cheng, Socheat; Fjeldheim, Ingvild; Friberg, Ingrid K; French, Steve; Jani, Jagrati V; Kaye, Jane; Lewis, John; Lunde, Ane; Mørkrid, Kjersti; Nankabirwa, Victoria; Nyanchoka, Linda; Stone, Hollie; Venkateswaran, Mahima; Wojcieszek, Aleena M; Temmerman, Marleen; Flenady, Vicki J

2016-01-19

The Global Roadmap for Health Measurement and Accountability sees integrated systems for health information as key to obtaining seamless, sustainable, and secure information exchanges at all levels of health systems. The Global Strategy for Women's, Children's and Adolescent's Health aims to achieve a continuum of quality of care with effective coverage of interventions. The WHO and World Bank recommend that countries focus on intervention coverage to monitor programs and progress for universal health coverage. Electronic health registries - eRegistries - represent integrated systems that secure a triple return on investments: First, effective single data collection for health workers to seamlessly follow individuals along the continuum of care and across disconnected cadres of care providers. Second, real-time public health surveillance and monitoring of intervention coverage, and third, feedback of information to individuals, care providers and the public for transparent accountability. This series on eRegistries presents frameworks and tools to facilitate the development and secure operation of eRegistries for maternal and child health. In this first paper of the eRegistries Series we have used WHO frameworks and taxonomy to map how eRegistries can support commonly used electronic and mobile applications to alleviate health systems constraints in maternal and child health. A web-based survey of public health officials in 64 low- and middle-income countries, and a systematic search of literature from 2005-2015, aimed to assess country capacities by the current status, quality and use of data in reproductive health registries. eRegistries can offer support for the 12 most commonly used electronic and mobile applications for health. Countries are implementing health registries in various forms, the majority in transition from paper-based data collection to electronic systems, but very few have eRegistries that can act as an integrating backbone for health

Evolution of Self-Reporting Methods for Identifying Discrete Emotions in Science Classrooms

Science.gov (United States)

Ritchie, Stephen M.; Hudson, Peter; Bellocchi, Alberto; Henderson, Senka; King, Donna; Tobin, Kenneth

2016-01-01

Emotion researchers have grappled with challenging methodological issues in capturing emotions of participants in naturalistic settings such as school or university classrooms. Self-reporting methods have been used frequently, yet these methods are inadequate when used alone. We argue that the self-reporting methods of emotion diaries and…

Validating self-report of diabetes use by participants in the 45 and up study: a record linkage study

Science.gov (United States)

2013-01-01

Background Prevalence studies usually depend on self-report of disease status in survey data or administrative data collections and may over- or under-estimate disease prevalence. The establishment of a linked data collection provided an opportunity to explore the accuracy and completeness of capture of information about diabetes in survey and administrative data collections. Methods Baseline questionnaire data at recruitment to the 45 and Up Study was obtained for 266,848 adults aged 45 years and over sampled from New South Wales, Australia in 2006–2009, and linked to administrative data about hospitalisation from the Admitted Patient Data Collection (APDC) for 2000–2009, claims for medical services (MBS) and pharmaceuticals (PBS) from Medicare Australia data for 2004–2009. Diabetes status was determined from response to a question ‘Has a doctor EVER told you that you have diabetes’ (n = 23,981) and augmented by examination of free text fields about diagnosis (n = 119) or use of insulin (n = 58). These data were used to identify the sub-group with type 1 diabetes. We explored the agreement between self-report of diabetes, identification of diabetes diagnostic codes in APDC data, claims for glycosylated haemoglobin (HbA1c) in MBS data, and claims for dispensed medication (oral hyperglycaemic agents and insulin) in PBS data. Results Most participants with diabetes were identified in APDC data if admitted to hospital (79.3%), in MBS data with at least one claim for HbA1c testing (84.7%; 73.4% if 2 tests claimed) or in PBS data through claim for diabetes medication (71.4%). Using these alternate data collections as an imperfect ‘gold standard’ we calculated sensitivities of 83.7% for APDC, 63.9% (80.5% for two tests) for MBS, and 96.6% for PBS data and specificities of 97.7%, 98.4% and 97.1% respectively. The lower sensitivity for HbA1c may reflect the use of this test to screen for diabetes suggesting that it is less useful in identifying

An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry

Directory of Open Access Journals (Sweden)

Len Woodward

2016-11-01

Full Text Available Abstract Background Patients are becoming increasingly involved in research which can promote innovation through novel ideas, support patient-centred actions, and facilitate drug development. For rare diseases, registries that collect data from patients can increase knowledge of the disease’s natural history, evaluate clinical therapies, monitor drug safety, and measure quality of care. The active participation of patients is expected to optimise rare-disease management and improve patient outcomes. However, few reports address the type and frequency of interactions involving patients, and what research input patient groups have. Here, we describe a collaboration between an international group of patient organisations advocating for patients with atypical haemolytic uraemic syndrome (aHUS, the aHUS Alliance, and an international aHUS patient registry (ClinicalTrials.gov NCT01522183. Results The aHUS Registry Scientific Advisory Board (SAB invited the aHUS Alliance to submit research ideas important to patients with aHUS. This resulted in 24 research suggestions from patients and patient organisations being presented to the SAB. The proposals were classified under seven categories, the most popular of which were understanding factors that cause disease manifestations and learning more about the clinical and psychological/social impact of living with the disease. Subsequently, aHUS Alliance members voted for up to five research priorities. The top priority was: “What are the outcomes of a transplant without eculizumab and what non-kidney damage is likely in patients with aHUS?”. This led directly to the initiation of an ongoing analysis of the data collected in the Registry on patients with kidney transplants. Conclusion This collaboration resulted in several topics proposed by the aHUS Alliance being selected as priority activities for the aHUS Registry, with one new analysis already underway. A clear pathway was established for engagement

Validity and reproducibility of self-reported working hours among Japanese male employees

OpenAIRE

Imai, Teppei; Kuwahara, Keisuke; Miyamoto, Toshiaki; Okazaki, Hiroko; Nishihara, Akiko; Kabe, Isamu; Mizoue, Tetsuya; Dohi, Seitaro

2016-01-01

Objective: Working long hours is a potential health hazard. Although self-reporting of working hours in various time frames has been used in epidemiologic studies, its validity is unclear. The objective of this study was to examine the validity and reproducibility of self-reported working hours among Japanese male employees. Methods: The participants were 164 male employees of four large-scale companies in Japan. For validity, the Spearman correlation between self-reported working hours in th...

Self-reported cognitive inconsistency in older adults.

Science.gov (United States)

Vanderhill, Susan; Hultsch, David F; Hunter, Michael A; Strauss, Esther

2010-01-01

Insight into one's own cognitive abilities, or metacognition, has been widely studied in developmental psychology. Relevance to the clinician is high, as memory complaints in older adults show an association with impending dementia, even after controlling for likely confounds. Another candidate marker of impending dementia under study is inconsistency in cognitive performance over short time intervals. Although there has been a recent proliferation of studies of cognitive inconsistency in older adults, to date, no one has examined adults' self-perceptions of cognitive inconsistency. Ninety-four community-dwelling older adults (aged 70-91) were randomly selected from a parent longitudinal study of short-term inconsistency and long-term cognitive change in aging. Participants completed a novel 40-item self-report measure of everyday cognitive inconsistency, including parallel scales indexing perceived inconsistency 5 years ago and at present, yielding measures of past, present, and 5-year change in inconsistency. The questionnaire showed acceptable psychometric characteristics. The sample reported an increase in perceived inconsistency over time. Higher reported present inconsistency and greater 5-year increase in inconsistency were associated with noncognitive (e.g., older age, poorer ADLs, poorer health, higher depression), metacognitive (e.g., poorer self-rated memory) and neuropsychological (e.g., poorer performance and greater 5-year decline in global cognitive status, vocabulary, and memory) measures. Correlations between self-reported inconsistency and neuropsychological performance were attenuated, but largely persisted when self-rated memory and age were controlled. Observed relationships between self-reported inconsistency and measures of neuropsychological (including memory) status and decline suggest that self-perceived inconsistency may be an area of relevance in evaluating older adults for memory disorders.

Monitoring, documenting and reporting the quality of antibiotic use in the Netherlands: a pilot study to establish a national antimicrobial stewardship registry

NARCIS (Netherlands)

Berrevoets, Marvin Ah; ten Oever, Jaap; Sprong, Tom; van Hest, Reinier M.; Groothuis, Ingeborg; van Heijl, Inger; Schouten, Jeroen A.; Hulscher, Marlies E.; Kullberg, Bart-Jan

2017-01-01

The Dutch Working Party on Antibiotic Policy is developing a national antimicrobial stewardship registry. This registry will report both the quality of antibiotic use in hospitals in the Netherlands and the stewardship activities employed. It is currently unclear which aspects of the quality of

The relationship between self-reported oral health, self-regulation, proactive coping, procrastination and proactive attitude.

Science.gov (United States)

Dumitrescu, A L; Dogaru, B C; Dogaru, C D; Manolescu, B

2011-06-01

This cross-sectional study investigated the relationship between self-regulation, proactive coping, procrastination and proactive attitude, perceived oral health and self-reported oral-health behaviours. The study sample consisted of 198 first year medical students. The questionnaire included information about socio-demographic factors, behavioural variables, self-reported oral health status, proactive coping (proactive coping subscale of the Proactive Coping Inventory), procrastination (Procrastination Scale) and proactive attitude (Proactive Attitude Scale). Significant differences were found on self-regulation, proactive coping, procrastination and proactive attitude scales between participants who rated their gingival condition as very good/excellent and those who evaluated it as being poor, very poor or normal (p procrastination level among individuals who never visit their dentist and those who visit their dentist for check-up or for tooth cleaning and scaling (p = 0.001) or when treatment is needed or when in pain (p procrastination and proactive coping are important determinants of perceived oral health and self-reported oral-health behaviours.

Impact of pediatric burn camps on participants' self esteem and body image: an empirical study.

Science.gov (United States)

Bakker, Anne; Van der Heijden, Peter G M; Van Son, Maarten J M; Van de Schoot, Rens; Van Loey, Nancy E E

2011-12-01

This study focuses on possible effects of specialized summer camps on young burn survivors' self esteem and body image. Quantitative as well as qualitative measures was used. To study possible effects, a pretest-posttest comparison group design with a follow-up was employed. Self-report questionnaires were used to measure self esteem and body image in a burn camp group (n=83, 8-18 years) and in a comparison group of children with burns who did not attend a burn camp during the course of the study (n=90, 8-18 years). Additionally, burn camp participants and parents completed an evaluation form about benefits derived from burn camp. A small positive short-term effect of burn camp participation was found on the 'satisfaction with appearance' component of body image. Overall, participants and parents showed high appreciation of the burn camps and reported several benefits, particularly concerning meeting other young burn survivors. Albeit statistically modest, this is the first quantitative study to document on a significant short-term impact of burn camp on young burn survivors' body image. Implications of this result for future research and burn camp organization were discussed, including the strengths of residential camps for young burn survivors. Copyright © 2011 Elsevier Ltd and ISBI. All rights reserved.

Statistical aspects of tumor registries, Hiroshima and Nagasaki

Energy Technology Data Exchange (ETDEWEB)

Ishida, M

1961-02-24

Statistical considerations are presented on the tumor registries established for purpose of studying radiation induced carcinoma in Hiroshima and Nagasaki by observing tumors developing in the survivors of these cities. In addition to describing the background and purpose of the tumor registries the report consists of two parts: (1) accuracy of reported tumor cases and (2) statistical aspects of the incidence of tumors based both on a current population and on a fixed sample. Under the heading background, discussion includes the difficulties in attaining complete registration; the various problems associated with the tumor registries; and the special characteristics of tumor registries in Hiroshima and Nagasaki. Beye's a posteriori probability formula was applied to the Type I and Type II errors in the autopsy data of Hiroshima ABCC. (Type I, diagnosis of what is not cancer as cancer; Type II, diagnosis of what is cancer as noncancer.) Finally, the report discussed the difficulties in estimating a current population of survivors; the advantages and disadvantages of analyses based on a fixed sample and on an estimated current population; the comparison of incidence rates based on these populations using the 20 months' data of the tumor registry in Hiroshima; and the sample size required for studying radiation induced carcinoma. 10 references, 1 figure, 8 tables.

How well do radiographic, clinical and self-reported diagnoses of knee osteoarthritis agree? Findings from the Hertfordshire cohort study.

Science.gov (United States)

Parsons, Camille; Clynes, Michael; Syddall, Holly; Jagannath, Darshan; Litwic, Anna; van der Pas, Suzan; Cooper, Cyrus; Dennison, Elaine M; Edwards, Mark H

2015-01-01

Epidemiological studies of knee osteoarthritis (OA) have often used a radiographic definition. However, the clinical syndrome of OA is influenced by a broad range of factors in addition to the structural changes required for radiographic OA. Hence more recently several studies have adopted a clinical or self-reported approach to OA diagnosis rather than a radiographic approach. The aim of this study was to investigate agreement between radiographic OA and the clinical and self-reported diagnoses of OA. Data were available for 199 men and 196 women in the Hertfordshire Cohort Study (HCS), UK. Participants completed a questionnaire detailing self-reported OA. Clinical OA was defined based on American College of Rheumatology (ACR) criteria. Knee radiographs were taken and graded for overall Kellgren and Lawrence (K&L) score. The mean (standard deviation (SD)) age of study participants was 75.2 (2.6) years and almost identical proportions of men and women. The prevalence of knee OA differed depending on the method employed for diagnosis; 21% of the study participants self-reported knee OA, 18% of the participants had clinical knee OA and 42% of the participants had radiographic OA. Of those 72 study participants with a self-reported diagnosis of knee OA 52 (72%) had a radiographic diagnosis of knee OA, while 66% (39 out of 59) of study participants with clinical knee OA had a diagnosis of radiographic knee OA. However 58% of those participants diagnosed with radiographic OA did not have either self-reported knee OA or a diagnosis of clinical OA. Therefore in comparison with the radiographic definition of OA, both the clinical and self-report definitions had high specificity (91.5% & 91.5% respectively) and low sensitivity (24.5% and 32.7% respectively). There is modest agreement between the radiographic, clinical and self-report methods of diagnosis of knee OA.

Measuring children's self-reported sport participation, risk perception and injury history: development and validation of a survey instrument.

Science.gov (United States)

Siesmaa, Emma J; Blitvich, Jennifer D; White, Peta E; Finch, Caroline F

2011-01-01

Despite the health benefits associated with children's sport participation, the occurrence of injury in this context is common. The extent to which sport injuries impact children's ongoing involvement in sport is largely unknown. Surveys have been shown to be useful for collecting children's injury and sport participation data; however, there are currently no published instruments which investigate the impact of injury on children's sport participation. This study describes the processes undertaken to assess the validity of two survey instruments for collecting self-reported information about child cricket and netball related participation, injury history and injury risk perceptions, as well as the reliability of the cricket-specific version. Face and content validity were assessed through expert feedback from primary and secondary level teachers and from representatives of peak sporting bodies for cricket and netball. Test-retest reliability was measured using a sample of 59 child cricketers who completed the survey on two occasions, 3-4 weeks apart. Based on expert feedback relating to face and content validity, modification and/or deletion of some survey items was undertaken. Survey items with low test-retest reliability (κ≤0.40) were modified or deleted, items with moderate reliability (κ=0.41-0.60) were modified slightly and items with higher reliability (κ≥0.61) were retained, with some undergoing minor modifications. This is the first survey of its kind which has been successfully administered to cricketers aged 10-16 years to collect information about injury risk perceptions and intentions for continued sport participation. Implications for its generalisation to other child sport participants are discussed. Copyright © 2010 Sports Medicine Australia. Published by Elsevier Ltd. All rights reserved.

Accuracy of self-reported drinking: observational verification of 'last occasion' drink estimates of young adults.

Science.gov (United States)

Northcote, Jeremy; Livingston, Michael

2011-01-01

As a formative step towards determining the accuracy of self-reported drinking levels commonly used for estimating population alcohol use, the validity of a 'last occasion' self-reporting approach is tested with corresponding field observations of participants' drinking quantity. This study is the first known attempt to validate the accuracy of self-reported alcohol consumption using data from a natural setting. A total of 81 young adults (aged 18-25 years) were purposively selected in Perth, Western Australia. Participants were asked to report the number of alcoholic drinks consumed at nightlife venues 1-2 days after being observed by peer-based researchers on 239 occasions. Complete observation data and self-report estimates were available for 129 sessions, which were fitted with multi-level models assessing the relationship between observed and reported consumption. Participants accurately estimated their consumption when engaging in light to moderate drinking (eight or fewer drinks in a single session), with no significant difference between the mean reported consumption and the mean observed consumption. In contrast, participants underestimated their own consumption by increasing amounts when engaging in heavy drinking of more than eight drinks. It is suggested that recent recall methods in self-report surveys are potentially reasonably accurate measures of actual drinking levels for light to moderate drinkers, but that underestimating of alcohol consumption increases with heavy consumption. Some of the possible reasons for underestimation of heavy drinking are discussed, with both cognitive and socio-cultural factors considered.

Information on new drugs at market entry: retrospective analysis of health technology assessment reports versus regulatory reports, journal publications, and registry reports.

Science.gov (United States)

Köhler, Michael; Haag, Susanne; Biester, Katharina; Brockhaus, Anne Catharina; McGauran, Natalie; Grouven, Ulrich; Kölsch, Heike; Seay, Ulrike; Hörn, Helmut; Moritz, Gregor; Staeck, Kerstin; Wieseler, Beate

2015-02-26

When a new drug becomes available, patients and doctors require information on its benefits and harms. In 2011, Germany introduced the early benefit assessment of new drugs through the act on the reform of the market for medicinal products (AMNOG). At market entry, the pharmaceutical company responsible must submit a standardised dossier containing all available evidence of the drug's added benefit over an appropriate comparator treatment. The added benefit is mainly determined using patient relevant outcomes. The "dossier assessment" is generally performed by the Institute for Quality and Efficiency in Health Care (IQWiG) and then published online. It contains all relevant study information, including data from unpublished clinical study reports contained in the dossiers. The dossier assessment refers to the patient population for which the new drug is approved according to the summary of product characteristics. This patient population may comprise either the total populations investigated in the studies submitted to regulatory authorities in the drug approval process, or the specific subpopulations defined in the summary of product characteristics ("approved subpopulations"). To determine the information gain from AMNOG documents compared with non-AMNOG documents for methods and results of studies available at market entry of new drugs. AMNOG documents comprise dossier assessments done by IQWiG and publicly available modules of company dossiers; non-AMNOG documents comprise conventional, publicly available sources-that is, European public assessment reports, journal publications, and registry reports. The analysis focused on the approved patient populations. Retrospective analysis. All dossier assessments conducted by IQWiG between 1 January 2011 and 28 February 2013 in which the dossiers contained suitable studies allowing for a full early benefit assessment. We also considered all European public assessment reports, journal publications, and registry reports

Substance use in individuals with mild to borderline intellectual disability: A comparison between self-report, collateral-report and biomarker analysis.

Science.gov (United States)

VanDerNagel, Joanneke E L; Kiewik, Marion; van Dijk, Marike; Didden, Robert; Korzilius, Hubert P L M; van der Palen, Job; Buitelaar, Jan K; Uges, Donald R A; Koster, Remco A; de Jong, Cor A J

2017-04-01

Individuals with mild or borderline intellectual disability (MBID) are at risk of substance use (SU). At present, it is unclear which strategy is the best for assessing SU in individuals with MBID. This study compares three strategies, namely self-report, collateral-report, and biomarker analysis. In a sample of 112 participants with MBID from six Dutch facilities providing care to individuals with intellectual disabilities, willingness to participate, SU rates, and agreement between the three strategies were explored. The Substance use and misuse in Intellectual Disability - Questionnaire (SumID-Q; self-report) assesses lifetime use, use in the previous month, and recent use of tobacco, alcohol, cannabis, and stimulants. The Substance use and misuse in Intellectual Disability - Collateral-report questionnaire (SumID-CR; collateral-report) assesses staff members' report of participants' SU over the same reference periods as the SumID-Q. Biomarkers for SU, such as cotinine (metabolite of nicotine), ethanol, tetrahydrocannabinol (THC), and its metabolite THCCOOH, benzoylecgonine (metabolite of cocaine), and amphetamines were assessed in urine, hair, and sweat patches. Willingness to provide biomarker samples was significantly lower compared to willingness to complete the SumID-Q (p<0.001). Most participants reported smoking, drinking alcohol, and using cannabis at least once in their lives, and about a fifth had ever used stimulants. Collateralreported lifetime use was significantly lower. However, self-reported past month and recent SU rates did not differ significantly from the rates from collateral-reports or biomarkers, with the exception of lower alcohol use rates found in biomarker analysis. The agreement between self-report and biomarker analysis was substantial (kappas 0.60-0.89), except for alcohol use (kappa 0.06). Disagreement between SumID-Q and biomarkers concerned mainly over-reporting of the SumID-Q. The agreement between SumID-CR and biomarker

Self-reported mental health and its gender differences as a predictor of suicide in the middle-aged.

Science.gov (United States)

Bramness, Jørgen G; Walby, Fredrik A; Hjellvik, Vidar; Selmer, Randi; Tverdal, Aage

2010-07-15

Studies of clinical cohorts and retrospective reports have identified psychiatric disorders as paramount risk factors for suicide. Much less is known about how self-reported mental health is related to completed suicide. To study the relation between self-reported mental health and risk of completed suicide, the authors prospectively followed a population-based Norwegian cohort of 61,588 men and 69,774 women aged 39-44 years for an average of 10.4 years between 1994 and 2007. Self-reported mental health was measured using an instrument based on the Hopkins Symptom Checklist and the General Health Questionnaire. Completed suicides were registered in the official Norwegian Cause of Death Registry. Females reported higher levels of mental distress than males. In comparison with persons reporting the fewest mental health symptoms, the adjusted hazard ratio for suicide increased from 1.8 (95% confidence interval (CI): 1.1, 2.9) in the moderately depressed group to 8.9 (95% CI: 4.4, 18.2) in the most depressed group. The risk difference was greatest in males. At each level of the mental health index, males had double the risk of suicide of females (hazard ratio = 2.3, 95% CI: 1.5, 3.3). This study shows a dose-response effect of self-reported mental health problems on completed suicide and replicates the gender paradox observed in the general population with prospective data.

New Possibilities in Life with Type 2 Diabetes: Experiences from Participating in a Guided Self-Determination Programme in General Practice

Directory of Open Access Journals (Sweden)

Bjørg Karlsen

2018-01-01

Full Text Available Research suggests that guided self-determination programmes can support self-management of diabetes by empowering self-determined goal setting and competence building. As most research in this area has focused on people with type 1 diabetes, knowledge is lacking on how adults with type 2 diabetes mellitus experience participation in such programmes. This study reports the modelling phase of a complex intervention design that explored the experiences of adults with type 2 diabetes who participated in a nurse-led guided self-determination programme in general practice and examines how the programme affected patients’ motivation to self-manage diabetes. The qualitative design with semistructured interviews included 9 adults with type 2 diabetes who participated in the programme. Qualitative content analysis was used to analyse the data. The findings indicate that the participants experienced new life possibilities after participating in the programme, which seemed to have a positive influence on their motivation for self-management. Through reflections about how to live with diabetes, the participants reinterpreted their life with diabetes by gradually developing a closer relationship with the disease, moving towards acceptance. The fact that dialogue with the nurses was seen to be on an equal footing helped support the participants to become more self-determined.

Self-efficacy, physical competence and self-esteem in basketball participants with and without physical disability

Directory of Open Access Journals (Sweden)

J.P. Ferreira

2011-01-01

Full Text Available The purpose of this study was to assess the hypothetical hierarchical relationship between self-efficacy, physical self and global self-esteem, in groups with and without physical disability as well as gender and condition between groups. A second purpose was to assess the influence of independent variables, such as time and frequency of sport involvement, on self-efficacy, physical competence and global self-esteem for each of the groups studied. Participants were 193 basketball players, 59 male athletes with disability (mean age 32.80 ± 11.64, 80 male athletes without disability (mean age 21.48 ± 4.69, and 54 female athletes without disability (mean age 22.91 ± 3.11, all participating in Portuguese national competitions. Results showed evidence of a hierarchical organization among self-efficacy, physical self-perceptions and global self-esteem. Physical self-worth was also confirmed as a mediator between self-perceptions at the base of the model and feelings in the apex, i.e., between physical self-perceptions and global self-esteem. However, this relationship was found to be a negative one. Strong perceptions of self-efficacy and physical competence seem to generate weaker global feelings of self-confidence and personal satisfaction in everyday life contexts.

Variation in performance measure criteria significantly affects cardiology practice rankings: Insights from the National Cardiovascular Data Registry's Practice Innovation and Clinical Excellence Registry.

Science.gov (United States)

Eapen, Zubin J; Tang, Fengming; Jones, Phil G; Maddox, Thomas M; Oetgen, William J; Spertus, John A; Rumsfeld, John S; Heidenreich, Paul A; Peterson, Eric D; Drozda, Joseph P

2015-06-01

Million Hearts is a national initiative to prevent 1 million heart attacks and strokes over 5 years by improving cardiovascular prevention. An important tool in the success of programs like Million Hearts is public ranking on the quality of practices, yet different measures may provide different rankings, so the true quality of practices is difficult to discern. We evaluated the quality of ambulatory cardiology care using performance measure metrics. We compared rankings of practices participating in the National Cardiovascular Data Registry's Practice Innovation and Clinical Excellence Registry using measures from (1) the physician quality reporting system and (2) the American College of Cardiology/American Heart Association/Physician Consortium for Performance Improvement. We compared achievement rates for measures between the 2 frameworks and determined correlations in rankings using Spearman correlation coefficients. From January 1, 2008 to December 31, 2012, there were 1,711,326 patients enrolled from 111 US practices. Among eligible patients, the physician quality reporting system and American College of Cardiology/American Heart Association/Physician Consortium for Performance Improvement measures were achieved in 76.1% versus 77.4% for antiplatelet prescription (P performance and failing to achieve public health goals. Copyright © 2015 Elsevier Inc. All rights reserved.

pedometer-measured physical activity, self-reported physical activity

African Journals Online (AJOL)

between self-reported and pedometer-measured physical activity was also determined. Results. Average ... Methods. This was a cross-sectional study among employed South African adults. Participant ... acquired information on physical activity habits. Questions ..... How many days of monitoring predict physical activity and ...

United States Transuranium Registry annual report October 1, 1975-October 1, 1976 to ERDA Division of Biomedical and Environmental Research

International Nuclear Information System (INIS)

Breitenstein, B.D. Jr.; Norwood, W.D.; Newton, C.E. Jr.

1976-12-01

The US Transuranium Registry is a center for collecting precise information about the occupational effects of transuranic elements on man. To date 13,943 past and present transuranium workers have been tabulated. Health, mortality, causes of death and transuranic organ depositions are being studied. Bryce D. Breitenstein, Jr., M.D. was named Director of the Registry in July 1976. The Los Alamos Scientific Laboratory is directing the epidemiological portion of a plutonium worker health study with George Voelz, M.D. and Louis Hempelmann, M.D. serving as principal investigators. The USTR is affiliated with this study. USTR statistical data shows progressive acquisition of information for 1975 and 1976. ERDA contractor and NRC licensee activities at participating sited are discussed. Preparation of the input format to record and store USTR data has been completed and is ready for trial operation. USTR educational and informational activities were extensive and varied. Many queries arose from the use of published Registry autopsy data by Ralph Nader's associate Dr. S. Wolfe. There was continued cooperation with representatives of the British Atomic Energy Authority in their efforts to develop a plutonium registry

Self-esteem across the second half of life: The role of socioeconomic status, physical health, social relationships, and personality factors.

Science.gov (United States)

von Soest, Tilmann; Wagner, Jenny; Hansen, Thomas; Gerstorf, Denis

2018-06-01

Self-esteem development across adulthood has been in the center of interest for some time now. However, not much is known about factors that shape self-esteem and its development in the second half of life and whether the factors differ with age and gender. To examine these questions, this study uses 2-wave data from the population-based NorLAG study in Norway (N = 5,555; M age = 58 years; 51% women) and combines self-report data on self-esteem and personality with registry-based information on socioeconomic status (education, income, unemployment), health problems (sick leave, lifetime history of disability), and social relationships (cohabiting partner, lifetime history of divorce and widowhood). Results from latent change score models revealed that self-esteem peaked at around age 50 and declined thereafter. More importantly, lower socioeconomic status, not having a cohabiting partner, unemployment, and disability were each uniquely associated with lower levels of self-esteem and/or steeper declines in self-esteem over the 5-year study period. Over and above registry-based information, personality characteristics were relevant, with a more mature personality being associated with higher self-esteem level. Emotionally stable participants also showed less pronounced declines in self-esteem. Moreover, associations of disability and of emotional stability with self-esteem level were weaker with advancing age. Among women, self-esteem level was more strongly associated with emotional stability and less strongly with openness, compared to men. Our findings demonstrate the utility of registry-based information and suggest that physical health, social relationships, and personality factors are in manifold ways uniquely associated with self-esteem and its development later in life. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

Linking Concurrent Self-Reports and Retrospective Proxy Reports About the Last Year of Life: A Prevailing Picture of Life Satisfaction Decline

Science.gov (United States)

Gerstorf, Denis; Ram, Nilam; Schupp, Jürgen; Sprangers, Mirjam A. G.; Wagner, Gert G.

2014-01-01

Objective. We examined the extent to which retrospective proxy reports of well-being mirror participant self-reports at 12–24 months before death and how proxy reports of well-being change over the last year of life. We also explored the role of sociodemographic, cognitive, and health factors of both participants and proxies in moderating such associations. Method. We used retrospective proxy ratings obtained in the German Socio-Economic Panel Study (N = 164; age at death = 19–99 years). Results. Results revealed moderate agreement between self- and proxy reports (r = .42), but proxies, on average, overestimated participants’ life satisfaction by two thirds of a scale point on a 0–10 scale (or 0.4 SD). Discrepancies were particularly pronounced when proxies themselves reported low life satisfaction. Over the last year of life, participants were viewed to have experienced declines in life satisfaction (−0.54 SD). Declines were stronger for ill participants and proxies who reported low life satisfaction. Discussion. Results qualify theoretical expectations and empirical results based on self-report data that are typically available 1 or 2 years before death. We discuss that retrospective proxy reports in panel surveys can be used as a hypothesis-generating tool to gather insights into late life. PMID:23766436

Glocal clinical registries: pacemaker registry design and implementation for global and local integration--methodology and case study.

Directory of Open Access Journals (Sweden)

Kátia Regina da Silva

Full Text Available The ability to apply standard and interoperable solutions for implementing and managing medical registries as well as aggregate, reproduce, and access data sets from legacy formats and platforms to advanced standard formats and operating systems are crucial for both clinical healthcare and biomedical research settings.Our study describes a reproducible, highly scalable, standard framework for a device registry implementation addressing both local data quality components and global linking problems.We developed a device registry framework involving the following steps: (1 Data standards definition and representation of the research workflow, (2 Development of electronic case report forms using REDCap (Research Electronic Data Capture, (3 Data collection according to the clinical research workflow and, (4 Data augmentation by enriching the registry database with local electronic health records, governmental database and linked open data collections, (5 Data quality control and (6 Data dissemination through the registry Web site. Our registry adopted all applicable standardized data elements proposed by American College Cardiology / American Heart Association Clinical Data Standards, as well as variables derived from cardiac devices randomized trials and Clinical Data Interchange Standards Consortium. Local interoperability was performed between REDCap and data derived from Electronic Health Record system. The original data set was also augmented by incorporating the reimbursed values paid by the Brazilian government during a hospitalization for pacemaker implantation. By linking our registry to the open data collection repository Linked Clinical Trials (LinkedCT we found 130 clinical trials which are potentially correlated with our pacemaker registry.This study demonstrates how standard and reproducible solutions can be applied in the implementation of medical registries to constitute a re-usable framework. Such approach has the potential to

EMI Registry Design

CERN Document Server

Memon, S

2011-01-01

Grid services are the fundamental building blocks of today's Distributed Computing Infrastructures (DCI). The discovery of services in the DCI is a primary function that is a precursor to other tasks such as workload and data management. In this context, a service registry can be used to fulfil such a requirement. Existing service registries, such as the ARC Information Index or UNICORE Registry, are examples that have proven themselves in production environments. Such implementations provide a centralized service registry, however, todays DCIs, such as EGI, are based on a federation model. It is therefore necessary for the service registry to mirror such a model in order for it to seamlessly fit into the operational and management requirements - a DCI built using federated approach. This document presents an architecture for a federated service registry and a prototype based on this architecture, the EMI Registry. Special attention is given to how the federated service registry is robust to environment failu...

The association between recent abuse and menopausal symptom bother: results from the Data Registry on Experiences of Aging, Menopause, and Sexuality (DREAMS).

Science.gov (United States)

Vegunta, Suneela; Kuhle, Carol; Kling, Juliana M; Files, Julia A; Kapoor, Ekta; David, Paru S; Rullo, Jordan; Sood, Richa; Thielen, Jacqueline M; Jatoi, Aminah; Schroeder, Darrell R; Faubion, Stephanie S

2016-05-01

The aim of the study was to determine whether there is an association between current menopausal symptom bother and a history of abuse (physical, sexual, or emotional/verbal) in the last year. A cross-sectional survey was completed using the Data Registry on Experiences of Aging, Menopause, and Sexuality and the Menopause Health Questionnaire. Data from the Menopause Health Questionnaire were collected from 4,956 women seen consecutively for menopause consultation in the Women's Health Clinic at Mayo Clinic (Rochester, MN) from January 1, 2006 through October 7, 2014. Data from 3,740 women were included in the analysis. Menopausal symptom ratings were compared between women reporting a history of abuse (physical, sexual, or emotional/verbal) in the last year and those not using a two-sample t test. Analysis of covariance was used to assess whether abuse was associated with menopausal symptom bother after adjusting for baseline participant characteristics. Of the 3,740 women, 253 (6.8%) reported experiencing one or more forms of abuse in the last year, the majority (96%) of which was verbal/emotional abuse. Those reporting abuse in the last year had higher (P menopausal symptom bother scores. Consistent findings were obtained from multivariable analyses adjusting for all demographic and substance use characteristics. In the present study from the Data Registry on Experiences of Aging, Menopause, and Sexuality, menopausal symptom bother scores were directly associated with recent self-reported abuse.

Accurate assessment of adherence: self-report and clinician report vs electronic monitoring of nebulizers.

Science.gov (United States)

Daniels, Tracey; Goodacre, Lynne; Sutton, Chris; Pollard, Kim; Conway, Steven; Peckham, Daniel

2011-08-01

People with cystic fibrosis have a high treatment burden. While uncertainty remains about individual patient level of adherence to medication, treatment regimens are difficult to tailor, and interventions are difficult to evaluate. Self- and clinician-reported measures are routinely used despite criticism that they overestimate adherence. This study assessed agreement between rates of adherence to prescribed nebulizer treatments when measured by self-report, clinician report, and electronic monitoring suitable for long-term use. Seventy-eight adults with cystic fibrosis were questioned about their adherence to prescribed nebulizer treatments over the previous 3 months. Self-report was compared with clinician report and stored adherence data downloaded from the I-Neb nebulizer system. Adherence measures were expressed as a percentage of the prescribed regimen, bias was estimated by the paired difference in mean (95% CI) patient and clinician reported and actual adherence. Agreement between adherence measures was calculated using intraclass correlation coefficients (95% CI), and disagreements for individuals were displayed using Bland-Altman plots. Patient-identified prescriptions matched the medical record prescription. Median self-reported adherence was 80% (interquartile range, 60%-95%), whereas median adherence measured by nebulizer download was 36% (interquartile range, 5%-84.5%). Nine participants overmedicated and underreported adherence. Median clinician report ranged from 50% to 60%, depending on profession. Extensive discrepancies between self-report and clinician report compared with nebulizer download were identified for individuals. Self- and clinician-reporting of adherence does not provide accurate measurement of adherence when compared with electronic monitoring. Using inaccurate measures has implications for treatment burden, clinician prescribing practices, cost, and accuracy of trial data.

25 CFR 1000.14 - Who is eligible to participate in Tribal self-governance?

Science.gov (United States)

2010-04-01

... 25 Indians 2 2010-04-01 2010-04-01 false Who is eligible to participate in Tribal self-governance...-DETERMINATION AND EDUCATION ACT Selection of Additional Tribes for Participation in Tribal Self-Governance Eligibility § 1000.14 Who is eligible to participate in Tribal self-governance? Two types of entities are...

Associations between teaching effectiveness and participant self-reflection in continuing medical education.

Science.gov (United States)

Ratelle, John T; Bonnes, Sara L; Wang, Amy T; Mahapatra, Saswati; Schleck, Cathy D; Mandrekar, Jayawant N; Mauck, Karen F; Beckman, Thomas J; Wittich, Christopher M

2017-07-01

Effective medical educators can engage learners through self-reflection. However, little is known about the relationships between teaching effectiveness and self-reflection in continuing medical education (CME). We aimed to determine associations between presenter teaching effectiveness and participant self-reflection in conference-based CME. This cross-sectional study evaluated presenters and participants at a national CME course. Participants provided CME teaching effectiveness (CMETE) ratings and self-reflection scores for each presentation. Overall CMETE and CME self-reflection scores (five-point Likert scale with one as strongly disagree and five as strongly agree) were averaged for each presentation. Correlations were measured among self-reflection, CMETE, and presentation characteristics. In total, 624 participants returned 430 evaluations (response, 68.9%) for the 38 presentations. Correlation between CMETE and self-reflection was medium (Pearson correlation, 0.3-0.5) or large (0.5-1.0) for most presentations (n = 33, 86.9%). Higher mean (SD) CME reflection scores were associated with clinical cases (3.66 [0.12] vs. 3.48 [0.14]; p = 0.003) and audience response (3.66 [0.12] vs. 3.51 [0.14]; p = 0.005). To our knowledge, this is the first study to show a relationship between teaching effectiveness and participant self-reflection in conference-based CME. Presenters should consider using clinical cases and audience response systems to increase teaching effectiveness and promote self-reflection among CME learners.

Attitude and Empowerment as Predictors Of Self-Reported Self-Care and A1C Values among African Americans With Diabetes Mellitus.

Science.gov (United States)

Kleier, Jo Ann; Dittman, Patricia Welch

2014-01-01

Diabetes mellitus is a leading cause of end stage renal disease among African Americans. The complications associated with diabetes can largely be reduced with effective diabetes self-management. Selected variables were tested as predictors of self-reported self-care, and self-reported self-care was tested as a predictor of A1C among 100 African-American individuals with diabetes. Participants scored high on their understanding of diabetes, its treatment, and engagement in self-care activities, but this was not reflected in their body mass index levels or A IC values.

The First 500 Registrations to the Research Registry®: Advancing Registration of Under-registered Study Types

Directory of Open Access Journals (Sweden)

Riaz Agha

2016-09-01

Full Text Available The Declaration of Helsinki 2013 encourages the registration of all research studies involving human participants. However, emphasis has been placed on prospective clinical trials, and it is estimated that only 10% of observational studies are registered. In response, Research Registry® was launched in February 2015; a retrospectively curated registry that is free and easy to use. Research Registry® enables prospective or retrospective registration of studies, including those study types that cannot be registered on existing registries. In this study, we describe the first 500 registrations on Research Registry®.Since the launch of Research Registry® in February 2015, data of registrations have been collected, including type of studies registered, country of origin and data curation activity. Inappropriate registrations, such as duplicates, were identified by the data curation process. These were removed from the database or modified as required. A quality score was assigned for each registration, based on Bradford-Hill’s criteria on what research studies should convey. Changes in quality scores over time were assessed. 500 studies were registered on Research Registry® from February 2015 to October 2015, with a total of 1.7 million patients enrolled. The most common study types were retrospective cohort studies (37.2%, case series (14.8% and first-in-man case reports (10.4%. Registrations were received from 57 different countries; the most submissions were received from Turkey, followed by China and the United Kingdom. Retrospective data curation identified 80 studies that were initially registered as the incorrect study type, and were subsequently correct. The Kruskal-Wallis test identified a significant improvement in quality scores for registrations from February 2015 to October 2015 (p < 0.0001.Since its conception in February 2015, Research Registry® has established itself as a new registry that is free, easy to use and enables the

The First 500 Registrations to the Research Registry®: Advancing Registration of Under-Registered Study Types.

Science.gov (United States)

Agha, Riaz; Fowler, Alexander J; Limb, Christopher; Al Omran, Yasser; Sagoo, Harkiran; Koshy, Kiron; Jafree, Daniyal J; Anwar, Mohammed Omer; McCullogh, Peter; Orgill, Dennis Paul

2016-01-01

The Declaration of Helsinki 2013 encourages the registration of all research studies involving human participants. However, emphasis has been placed on prospective clinical trials, and it is estimated that only 10% of observational studies are registered. In response, Research Registry ® was launched in February 2015; a retrospectively curated registry that is free and easy to use. Research Registry ® enables prospective or retrospective registration of studies, including those study types that cannot be registered on existing registries. In this study, we describe the first 500 registrations on Research Registry ® . Since the launch of Research Registry ® in February 2015, data of registrations have been collected, including type of studies registered, country of origin, and data curation activity. Inappropriate registrations, such as duplicates, were identified by the data curation process. These were removed from the database or modified as required. A quality score was assigned for each registration, based on Sir Austin Bradford Hill's criteria on what research studies should convey. Changes in quality scores over time were assessed. A total of 500 studies were registered on Research Registry ® from February 2015 to October 2015, with a total of 1.7 million patients enrolled. The most common study types were retrospective cohort studies (37.2%), case series (14.8%), and first-in-man case reports (10.4%). Registrations were received from 57 different countries; the most submissions were received from Turkey, followed by China and the United Kingdom. Retrospective data curation identified 80 studies that were initially registered as the incorrect study type, and were subsequently correct. The Kruskal-Wallis test identified a significant improvement in quality scores for registrations from February 2015 to October 2015 ( p  < 0.0001). Since its conception in February 2015, Research Registry ® has established itself as a new registry that is free, easy to

Annual report of the United States transuranium and uranium registries, October 1, 1988--September 30, 1989

International Nuclear Information System (INIS)

Kathren, R.L.; Swint, M.J.; Dietert, S.E.

1990-04-01

This report summarizes the primary scientific activities of the United States Transuranium and Uranium Registries for the period October 1, 1988 through September 30, 1989. The Registries are parallel human tissue research programs devoted to the study of the actinide elements in man. The emphasis of the Transuranium Registry was directed toward evaluation of six whole body donations. In the five cases whose exposure was through inhalation, approximately half of the total body content of Pu-239 + 240 and a third of the Am-241 was found in the respiratory tract, suggesting that these nuclides are more avidly retained than predicted by the current model of the International Commission on Radiological Protection. A significant fraction of these nuclides is found in soft tissues other than liver, and an uptake fraction of 0.2 is proposed for muscle, with a residence half-time of 10 years. Studies of these and routine autopsy cases indicate that more than 90% of the total respiratory tract plutonium or americium is in the lungs, with the remainder in the lymph nodes, and that a greater fraction is found in the lungs of smokers relative to the lymph nodes. Primary activities of the Uranium Registry centered around the acquisition of a whole body donation from a woman who had received an injection of colloidal thorium dioxide some 38 years prior to death

Down syndrome: national conference on patient registries, research databases, and biobanks.

Science.gov (United States)

Oster-Granite, Mary Lou; Parisi, Melissa A; Abbeduto, Leonard; Berlin, Dorit S; Bodine, Cathy; Bynum, Dana; Capone, George; Collier, Elaine; Hall, Dan; Kaeser, Lisa; Kaufmann, Petra; Krischer, Jeffrey; Livingston, Michelle; McCabe, Linda L; Pace, Jill; Pfenninger, Karl; Rasmussen, Sonja A; Reeves, Roger H; Rubinstein, Yaffa; Sherman, Stephanie; Terry, Sharon F; Whitten, Michelle Sie; Williams, Stephen; McCabe, Edward R B; Maddox, Yvonne T

2011-01-01

A December 2010 meeting, "Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks," was jointly sponsored by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH) in Bethesda, MD, and the Global Down Syndrome Foundation (GDSF)/Linda Crnic Institute for Down Syndrome based in Denver, CO. Approximately 70 attendees and organizers from various advocacy groups, federal agencies (Centers for Disease Control and Prevention, and various NIH Institutes, Centers, and Offices), members of industry, clinicians, and researchers from various academic institutions were greeted by Drs. Yvonne Maddox, Deputy Director of NICHD, and Edward McCabe, Executive Director of the Linda Crnic Institute for Down Syndrome. They charged the participants to focus on the separate issues of contact registries, research databases, and biobanks through both podium presentations and breakout session discussions. Among the breakout groups for each of the major sessions, participants were asked to generate responses to questions posed by the organizers concerning these three research resources as they related to Down syndrome and then to report back to the group at large with a summary of their discussions. This report represents a synthesis of the discussions and suggested approaches formulated by the group as a whole. Copyright © 2011. Published by Elsevier Inc. All rights reserved.

Is self-guided internet-based cognitive behavioural therapy (iCBT) harmful? An individual participant data meta-analysis.

Science.gov (United States)

Karyotaki, Eirini; Kemmeren, Lise; Riper, Heleen; Twisk, Jos; Hoogendoorn, Adriaan; Kleiboer, Annet; Mira, Adriana; Mackinnon, Andrew; Meyer, Björn; Botella, Cristina; Littlewood, Elizabeth; Andersson, Gerhard; Christensen, Helen; Klein, Jan P; Schröder, Johanna; Bretón-López, Juana; Scheider, Justine; Griffiths, Kathy; Farrer, Louise; Huibers, Marcus J H; Phillips, Rachel; Gilbody, Simon; Moritz, Steffen; Berger, Thomas; Pop, Victor; Spek, Viola; Cuijpers, Pim

2018-03-15

Little is known about potential harmful effects as a consequence of self-guided internet-based cognitive behaviour therapy (iCBT), such as symptom deterioration rates. Thus, safety concerns remain and hamper the implementation of self-guided iCBT into clinical practice. We aimed to conduct an individual participant data (IPD) meta-analysis to determine the prevalence of clinically significant deterioration (symptom worsening) in adults with depressive symptoms who received self-guided iCBT compared with control conditions. Several socio-demographic, clinical and study-level variables were tested as potential moderators of deterioration. Randomised controlled trials that reported results of self-guided iCBT compared with control conditions in adults with symptoms of depression were selected. Mixed effects models with participants nested within studies were used to examine possible clinically significant deterioration rates. Thirteen out of 16 eligible trials were included in the present IPD meta-analysis. Of the 3805 participants analysed, 7.2% showed clinically significant deterioration (5.8% and 9.1% of participants in the intervention and control groups, respectively). Participants in self-guided iCBT were less likely to deteriorate (OR 0.62, p guided iCBT has a lower rate of negative outcomes on symptoms than control conditions and could be a first step treatment approach for adult depression as well as an alternative to watchful waiting in general practice.

Self-reported Attention Deficit and Hyperactivity Disorder symptoms ...

African Journals Online (AJOL)

Objective: To determine the prevalence of self-reported attention deficit and hyperactivity disorder (ADHD) symptoms among university students in Eldoret, Kenya. Design: A cross-sectional descriptive study of all students who gave consent to participate in the study. Setting: Moi University's Town Campus, comprising the ...

Extremely prematurely born adolescents self-report of anxiety symptoms, and the mothers' reports on their offspring

DEFF Research Database (Denmark)

Sømhovd, M J; Esbjørn, B H; Hansen, B M

2018-01-01

AIM: To compare anxiety symptoms in adolescents born extremely prematurely to term-born controls. METHODS: We had 96 preterm-born adolescents and 40 term-born controls from Denmark, and their mothers score the adolescents on the Revised Children Anxiety and Depression scale. We analysed group...... differences, cross-informant correlations and relative risks for elevated anxiety symptoms. RESULTS: Self-reported anxiety symptoms did not significantly differ, although the upper confidence limit (95% CI: -3.3 to 5.1) supported an odds ratio of 2 for the preterm-born participants. Mothers of the preterm......-born participants reported higher social anxiety symptoms than did mothers of controls (51.7 versus 46.8, p = 0.001). The relative risk for being above a threshold indicating distressing anxiety was small from self-reports (1.39; p = 0.60). From mother-reports, the relative risk was noticeable but not significant...

Tattoos, body piercings, and self-injury: is there a connection? Investigations on a core group of participants practicing body modification.

Science.gov (United States)

Stirn, Aglaja; Hinz, Andreas

2008-05-01

Reliable psychosocial data about practitioners of body piercing and tattooing are few and controversial. The goal of this study was to reinvestigate the issue by studying a large sample of individuals with body modifications (BMs), focusing on the motives and relations to biographical events. A 55-item anonymous self-report questionnaire was distributed among volunteers of what is considered to be a core group of individuals wearing BMs (N=432). Results show that BMs changed the participants' attitude toward their body considerably, and 34% of all participants reported BM practices in conjunction with decisive biographical events. Twenty-seven percent of the participants admitted self-cutting during childhood. This group differed from the group without self-cutting with respect to several features before, during, and after BM. The rate of medical complications of BM was 16% in the total sample, with a remarkably higher rate (26%) among participants with a history of self-cutting. The data suggest that the significance of BMs ranges from simple peer group imitations to highly informative symptoms of possibly severe psychopathological conditions. In the latter case, BMs sometimes serve as therapeutic substitutes.

United States Transuranium and Uranium Registries

International Nuclear Information System (INIS)

Kathren, R.L.; Filipy, R.E.; Dietert, S.E.

1991-06-01

This report summarizes the primary scientific activities of the United States Transuranium and Uranium Registries for the period October 1, 1989 through September 30, 1990. The Registries are parallel human tissue research programs devoted to the study of the actinide elements in humans. To date there have been 261 autopsy or surgical specimen donations, which include 11 whole bodies. The emphasis of the Registry was directed towards quality improvement and the development of a fully computerized data base that would incorporate not only the results of postmortem radiochemical analysis, but also medical and monitoring information obtained during life. Human subjects reviews were also completed. A three compartment biokinetic model for plutonium distribution is proposed. 2 tabs

Glocal Clinical Registries: Pacemaker Registry Design and Implementation for Global and Local Integration – Methodology and Case Study

Science.gov (United States)

da Silva, Kátia Regina; Costa, Roberto; Crevelari, Elizabeth Sartori; Lacerda, Marianna Sobral; de Moraes Albertini, Caio Marcos; Filho, Martino Martinelli; Santana, José Eduardo; Vissoci, João Ricardo Nickenig; Pietrobon, Ricardo; Barros, Jacson V.

2013-01-01

Background The ability to apply standard and interoperable solutions for implementing and managing medical registries as well as aggregate, reproduce, and access data sets from legacy formats and platforms to advanced standard formats and operating systems are crucial for both clinical healthcare and biomedical research settings. Purpose Our study describes a reproducible, highly scalable, standard framework for a device registry implementation addressing both local data quality components and global linking problems. Methods and Results We developed a device registry framework involving the following steps: (1) Data standards definition and representation of the research workflow, (2) Development of electronic case report forms using REDCap (Research Electronic Data Capture), (3) Data collection according to the clinical research workflow and, (4) Data augmentation by enriching the registry database with local electronic health records, governmental database and linked open data collections, (5) Data quality control and (6) Data dissemination through the registry Web site. Our registry adopted all applicable standardized data elements proposed by American College Cardiology / American Heart Association Clinical Data Standards, as well as variables derived from cardiac devices randomized trials and Clinical Data Interchange Standards Consortium. Local interoperability was performed between REDCap and data derived from Electronic Health Record system. The original data set was also augmented by incorporating the reimbursed values paid by the Brazilian government during a hospitalization for pacemaker implantation. By linking our registry to the open data collection repository Linked Clinical Trials (LinkedCT) we found 130 clinical trials which are potentially correlated with our pacemaker registry. Conclusion This study demonstrates how standard and reproducible solutions can be applied in the implementation of medical registries to constitute a re-usable framework

United States Transuranium Registry annual report, October 1, 1980-October 1, 1981 to Human Health and Assessments Division, US Department of Energy

International Nuclear Information System (INIS)

Breitenstein, B.D. Jr.; Heid, K.R.; Swint, M.J.

1982-01-01

The Registry initiates and supports programs at the various sites, where significant numbers of transuranic workers are employed, to conduct interviews and secure medical, health physics and autopsy releases. Terminated employees, not previously contacted, are encouraged to participate in the Registry program. This effort requires cooperation from the company administration as well as the medical and health physics staff. For those persons who are not reached through this network, we attempt to reach them through information about the Registry in professional newsletters and publications. Table 1 is a summary of the status of the US Transuranium Registry autopsy program as of September 1981. The need to prove or improve the accuracy of the present in vivo models is of paramount interest to health physicists. The correlation of in vivo measurements with the radiochemical analysis brings the possibilities of increased predictability of whole body deposition closer to reality. The correlation of in vivo with autopsy tissue will aid epidemiological studies to define those observable health effects in the exposed population that should be looked for

United States Transuranium Registry. Annual report, October 1, 1983-September 30, 1984

International Nuclear Information System (INIS)

Swint, M.J.; Kathren, R.L.

1985-04-01

This report provides an overview of the objectives, program, facilities and FY-84 accomplishments of the United States Transuranium Registry. Specific activities summarized include postmortem radiochemical analysis of two whole bodies, one with a significant deposition of 241 Am and the other with a deposition of 239 Pu. Results of a followup of early Manhattan District workers as potential registrants, a possible relationship between actinide concentration in bone and ash content, and interlaboratory cooperative activities are briefly discussed along with the initiation of studies of actinides in bone marrow and hair

Adoption and implementation of mandated diabetes registries by community health centers.

Science.gov (United States)

Helfrich, Christian D; Savitz, Lucy A; Swiger, Kathleen D; Weiner, Bryan J

2007-07-01

Innovations adopted by healthcare organizations are often externally mandated. However, few studies examine how mandated innovations progress from adoption to sustained effective use. This study uses Rogers's model of organizational innovation to explore community health centers' (CHCs') mandated adoption and implementation of disease registries in the federal Health Disparities Collaborative (HDC). Case studies were conducted on six CHCs in North Carolina participating in the HDC on type 2 diabetes mellitus. Data were collected from semistructured interviews with key staff, and from site-level and individual-level surveys. Although disease registry adoption and implementation were mandated, CHCs exercised prerogative in the timing of registry adoption and the functions emphasized. Executive and medical director involvement, often directly on the HDC teams, was the single most salient influence on adoption and implementation. Staff members' personal experience with diabetes also provided context and gave registries added significance. Participants lauded HDC's technique of small-scale, rapid-cycle change, but valued even more shared problem solving and peer learning among HDC teams. However, lack of cross-training, inadequate resources, and staff turnover posed serious threats to sustainability of the registries. The present study illustrates the usefulness of Rogers's model for studying mandated innovation and highlights several key factors, including direct, personal involvement of organizational leadership, and shared problem solving and peer learning facilitated by the HDC. However, these six CHCs elected to participate early in the HDC, and may not be typical of North Carolina's remaining CHCs. Furthermore, most face important long-term challenges that threaten routinization.

Australia and New Zealand Islets and Pancreas Transplant Registry Annual Report 2017—Pancreas Waiting List, Recipients, and Donors

Science.gov (United States)

Webster, Angela C; Hedley, James; Patekar, Abhijit; Robertson, Paul; Kelly, Patrick J

2017-01-01

Abstract This is a registry report from the Australia and New Zealand Islet and Pancreas Transplant Registry. We report data for all solid organ pancreas transplant activity from inception in 1984 to end of 2016. Data analysis was performed using Stata Software version 14 (StataCorp, College Station, Tex). From 1984 to 2016 a total of 756 solid organ pancreas transplants have been performed in Australia and New Zealand, in 738 individuals. In 2016, 55 people received a pancreas transplant. These transplants were performed in Auckland (4), Monash (22), and Westmead (29). In 2016, 50 transplants were simultaneous pancreas kidney, 4 were pancreas after kidney, and 1 was a pancreas transplant alone. PMID:29026874

The efficacy of antidepressants on overall well-being and self-reported depression symptom severity in youth: a meta-analysis.

Science.gov (United States)

Spielmans, Glen I; Gerwig, Katherine

2014-01-01

Recent meta-analyses of the efficacy of second-generation antidepressants for youth have concluded that such drugs possess a statistically significant advantage over placebo in terms of clinician-rated depressive symptoms. However, no meta-analysis has included measures of quality of life, global mental health, self-esteem, or autonomy. Further, prior meta-analyses have not included self-reports of depressive symptoms. Studies were selected through searching Medline, PsycINFO, and the Cochrane Central Register for Controlled Trials databases as well as GlaxoSmithKline's online trial registry. We included self-reports of depressive symptoms and pooled measures of quality of life, global mental health, self-esteem, and autonomous functioning as a proxy for overall well-being. We found a nonsignificant difference between second-generation antidepressants and placebo in terms of self-reported depressive symptoms (k = 6 trials, g = 0.06, p = 0.36). Further, pooled across measures of quality of life, global mental health, self-esteem, and autonomy, antidepressants yielded no significant advantage over placebo (k = 3 trials, g = 0.11, p = 0.13). Though limited by a small number of trials, our analyses suggest that antidepressants offer little to no benefit in improving overall well-being among depressed children and adolescents. © 2014 S. Karger AG, Basel.

Sedentary and active: self-reported sitting time among marathon and half-marathon participants.

Science.gov (United States)

Whitfield, Geoffrey; Pettee Gabriel, Kelley K; Kohl, Harold William

2014-01-01

Emerging evidence suggests that combined physical activity (PA) and inactivity may be more important for chronic disease risk than PA alone. A highly active yet highly sedentary population is needed to study this interaction. The present purpose is to describe the sitting habits of a group of recreational runners and determine if sitting varies with reported training duration or anticipated running velocity. Marathon and half-marathon participants completed the Multicontext Sitting Time Questionnaire and reported peak training duration, anticipated finishing time, and demographic information. Sitting time was described across 5 contexts for workdays and nonworkdays. Total sitting time was analyzed by tertiles of training duration and anticipated event running velocity. 218 participants took part in this study. Median reported training time was 6.5 hours per week. Median total sitting time was higher on workdays than nonworkdays (645 and 480 minutes, respectively, P training duration or anticipated event running velocity. These results suggest that recreational distance runners are simultaneously highly sedentary and highly active, supporting independence of sedentary behaviors and moderate- to vigorous-intensity PA. This population may provide the characteristics needed to study the joint effects of active and sedentary behaviors on health outcomes.

[Italian Cystic Fibrosis Registry. Report 2011-2014].

Science.gov (United States)

Giordani, Barbara; Amato, Annalisa; Majo, Fabio; Ferrari, Gianluca; Quattrucci, Serena; Minicucci, Laura; Padoan, Rita; Floridia, Giovanna; Puppo Fornaro, Gianna; Taruscio, Domenica; Salvatore, Marco

2018-01-01

The Italian Cystic Fibrosis Registry (ICFR) is based on a new agreement about the data flow towards the Registry signed on October, 4th 2016 by the Centre for Rare Diseases of the Italian National Institute of Health (NIH), the clinicians of the Italian National Referral and Support Centres for Cystic Fibrosis, the Paediatric Hospital "Bambino Gesù" (Rome), the Italian Cystic Fibrosis Society, and the Italian League for Cystic Fibrosis. The aim of the present Report is to improve the knowledge on cystic fibrosis (CF) through the epidemiological description of Italian patients. The members of the Scientific and Technical Committee have to write a report on data collected by ICFR, in order to contribute to achieve the aims of ICFR itself, i.e., to improve the care of CF patients. In particular, the Report should contribute to the following objectives: - to analyze the medium and long-term clinical and epidemiological trends of the disease; - to identify the main healthcare needs at regional and national level in order to contribute to the healthcare programmes and to the distribution of resources; - to compare Italian data with the international ones. Analyses and results described in the present Report are referred to patients in charge to the Italian National Referral and Support Centres for Cystic Fibrosis in the period 2011-2014. Data were sent by Centres by means of a specific software (Camilla, Ibis Informatica) and has undergone a double quality control (QC): the first by NIH and the second at a European level (before the inclusion of the Italian data within the European Cystic Fibrosis Registry). These QCs assure the completeness and accuracy of data as well as their consistency with European core data. A total of 29 different CF centres (referral, support, and Paediatric Hospital "Bambino Gesù") sent their data to ICFR; data referred to the period 2011-2014. Data regarding Sardinia Region (Southern Italy) are missing; data from Molise (Southern Italy) CF

Comparison of registry methodologies for reporting carbon benefits for afforestation projects in the United States

International Nuclear Information System (INIS)

Pearson, Timothy R.H.; Brown, Sandra; Andrasko, Kenneth

2008-01-01

No mandatory national program currently exists to mitigate climate change in the US Consequently, voluntary programs and mandatory state-level programs are multiplying to allow users to register emission-offset activities, creating multiple often contradictory measurement and recording standards. For the land use sector we examined a hypothetical project: tree planting on rangelands in California. We apply four sets of protocols from the following registries - the California Climate Action Registry, the Chicago Climate Exchange (CCX), the Regional Greenhouse Gas Initiative and the USDOE 1605(b) program - and compare the results to the 'actual' net sequestration and also briefly compare them to international protocols such as the relevant Clean Development Mechanism methodology. Carbon in land use can be estimated accurately, precisely and cost-effectively, but to achieve this requires good protocols. As predicted, the consequence of applying different protocols for reportable carbon was significant. The choice of measurement pools, the handling of the baseline and the issue of uncertainty led to a baseline estimate of 0-66,690 t CO 2 -e, and final sequestered carbon totals (after 60 years) that varied between 118,044 and 312,685 t CO 2 -e-a factor of 2.5 difference. The amount reported under 1605(b) is the closest to 'actual' with CCX entity reporting the most divergent

Assessing the feasibility of a web-based registry for multiple orphan lung diseases: the Australasian Registry Network for Orphan Lung Disease (ARNOLD) experience.

Science.gov (United States)

Casamento, K; Laverty, A; Wilsher, M; Twiss, J; Gabbay, E; Glaspole, I; Jaffe, A

2016-04-18

We investigated the feasibility of using an online registry to provide prevalence data for multiple orphan lung diseases in Australia and New Zealand. A web-based registry, The Australasian Registry Network of Orphan Lung Diseases (ARNOLD) was developed based on the existing British Paediatric Orphan Lung Disease Registry. All adult and paediatric respiratory physicians who were members of the Thoracic Society of Australia and New Zealand in Australia and New Zealand were sent regular emails between July 2009 and June 2014 requesting information on patients they had seen with any of 30 rare lung diseases. Prevalence rates were calculated using population statistics. Emails were sent to 649 Australian respiratory physicians and 65 in New Zealand. 231 (32.4%) physicians responded to emails a total of 1554 times (average 7.6 responses per physician). Prevalence rates of 30 rare lung diseases are reported. A multi-disease rare lung disease registry was implemented in the Australian and New Zealand health care settings that provided prevalence data on orphan lung diseases in this region but was limited by under reporting.

Personality and self-reported use of mobile phones for games.

Science.gov (United States)

Phillips, James G; Butt, Sarah; Blaszczynski, Alex

2006-12-01

Mobile phones are popular devices that may generate problems for a section of the community. A previous study using the Eysenck Personality Questionnaire found that extraverts with low self-esteem reported more problems with their mobile phone use. The present study used the NEO FI and Coopersmith Self-Esteem Inventory to predict the self reported mobile phone use of 112 participants. Multiple regression found that people low on agreeableness were more likely to use their mobile phones to play games. The findings imply an interplay between personality traits and excessive or problematic use on mobile phones that is relevant to proposed innovations such as gambling on mobile phones.

Reliability of self-reported childhood physical abuse by adults and factors predictive of inconsistent reporting.

Science.gov (United States)

McKinney, Christy M; Harris, T Robert; Caetano, Raul

2009-01-01

Little is known about the reliability of self-reported child physical abuse (CPA) or CPA reporting practices. We estimated reliability and prevalence of self-reported CPA and identified factors predictive of inconsistent CPA reporting among 2,256 participants using surveys administered in 1995 and 2000. Reliability of CPA was fair to moderate (kappa = 0.41). Using a positive report from either survey, the prevalence of moderate (61.8%) and severe (12.0%) CPA was higher than at either survey alone. Compared to consistent reporters of having experienced CPA, inconsistent reporters were less likely to be > or = 30 years old (vs. 18-29) or Black (vs. White) and more likely to have report one type (vs. > or = 2) of CPA. These findings may assist researchers conducting and interpreting studies of CPA.

Reliability of Self-Reported Mobile Phone Ownership in Rural North-Central Nigeria: Cross-Sectional Study.

Science.gov (United States)

Menson, William Nii Ayitey; Olawepo, John Olajide; Bruno, Tamara; Gbadamosi, Semiu Olatunde; Nalda, Nannim Fazing; Anyebe, Victor; Ogidi, Amaka; Onoka, Chima; Oko, John Okpanachi; Ezeanolue, Echezona Edozie

2018-03-01

mHealth practitioners seek to leverage the ubiquity of the mobile phone to increase the impact and robustness of their interventions, particularly in resource-limited settings. However, data on the reliability of self-reported mobile phone access is minimal. We sought to ascertain the reliability of self-reported ownership of and access to mobile phones among a population of rural dwellers in north-central Nigeria. We contacted participants in a community-based HIV testing program by phone to determine actual as opposed to self-reported mobile phone access. A phone script was designed to conduct these calls and descriptive analyses conducted on the findings. We dialed 349 numbers: 110 (31.5%) were answered by participants who self-reported ownership of the mobile phone; 123 (35.2%) of the phone numbers did not ring at all; 28 (8.0%) rang but were not answered; and 88 (25.2%) were answered by someone other than the participant. We reached a higher proportion of male participants (68/133, 51.1%) than female participants (42/216, 19.4%; Pphones in rural and low-income areas in north-central Nigeria is higher than actual access. This has implications for mHealth programming, particularly for women's health. mHealth program implementers and researchers need to be cognizant of the low reliability of self-reported mobile phone access. These observations should therefore affect sample-size calculations and, where possible, alternative means of reaching research participants and program beneficiaries should be established. ©William Nii Ayitey Menson, John Olajide Olawepo, Tamara Bruno, Semiu Olatunde Gbadamosi, Nannim Fazing Nalda, Victor Anyebe, Amaka Ogidi, Chima Onoka, John Okpanachi Oko, Echezona Edozie Ezeanolue. Originally published in JMIR Mhealth and Uhealth (http://mhealth.jmir.org), 01.03.2018.

Gender differences in adolescent sport participation, teasing, self-objectification and body image concerns.

Science.gov (United States)

Slater, Amy; Tiggemann, Marika

2011-06-01

This study examined gender differences in adolescent participation in sport and physical activity, in teasing experiences specific to the physical activity domain, and the relationship between adolescent physical activity and body image. A sample of 714 adolescents (332 girls, 382 boys) aged between 12 and 16 years completed measures of participation in organised sport and other physical activities, experiences of teasing specific to sport, self-objectification and body image. Adolescent girls participated in organised sport at a lower rate than boys, but experienced higher levels of teasing. Both girls and boys reported being teased by same-sex peers, but in addition, girls also reported being teased by opposite-sex peers (i.e. boys). Time spent on aesthetic physical activities was related to disordered eating symptomatology for both girls and boys. It was concluded that teasing and body image concerns may contribute to adolescent girls' reduced rates of participation in sports and other physical activities. Copyright © 2010 The Foundation for Professionals in Services for Adolescents. Published by Elsevier Ltd. All rights reserved.

Occupational therapy evaluation: use of self-report and/or observation?

DEFF Research Database (Denmark)

Nielsen, Kristina Tomra; Wæhrens, Eva Elisabet Ejlersen

2015-01-01

BACKGROUND: The Occupational Therapy Intervention Process Model (OTIPM) serves to guide occupational therapists in their professional reasoning. The OTIPM prescribes evaluation of task performance based on both self-report and observation. Although this approach seems ideal, many clinicians raise......-I) and the Assessment of Motor and Process Skills (AMPS). RESULTS AND CONCLUSIONS: Results indicated that participants both reported and demonstrated increased effort and/or fatigue, increased use of time, need for assistance, and safety problems. However, little relationship was found between measures of self...

Windows registry forensics advanced digital forensic analysis of the Windows registry

CERN Document Server

Carvey, Harlan

2011-01-01

Harlan Carvey brings readers an advanced book on Windows Registry - the most difficult part of Windows to analyze in forensics! Windows Registry Forensics provides the background of the Registry to help develop an understanding of the binary structure of Registry hive files. Approaches to live response and analysis are included, and tools and techniques for postmortem analysis are discussed at length. Tools and techniques will be presented that take the analyst beyond the current use of viewers and into real analysis of data contained in the Registry. This book also has a DVD containing tools, instructions and videos.

Self-reported quality of ADL task performance among patients with COPD exacerbations

DEFF Research Database (Denmark)

Bendixen, Hans Jørgen; Wæhrens, Eva Elisabet Ejlersen; Wilcke, Jon Torgny

2014-01-01

OBJECTIVE: Patients suffering from chronic obstructive pulmonary disease (COPD) experience problems in the performance of activities of daily living (ADL) tasks. The objective was to examine the self-reported quality of ADL task performance among COPD patients, and to investigate whether age...... concerning age, gender, and routine COPD characteristics were drawn from the patients' medical records. RESULTS: The patients reported being inefficient to markedly inefficient when performing ADL tasks within the personal hygiene, toileting, dressing, household, mobility, and transportation domains. While...... more than 90% of the participants reported increased effort and/or fatigue when performing the ADL tasks, up to 88% of the participants relied on help from others in the performance of general household chores like cooking and shopping. Self-reported ADL ability did not correlate with age, gender...

Ethical aspects of registry-based research in the Nordic countries.

Science.gov (United States)

Ludvigsson, Jonas F; Håberg, Siri E; Knudsen, Gun Peggy; Lafolie, Pierre; Zoega, Helga; Sarkkola, Catharina; von Kraemer, Stephanie; Weiderpass, Elisabete; Nørgaard, Mette

2015-01-01

National health care registries in the Nordic countries share many attributes, but different legal and ethical frameworks represent a challenge to promoting effective joint research. Internationally, there is a lack of knowledge about how ethical matters are considered in Nordic registry-based research, and a lack of knowledge about how Nordic ethics committees operate and what is needed to obtain an approval. In this paper, we review ethical aspects of registry-based research, the legal framework, the role of ethics review boards in the Nordic countries, and the structure of the ethics application. We discuss the role of informed consent in registry-based research and how to safeguard the integrity of study participants, including vulnerable subjects and children. Our review also provides information on the different government agencies that contribute registry-based data, and a list of the major health registries in Denmark, Finland, Iceland, Norway, and Sweden. Both ethical values and conditions for registry-based research are similar in the Nordic countries. While Denmark, Finland, Iceland, Norway, and Sweden have chosen different legal frameworks, these differences can be resolved through mutual recognition of ethical applications and by harmonizing the different systems, likely leading to increased collaboration and enlarged studies.

Systemizers Are Better Code-Breakers: Self-Reported Systemizing Predicts Code-Breaking Performance in Expert Hackers and Naïve Participants

Science.gov (United States)

Harvey, India; Bolgan, Samuela; Mosca, Daniel; McLean, Colin; Rusconi, Elena

2016-01-01

Studies on hacking have typically focused on motivational aspects and general personality traits of the individuals who engage in hacking; little systematic research has been conducted on predispositions that may be associated not only with the choice to pursue a hacking career but also with performance in either naïve or expert populations. Here, we test the hypotheses that two traits that are typically enhanced in autism spectrum disorders—attention to detail and systemizing—may be positively related to both the choice of pursuing a career in information security and skilled performance in a prototypical hacking task (i.e., crypto-analysis or code-breaking). A group of naïve participants and of ethical hackers completed the Autism Spectrum Quotient, including an attention to detail scale, and the Systemizing Quotient (Baron-Cohen et al., 2001, 2003). They were also tested with behavioral tasks involving code-breaking and a control task involving security X-ray image interpretation. Hackers reported significantly higher systemizing and attention to detail than non-hackers. We found a positive relation between self-reported systemizing (but not attention to detail) and code-breaking skills in both hackers and non-hackers, whereas attention to detail (but not systemizing) was related with performance in the X-ray screening task in both groups, as previously reported with naïve participants (Rusconi et al., 2015). We discuss the theoretical and translational implications of our findings. PMID:27242491

Systemizers are better code-breakers:Self-reported systemizing predicts code-breaking performance in expert hackers and naïve participants

Directory of Open Access Journals (Sweden)

India eHarvey

2016-05-01

Full Text Available Studies on hacking have typically focused on motivational aspects and general personality traits of the individuals who engage in hacking; little systematic research has been conducted on predispositions that may be associated not only with the choice to pursue a hacking career but also with performance in either naïve or expert populations. Here we test the hypotheses that two traits that are typically enhanced in autism spectrum disorders - attention to detail and systemizing - may be positively related to both the choice of pursuing a career in information security and skilled performance in a prototypical hacking task (i.e. crypto-analysis or code-breaking. A group of naïve participants and of ethical hackers completed the Autism Spectrum Quotient, including an attention to detail scale, and the Systemizing Quotient (Baron-Cohen et al., 2001; Baron-Cohen et al., 2003. They were also tested with behavioural tasks involving code-breaking and a control task involving security x-ray image interpretation. Hackers reported significantly higher systemizing and attention to detail than non-hackers. We found a positive relation between self-reported systemizing (but not attention to detail and code-breaking skills in both hackers and non-hackers, whereas attention to detail (but not systemizing was related with performance in the x-ray screening task in both groups, as previously reported with naïve participants (Rusconi et al., 2015. We discuss the theoretical and translational implications of our findings.

Systemizers Are Better Code-Breakers: Self-Reported Systemizing Predicts Code-Breaking Performance in Expert Hackers and Naïve Participants.

Science.gov (United States)

Harvey, India; Bolgan, Samuela; Mosca, Daniel; McLean, Colin; Rusconi, Elena

2016-01-01

Studies on hacking have typically focused on motivational aspects and general personality traits of the individuals who engage in hacking; little systematic research has been conducted on predispositions that may be associated not only with the choice to pursue a hacking career but also with performance in either naïve or expert populations. Here, we test the hypotheses that two traits that are typically enhanced in autism spectrum disorders-attention to detail and systemizing-may be positively related to both the choice of pursuing a career in information security and skilled performance in a prototypical hacking task (i.e., crypto-analysis or code-breaking). A group of naïve participants and of ethical hackers completed the Autism Spectrum Quotient, including an attention to detail scale, and the Systemizing Quotient (Baron-Cohen et al., 2001, 2003). They were also tested with behavioral tasks involving code-breaking and a control task involving security X-ray image interpretation. Hackers reported significantly higher systemizing and attention to detail than non-hackers. We found a positive relation between self-reported systemizing (but not attention to detail) and code-breaking skills in both hackers and non-hackers, whereas attention to detail (but not systemizing) was related with performance in the X-ray screening task in both groups, as previously reported with naïve participants (Rusconi et al., 2015). We discuss the theoretical and translational implications of our findings.

Singing Ability, Musical Self-Concept, and Future Music Participation

Science.gov (United States)

Demorest, Steven M.; Kelley, Jamey; Pfordresher, Peter Q.

2017-01-01

Research on adults who identify as "tone deaf" suggest that their poor musical self-concept is shaped by a view of themselves as nonsingers even when their perceptual skills and singing ability are not significantly worse than the general population. Many of these adults self-selected out of further participation as children but…

REAC/TS Radiation Accident Registry: An Overview

Energy Technology Data Exchange (ETDEWEB)

Doran M. Christensen, DO, REAC/TS Associate Director and Staff Physician Becky Murdock, REAC/TS Registry and Health Physics Technician

2012-12-12

Over the past four years, REAC/TS has presented a number of case reports from its Radiation Accident Registry. Victims of radiological or nuclear incidents must meet certain dose criteria for an incident to be categorized as an “accident” and be included in the registry. Although the greatest numbers of “accidents” in the United States that have been entered into the registry involve radiation devices, the greater percentage of serious accidents have involved sealed sources of one kind or another. But if one looks at the kinds of accident scenarios that have resulted in extreme consequence, i.e., death, the greater share of deaths has occurred in medical settings.

Validation of self-reported cannabis dose and potency: an ecological study.

Science.gov (United States)

van der Pol, Peggy; Liebregts, Nienke; de Graaf, Ron; Korf, Dirk J; van den Brink, Wim; van Laar, Margriet

2013-10-01

To assess the reliability and validity of self-reported cannabis dose and potency measures. Cross-sectional study comparing self-reports with objective measures of amount of cannabis and delta-9-tetrahydrocannabinol (THC) concentration. Ecological study with assessments at participants' homes or in a coffee shop. Young adult frequent cannabis users (n = 106) from the Dutch Cannabis Dependence (CanDep) study. The objectively measured amount of cannabis per joint (dose in grams) was compared with self-reported estimates using a prompt card and average number of joints made from 1 g of cannabis. In addition, objectively assessed THC concentration in the participant's cannabis was compared with self-reported level of intoxication, subjective estimate of cannabis potency and price per gram of cannabis. Objective estimates of doses per joint (0.07-0.88 g/joint) and cannabis potency (1.1-24.7%) varied widely. Self-reported measures of dose were imprecise, but at group level, average dose per joint was estimated accurately with the number of joints made from 1 g [limit of agreement (LOA) = -0.02 g, 95% confidence interval (CI) = -0.29; 0.26], whereas the prompt card resulted in serious underestimation (LOA = 0.14 g, 95% CI = -0.10; 0.37). THC concentration in cannabis was associated with subjective potency ['average' 3.77% (P = 0.002) and '(very) strong' 5.13% more THC (P cannabis] and with cannabis price (about 1% increase in THC concentration per euro spent on 1 g of cannabis, P cannabis use appear at best to be associated weakly with objective measures. Of the self-report measures, number of joints per gram, cannabis price and subjective potency have at least some validity. © 2013 Society for the Study of Addiction.

Gender Differences in Self-Reported Symptomatology and Working Memory in College Students with ADHD

Science.gov (United States)

Kercood, Suneeta; Lineweaver, Tara T.; Kugler, Jennifer

2015-01-01

The purpose of this study was to examine gender differences in self-reported symptomatology and working memory (visuospatial and auditory) in college students with Attention Deficit Hyperactivity Disorder (ADHD). Forty-seven college students with ADHD and 44 non-affected control participants completed two self-report questionnaires and six tests…

Individual differences in self-reported self-control predict successful emotion regulation.

Science.gov (United States)

Paschke, Lena M; Dörfel, Denise; Steimke, Rosa; Trempler, Ima; Magrabi, Amadeus; Ludwig, Vera U; Schubert, Torsten; Stelzel, Christine; Walter, Henrik

2016-08-01

Both self-control and emotion regulation enable individuals to adapt to external circumstances and social contexts, and both are assumed to rely on the overlapping neural resources. Here, we tested whether high self-reported self-control is related to successful emotion regulation on the behavioral and neural level. One hundred eight participants completed three self-control questionnaires and regulated their negative emotions during functional magnetic resonance imaging using reappraisal (distancing). Trait self-control correlated positively with successful emotion regulation both subjectively and neurally, as indicated by online ratings of negative emotions and functional connectivity strength between the amygdala and prefrontal areas, respectively. This stronger overall connectivity of the left amygdala was related to more successful subjective emotion regulation. Comparing amygdala activity over time showed that high self-controllers successfully maintained down-regulation of the left amygdala over time, while low self-controllers failed to down-regulate towards the end of the experiment. This indicates that high self-controllers are better at maintaining a motivated state supporting emotion regulation over time. Our results support assumptions concerning a close relation of self-control and emotion regulation as two domains of behavioral control. They further indicate that individual differences in functional connectivity between task-related brain areas directly relate to differences in trait self-control. © The Author (2016). Published by Oxford University Press. For Permissions, please email: journals.permissions@oup.com.

Fatigue in patients with Juvenile Idiopathic Arthritis: relationship to perceived health, physical health, self-efficacy, and participation.

Science.gov (United States)

Armbrust, Wineke; Lelieveld, Otto H T M; Tuinstra, Jolanda; Wulffraat, Nico M; Bos, G J F Joyce; Cappon, Jeannette; van Rossum, Marion A J; Sauer, Pieter J J; Hagedoorn, Mariët

2016-12-06

Fatigue is common in patients with JIA and affects daily life negatively. We assessed the presence and severity of fatigue in patients with JIA, including factors presumed associated with fatigue (e.g., disease activity, disability, pain, physical activity, exercise capacity, and self-efficacy), and whether fatigue is related to participation in physical education classes, school attendance, and sports frequency. The current study used baseline data of 80 patients with JIA (age 8-13) who participated in an intervention aimed at promoting physical activity. Primary outcome measurements were fatigue, assessed using the Pediatric-Quality-of-Life-Inventory (PedsQl)-Fatigue-scale and energy level assessed using a VAS scale. Other outcome measurements were disease activity (VAS Physician Global Assessment Scale), disability (Childhood Health Assessment Questionnaire), physical activity (accelerometer), exercise capacity (Bruce treadmill test), self-efficacy (Childhood Arthritis Self-Efficacy Scale), and participation (self-report). Sixty percent of patients with JIA suffered from daily low-energy levels; 27% suffered from very low-energy levels more than half the week. Low energy levels were best predicted by disability and low physical activity. Fatigue measured with the PEDsQL was higher compared to the control-population. Disability and low self-efficacy were main predictors of fatigue. Self-efficacy was a predictor of fatigue but did not act as moderator. Fatigue was a predictor for sports frequency but not for school attendance. Fatigue is a significant problem for JIA patients. Interventions aimed at reducing perceived disability, stimulating physical activity, and enhancing self-efficacy might reduce fatigue and thereby enhance participation. Trial number ISRCTN92733069.

Self-Concept Changes in Multiple Self-Concept Domains of Gifted Students Participating in a Summer Residential School

Science.gov (United States)

Preckel, Franzis; Rach, Hannah; Scherrer, Vsevolod

2016-01-01

The present study investigated changes in self-esteem, academic self-concept, intellectual self-concept, and social self-concepts of acceptance, assertion, relations with same-sex peers and relations with other-sex peers with 177 gifted students participating in a 16-day summer school in Germany. Students were assessed three times by self-report…

Balanced: a randomised trial examining the efficacy of two self-monitoring methods for an app-based multi-behaviour intervention to improve physical activity, sitting and sleep in adults

Directory of Open Access Journals (Sweden)

Mitch J. Duncan

2016-07-01

Full Text Available Abstract Background Many adults are insufficiently physically active, have prolonged sedentary behaviour and report poor sleep. These behaviours can be improved by interventions that include education, goal setting, self-monitoring, and feedback strategies. Few interventions have explicitly targeted these behaviours simultaneously or examined the relative efficacy of different self-monitoring methods. Methods/Design This study aims to compare the efficacy of two self-monitoring methods in an app-based multi-behaviour intervention to improve objectively measured physical activity, sedentary, and sleep behaviours, in a 9 week 2–arm randomised trial. Participants will be adults (n = 64 who report being physically inactive, sitting >8 h/day and frequent insufficient sleep (≥14 days out of last 30. The “Balanced” intervention is delivered via a smartphone ‘app’, and includes education materials (guidelines, strategies to promote change in behaviour, goal setting, self-monitoring and feedback support. Participants will be randomly allocated to either a device-entered or user-entered self-monitoring method. The device-entered group will be provided with a activity tracker to self-monitor behaviours. The user-entered group will recall and manually record behaviours. Assessments will be conducted at 0, 3, 6, and 9 weeks. Physical activity, sedentary behaviour and sleep-wake behaviours will be measured using the wrist worn Geneactiv accelerometer. Linear mixed models will be used to examine differences between groups and over time using an alpha of 0.01. Discussion This study will evaluate an app-based multi-behavioural intervention to improve physical activity, sedentary behaviour and sleep; and the relative efficacy of two different approaches to self-monitoring these behaviours. Outcomes will provide information to inform future interventions and self-monitoring targeting these behaviours. Trial registration ACTRN12615000182594

Balanced: a randomised trial examining the efficacy of two self-monitoring methods for an app-based multi-behaviour intervention to improve physical activity, sitting and sleep in adults.

Science.gov (United States)

Duncan, Mitch J; Vandelanotte, Corneel; Trost, Stewart G; Rebar, Amanda L; Rogers, Naomi; Burton, Nicola W; Murawski, Beatrice; Rayward, Anna; Fenton, Sasha; Brown, Wendy J

2016-07-30

Many adults are insufficiently physically active, have prolonged sedentary behaviour and report poor sleep. These behaviours can be improved by interventions that include education, goal setting, self-monitoring, and feedback strategies. Few interventions have explicitly targeted these behaviours simultaneously or examined the relative efficacy of different self-monitoring methods. This study aims to compare the efficacy of two self-monitoring methods in an app-based multi-behaviour intervention to improve objectively measured physical activity, sedentary, and sleep behaviours, in a 9 week 2-arm randomised trial. Participants will be adults (n = 64) who report being physically inactive, sitting >8 h/day and frequent insufficient sleep (≥14 days out of last 30). The "Balanced" intervention is delivered via a smartphone 'app', and includes education materials (guidelines, strategies to promote change in behaviour), goal setting, self-monitoring and feedback support. Participants will be randomly allocated to either a device-entered or user-entered self-monitoring method. The device-entered group will be provided with a activity tracker to self-monitor behaviours. The user-entered group will recall and manually record behaviours. Assessments will be conducted at 0, 3, 6, and 9 weeks. Physical activity, sedentary behaviour and sleep-wake behaviours will be measured using the wrist worn Geneactiv accelerometer. Linear mixed models will be used to examine differences between groups and over time using an alpha of 0.01. This study will evaluate an app-based multi-behavioural intervention to improve physical activity, sedentary behaviour and sleep; and the relative efficacy of two different approaches to self-monitoring these behaviours. Outcomes will provide information to inform future interventions and self-monitoring targeting these behaviours. ACTRN12615000182594 (Australian New Zealand Clinical Trials Registry. Registry URL: www.anzctr.org.au ; registered

Can registry data be used as a proxy for perceived stress? A cross-sectional study.

Science.gov (United States)

Jensen, Laura Schärfe; Overgaard, Charlotte; Garne, Jens Peter; Carlsen, Kathrine; Bøggild, Henrik; Fonager, Kirsten

2016-07-01

This study explores the applicability of registry data as a proxy for perceived stress by examining the association between perceived stress measured in health surveys and registry data. Of 35,700 randomly invited participants from the 2010 Health Survey in the North Denmark Region (age 16-99 years), 21,842 answered 10 items from Cohen's Perceived Stress Scale. Respondents were divided into quartiles based on their stress score. Survey information was individually linked to national registries containing information on prescribed psychiatric medication and consultations with psychologists or psychiatrists from 2009 to 2011. The percentage of persons with prescriptions or consultations was higher (37.6%) in the highest stress score group, compared with the lowest stress score group (7.7%). Odds ratio (95% confidence interval) for the highest score compared with the lowest score was 7.3 (6.5-8.1). Different combinations of treatment showed low sensitivity (8.7%-37.6%), positive predictive value (49.4%-56.8%), and positive agreement (16.2%-42.7%) were found, whereas specificity (88.5%-98.0%) and negative agreement (85.5%-87.2%) were higher. Kappa measure showed slight to fair agreement (0.104-0.285). Participants reporting high perceived stress were more often prescribed medications and referred for consultations with psychologists or psychiatrists. However, due to low predictive values, registry data may not be suitable as a proxy for perceived stress. Copyright © 2016 Elsevier Inc. All rights reserved.

Second generation registry framework.

Science.gov (United States)

Bellgard, Matthew I; Render, Lee; Radochonski, Maciej; Hunter, Adam

2014-01-01

Information management systems are essential to capture data be it for public health and human disease, sustainable agriculture, or plant and animal biosecurity. In public health, the term patient registry is often used to describe information management systems that are used to record and track phenotypic data of patients. Appropriate design, implementation and deployment of patient registries enables rapid decision making and ongoing data mining ultimately leading to improved patient outcomes. A major bottleneck encountered is the static nature of these registries. That is, software developers are required to work with stakeholders to determine requirements, design the system, implement the required data fields and functionality for each patient registry. Additionally, software developer time is required for ongoing maintenance and customisation. It is desirable to deploy a sophisticated registry framework that can allow scientists and registry curators possessing standard computing skills to dynamically construct a complete patient registry from scratch and customise it for their specific needs with little or no need to engage a software developer at any stage. This paper introduces our second generation open source registry framework which builds on our previous rare disease registry framework (RDRF). This second generation RDRF is a new approach as it empowers registry administrators to construct one or more patient registries without software developer effort. New data elements for a diverse range of phenotypic and genotypic measurements can be defined at any time. Defined data elements can then be utilised in any of the created registries. Fine grained, multi-level user and workgroup access can be applied to each data element to ensure appropriate access and data privacy. We introduce the concept of derived data elements to assist the data element standards communities on how they might be best categorised. We introduce the second generation RDRF that

Reliability of self-reported eating disorders : Optimizing population screening

NARCIS (Netherlands)

Keski-Rahkonen, Anna; Sihvola, Elina; Raevuori, Anu; Kaukoranta, Jutta; Bulik, Cynthia M.; Hoek, Hans W.; Rissanen, Aila; Kaprio, Jaakko

2006-01-01

Objective: The objective of this study was to assess whether short self-report eating disorder screening questions are useful population screening methods. Method: We screened the female participants (N = 2881) from the 1975-1079 birth cohorts of Finnish twins for eating disorders, using several

Motivation and diabetes self-management.

Science.gov (United States)

Shigaki, Cheryl; Kruse, Robin L; Mehr, David; Sheldon, Kennon M; Bin Ge; Moore, Cherith; Lemaster, Joseph

2010-09-01

To examine the relationship between autonomous motivation and diabetes self-care activities among individuals with diabetes. Seventy-seven individuals recruited from outpatient clinic registries (64% female, 77% Caucasian, mean age 63 years) completed measures of diabetes-related self-care (Summary of Diabetes Self-care Activities), motivation (Treatment Self-regulation Questionnaire), health literacy (Rapid Estimate of Adult Literacy in Medicine, Newest Vital Sign), health (SF-36v2), social support (Social Support Survey) and self-efficacy (Perceived Competence Scale). Autonomous motivation was the only variable significantly associated with maintaining diet (pmotivation reported higher frequencies for maintaining diet and testing blood glucose, however, which supports the utility of Self-Determination Theory in promoting diabetes self-care.

The Mid-Atlantic Twin Registry, revisited.

Science.gov (United States)

Lilley, Emily C H; Silberg, Judy L

2013-02-01

The Mid-Atlantic Twin Registry (MATR) is a population-based registry of more than 56,000 twins primarily born or living in Virginia, North Carolina, and South Carolina. The MATR employs several methods of ascertaining twins, and devotes considerable resources to tracking and maintaining communication with MATR participants. Researchers may utilize the MATR for administration of research services including study recruitment, collection of DNA, archival data set creation, as well as data collection through mailed, phone, or online surveys. In addition, the MATR houses the MATR Repository, with over 1,200 blood samples available for researchers interested in DNA genotyping. For over 35 years MATR twins have participated in research studies with investigators from diverse scientific disciplines and various institutions. These studies, which have resulted in numerous publications, have covered a range of topics, including the human microbiome, developmental psychopathology, depression, anxiety, substance use, epigenetics of aging, children of twins, pre-term birth, social attitudes, seizures, eating disorders, as well as sleep homeostasis. Researchers interested in utilizing twins are encouraged to contact the MATR to discuss potential research opportunities.

[The pacemaker and implantable cardioverter-defibrillator registry of the Italian Association Arrhythmology Cardiac Pacing and cardiac pacing - annual report 2013].

Science.gov (United States)

Proclemer, Alessandro; Zecchin, Massimo; D'Onofrio, Antonio; Botto, Giovanni Luca; Rebellato, Luca; Ghidina, Marco; Bianco, Giulia; Bernardelli, Emanuela; Pucher, Elsa; Gregori, Dario

2014-11-01

The pacemaker (PM) and implantable cardioverter-defibrillator (ICD) Registry of the Italian Association of Arrhythmology and Cardiac Pacing (AIAC) monitors the main epidemiological data in real-world practice. The survey for the 2013 activity collects information about demographics, clinical characteristics, main indications for PM/ICD therapy and device types from the Italian collaborating centers. The Registry collects prospectively national PM and ICD implantation activity on the basis of European cards. PM Registry: data about 25 419 PM implantations were collected (19 134 first implant and 6285 replacements). The number of collaborating centers was 275. Median age of treated patients was 80 years (74 quartile I; 86 quartile III). ECG indications included atrioventricular conduction disorders in 43.6% of first PM implants, sick sinus syndrome in 24.7%, atrial fibrillation plus bradycardia in 12.9%, other in 18.8%. Among atrioventricular conduction defects, third-degree atrioventricular block was the most common type (23.2% of first implants). Use of single-chamber PMs was reported in 27.2% of first implants, of dual-chamber PMs in 62.6%, of PMs with cardiac resynchronization therapy (CRT) in 1.8%, and of single lead atrial-synchronized ventricular stimulation (VDD/R PMs) in 8.4%. ICD Registry: data about 16 519 ICD implantations were collected (11 474 first implants and 5045 replacements). The number of collaborating centers was 430. Median age of treated patients was 71 years (63 quartile I; 77 quartile III). Primary prevention indication was reported in 76% of first implants, secondary prevention in 24.0% (cardiac arrest in 7.8%). A single-chamber ICD was used in 27.2% of first implants, dual-chamber in 35.9% and biventricular in 36.8%. The PM and ICD Registry appears fundamental for monitoring PM and ICD utilization on a large national scale with rigorous examination of demographics and clinical indications. The PM Registry showed stable electrocardiographic

Modest associations between self-reported physical workload and neck trouble

DEFF Research Database (Denmark)

Holm, Jonas Winkel; Hartvigsen, Jan; Lings, Svend

2013-01-01

-based, cross-sectional questionnaire study using 3,208 monozygotic (MZ) and same-sexed dizygotic (DZ) twins aged 19-70. Twin pairs discordant for self-reported NT during the past year ("Any NT") were included. Self-reported physical workload in four categories was used as exposure ("sitting," "sitting......OBJECTIVES: To investigate the relationship between self-reported physical workload and neck trouble (NT) in twins. Additionally, to explore whether the relationship between physical workload and NT is influenced by genetic factors. METHODS: A twin control study was performed within a population...... and walking," "light physical," and "heavy physical" work). Paired analyses including conditional logistic regression were made for all participants and for each sex, and MZ and DZ pairs separately. RESULTS: No marked associations between physical workload and NT were seen. A moderate risk elevation in "heavy...

Mexican registry of pulmonary hypertension: REMEHIP.

Science.gov (United States)

Sandoval Zarate, Julio; Jerjes-Sanchez, Carlos; Ramirez-Rivera, Alicia; Zamudio, Tomas Pulido; Gutierrez-Fajardo, Pedro; Elizalde Gonzalez, Jose; Leon, Mario Seoane Garcia De; Gamez, Miguel Beltran; Abril, Francisco Moreno Hoyos; Michel, Rodolfo Parra; Aguilar, Humberto Garcia

REMEHIP is a prospective, multicentre registry on pulmonary hypertension. The main objective will be to identify the clinical profile, medical care, therapeutic trends and outcomes in adult and pediatric Mexican patients with well-characterized pulmonary hypertension. REMEHIP a multicenter registry began in 2015 with a planned recruitment time of 12 months and a 4-year follow-up. The study population will comprise a longitudinal cohort study, collecting data on patients with prevalent and incident pulmonary hypertension. Will be included patients of age >2 years and diagnosis of pulmonary hypertension by right heart catheterization within Group 1 and Group 4 of the World Health Organization classification. The structure, data collection and data analysis will be based on quality current recommendations for registries. The protocol has been approved by institutional ethics committees in all participant centers. All patients will sign an informed consent form. Currently in Mexico, there is a need of observational registries that include patients with treatment in the everyday clinical practice so the data could be validated and additional information could be obtained versus the one from the clinical trials. In this way, REMEHIP emerges as a link among randomized clinical trials developed by experts and previous Mexican experience. Copyright © 2016 Instituto Nacional de Cardiología Ignacio Chávez. Publicado por Masson Doyma México S.A. All rights reserved.

Concordance of self-report and measured height and weight of college students.

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Quick, Virginia; Byrd-Bredbenner, Carol; Shoff, Suzanne; White, Adrienne A; Lohse, Barbara; Horacek, Tanya; Kattelmann, Kendra; Phillips, Beatrice; Hoerr, Sharon L; Greene, Geoffrey

2015-01-01

This study examined associations between college students' self-report and measured height and weight. Participants (N = 1,686) were 77% white, 62% female, aged 18-24 years (mean ± SD, 19.1 ± 1.1 years), and enrolled at 8 US universities. Body mass index (BMI) was calculated for self-report (via online survey); trained researchers measured height and weight and categorized them as normal (18.5 to obese (30 to obese (≥ 35). Concordance of self-report vs objectively measured BMI groups using chi-square revealed that 93% were accurate, 4% were underestimated, and 2.7% were overestimated. Pearson correlations and adjusted linear regression revealed significant associations between self-report and measured BMI (r = .97; P students. Copyright © 2015 Society for Nutrition Education and Behavior. Published by Elsevier Inc. All rights reserved.

Relationship among knowledge acquisition, motivation to change, and self-efficacy in CME participants.

Science.gov (United States)

Williams, Betsy W; Kessler, Harold A; Williams, Michael V

2015-01-01

The relationship among an individual's sense of self-efficacy, motivation to change, barriers to change, and the implementation of improvement programs has been reported. This research reports the relationship among self-efficacy, motivation to change, and the acquisition of knowledge in a continuing medical education (CME) activity. The measure of individual sense of self-efficacy was a 4-item scale. The measure of motivation was a 6-item scale following on the work of Prochaska and colleagues. The knowledge acquisition was measured in a simple post measure. The participants were enrolled in a CME activity focused on HIV.  The CME activities had a significant effect on knowledge. Preliminary analysis demonstrates a relationship among the self-efficacy measure, the motivation to change measure, and global intent to change. Specifically, as reported earlier, the sense of efficacy in effecting change in the practice environment is predictive of a high level of motivation to change that, in turn, is predictive of formation of intent to change practice patterns. Interestingly, there were also relationships among the self-efficacy measure, the motivation to change measure, and knowledge acquisition. Finally, as expected, there was a significant relationship between knowledge and intent to change practice.  Further inspection of the motivation to change construct suggests that it mediates the self-efficacy constructs' effect on intent as well as its effect on knowledge acquisition. This new finding suggests that the proximal construct motivation completely masks an important underlying causal relationship that appears to contribute to practice change as well as learning following CME-self-efficacy. © 2015 The Alliance for Continuing Education in the Health Professions, the Society for Academic Continuing Medical Education, and the Council on Continuing Medical Education, Association for Hospital Medical Education.

Retrograde ascending aortic dissection during or after thoracic aortic stent graft placement: insight from the European registry on endovascular aortic repair complications

DEFF Research Database (Denmark)

Eggebrecht, Holger; Thompson, Matt; Rousseau, Hervé

2009-01-01

BACKGROUND: Single-center reports have identified retrograde ascending aortic dissection (rAAD) as a potentially lethal complication of thoracic endovascular aortic repair (TEVAR). METHODS AND RESULTS: Between 1995 and 2008, 28 centers participating in the European Registry on Endovascular Aortic...

Validity of self-reported sleep bruxism among myofascial temporomandibular disorder patients and controls.

Science.gov (United States)

Raphael, K G; Janal, M N; Sirois, D A; Dubrovsky, B; Klausner, J J; Krieger, A C; Lavigne, G J

2015-10-01

Sleep bruxism (SB), primarily involving rhythmic grinding of the teeth during sleep, has been advanced as a causal or maintenance factor for a variety of oro-facial problems, including temporomandibular disorders (TMD). As laboratory polysomnographic (PSG) assessment is extremely expensive and time-consuming, most research testing this belief has relied on patient self-report of SB. The current case-control study examined the accuracy of those self-reports relative to laboratory-based PSG assessment of SB in a large sample of women suffering from chronic myofascial TMD (n = 124) and a demographically matched control group without TMD (n = 46). A clinical research coordinator administered a structured questionnaire to assess self-reported SB. Participants then spent two consecutive nights in a sleep laboratory. Audiovisual and electromyographic data from the second night were scored to assess whether participants met criteria for the presence of 2 or more (2+) rhythmic masticatory muscle activity episodes accompanied by grinding sounds, moderate SB, or severe SB, using previously validated research scoring standards. Contingency tables were constructed to assess positive and negative predictive values, sensitivity and specificity, and 95% confidence intervals surrounding the point estimates. Results showed that self-report significantly predicted 2+ grinding sounds during sleep for TMD cases. However, self-reported SB failed to significantly predict the presence or absence of either moderate or severe SB as assessed by PSG, for both cases and controls. These data show that self-report of tooth grinding awareness is highly unlikely to be a valid indicator of true SB. Studies relying on self-report to assess SB must be viewed with extreme caution. © 2015 John Wiley & Sons Ltd.

Lung, Breast, and Prostate Cancer Patients with Unknown Ethnicity in US Department of Defense Cancer Registry Data: Comparisons to Patients with Known Ethnicity.

Science.gov (United States)

Lin, Jie; Kamamia, Christine; Shao, Stephanie; Brown, Derek; Rockswold, Paul D; Butts, Elizabeth; Shriver, Craig D; Zhu, Kangmin

2017-01-01

INTRODUCTION: Colorectal cancer (CRC) is one of the leading causes of cancer death for both men and women in the United States. Several factors can increase one’s risk of CRC, including a personal or family history of CRC, a diagnosis or family history of a hereditary colon cancer syndrome, or a diagnosis of chronic inflammatory bowel disease. The purpose of this project was to create a colorectal cancer registry (Co-Care) for individuals with a personal or family history of CRC, and those with disorders of the colon or rectum that are associated with an increased risk for developing CRC. METHODS: To be eligible for the registry, patients either had a personal or family history of CRC, a diagnosis or family history of Lynch syndrome, familial adenomatous polyposis, or a diagnosis of Crohn’s colitis or ulcerative colitis with dysplasia. Participants were recruited after seeing their gastroenterologist or genetic counselor, or after undergoing a full or partial colectomy at Mount Sinai Hospital in New York City. Eligible patients who agreed to participate were interviewed by a member of the research staff and asked a wide range of questions pertaining to CRC risk. RESULTS: A total of 224 patients were enrolled in the registry. Participants are mostly white, born in the United States, and married, with a bachelor’s or graduate degree, reporting an annual household income of $100,000 or more. The largest portion have a family history of CRC (27.2%), and almost half of participants are of Jewish descent (46.2%) and have undergone full or partial colectomy (48.2%). More than half of participants have neither received genetic counseling (54.5%) nor undergone genetic testing (59.7%). Only 3.6% report that they currently smoke cigarettes, and 41.1% consume alcohol at least once per week. Lastly, 18.3%, 10.3%, and 27.7% of participants report that they currently take aspirin, folic acid/folate pills or tablets, or calcium pills/tablets, respectively. CONCLUSIONS: This

Improvements in Health Behaviors, Eating Self-Efficacy, and Goal-Setting Skills Following Participation in Wellness Coaching.

Science.gov (United States)

Clark, Matthew M; Bradley, Karleah L; Jenkins, Sarah M; Mettler, Emily A; Larson, Brent G; Preston, Heather R; Liesinger, Juliette T; Werneburg, Brooke L; Hagen, Philip T; Harris, Ann M; Riley, Beth A; Olsen, Kerry D; Vickers Douglas, Kristin S

2016-07-01

Purpose . This project examined potential changes in health behaviors following wellness coaching. Design . In a single cohort study design, wellness coaching participants were recruited in 2011, data were collected through July 2012, and were analyzed through December 2013. Items in the study questionnaire used requested information about 11 health behaviors, self-efficacy for eating, and goal-setting skills. Setting . Worksite wellness center. Participants . One-hundred employee wellness center members with an average age of 42 years; 90% were female and most were overweight or obese. Intervention . Twelve weeks of in-person, one-on-one wellness coaching. Method . Participants completed study questionnaires when they started wellness coaching (baseline), after 12 weeks of wellness coaching, and at a 3-month follow-up. Results . From baseline to week 12, these 100 wellness coaching participants improved their self-reported health behaviors (11 domains, 0- to 10-point scale) from an average of 6.4 to 7.7 (p coaching.

Fear of falling and self-perception of health in older participants and non-participants of physical activity programs

Directory of Open Access Journals (Sweden)

Carolina Kruleske da Silva

2013-12-01

Full Text Available Fear of falling, self-perception of health, and participation in physical activity programs have been associated with several variables related to health and performance in older adults. The purpose of this study was to evaluate self-perception of health and fear of falling in older adult participants and non-participants of physical activity programs, and to verify the relationship between these variables. A total of 40 healthy but sedentary older adults, and 45 physically active older adults were assessed through the Falls Efficacy Scale International-Brazil (FES-I and a questionnaire that measured their self-perception of health. The older adults that did not participate in regular physical activity programs presented higher scores of fear of falling, which, in turn, is associated with an increase of risk for falls. Moreover, older adults, participants in regular physical activity programs exhibited a more positive health perception than did the non-participants. Also, non-participants of physical activity programs perceived their health status as being poor or very poor as well as expressing great concern about falling compared to those who considered their health as excellent, good or regular. The results of this study have important implications for making clinical decisions in prevention or rehabilitation of older people, and they justify recommendations to the public health system.

Conference Proceedings: “Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks”

Science.gov (United States)

Oster-Granite, Mary Lou; Parisi, Melissa A.; Abbeduto, Leonard; Berlin, Dorit S.; Bodine, Cathy; Bynum, Dana; Capone, George; Collier, Elaine; Hall, Dan; Kaeser, Lisa; Kaufmann, Petra; Krischer, Jeffrey; Livingston, Michelle; McCabe, Linda L.; Pace, Jill; Pfenninger, Karl; Rasmussen, Sonja A.; Reeves, Roger H.; Rubinstein, Yaffa; Sherman, Stephanie; Terry, Sharon F.; Whitten, Michelle Sie; Williams, Stephen; McCabe, Edward R.B.; Maddox, Yvonne T.

2011-01-01

A December 2010 meeting, “Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks,” was jointly sponsored by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH) in Bethesda, MD, and the Global Down Syndrome Foundation (GDSF)/Linda Crnic Institute for Down Syndrome based in Denver, CO. Approximately 70 attendees and organizers from various advocacy groups, federal agencies (Centers for Disease Control and Prevention, and various NIH Institutes, Centers, and Offices), members of industry, clinicians, and researchers from various academic institutions were greeted by Drs. Yvonne Maddox, Deputy Director of NICHD, and Edward McCabe, Executive Director of the Linda Crnic Institute for Down Syndrome. They charged the participants to focus on the separate issues of contact registries, research databases, and biobanks through both podium presentations and breakout session discussions. Among the breakout groups for each of the major sessions, participants were asked to generate responses to questions posed by the organizers concerning these three research resources as they related to Down syndrome and then to report back to the group at large with a summary of their discussions. This report represents a synthesis of the discussions and suggested approaches formulated by the group as a whole. PMID:21835664

Self-reported extracurricular activity, academic success, and quality of life in UK medical students.

Science.gov (United States)

Lumley, Sophie; Ward, Peter; Roberts, Lesley; Mann, Jake P

2015-09-19

To explore the relationship between academic performance, extracurricular activity, and quality of life at medical school in the UK to aid our understanding of students' work-life balance. A cross-sectional study, using an electronic questionnaire distributed to UK final year medical students across 20 medical schools (4478 students). Participants reported the hours of self-regulated learning and extracurricular activities undertaken each year at medical school; along with their academic decile (1 = highest, 10 = lowest). Self-reported quality of life (QoL) was assessed using an established screening tool (7 = highest, 1 = lowest). Seven hundred responses were obtained, across 20 participating medical schools, response rate 16% (700/4478). Factors associated with higher academic achievement were: graduate entry course students (2 deciles higher, p students attain higher decile scores despite similar self-reported duration of study.

Explaining engagement in self-monitoring among participants of the DESMOND Self-monitoring Trial: a qualitative interview study.

Science.gov (United States)

Eborall, Helen C; Dallosso, Helen M; McNicol, Sarah; Speight, Jane; Khunti, Kamlesh; Davies, Melanie J; Heller, Simon R

2015-10-01

The Diabetes Education and Self-Management for Ongoing and Newly Diagnosed (DESMOND) Self-monitoring Trial reported that people with newly diagnosed type 2 diabetes attending community-based structured education and randomized to self-monitoring of blood glucose (SMBG) or urine monitoring had comparable improvements in biomedical outcomes, but differences in satisfaction with, and continued use of monitoring method, well-being and perceived threat from diabetes. To explore experiences of SMBG and urine monitoring following structured education. We specifically addressed the perceived usefulness of each monitoring method and the associated well-being. Qualitative semi-structured interviews with 18 adults with newly diagnosed type 2 diabetes participating in the DESMOND Self-monitoring Trial (SMBG, N=10; urine monitoring, N=8)~12 months into the trial. Analysis was informed by the constant comparative approach. Interviewees reported SMBG as accurate, convenient and useful. Declining use was explained by having established a pattern of managing blood glucose with less frequent monitoring or lack of feedback or encouragement from health care professionals. Many initially positive views of urine monitoring progressively changed due to perceived inaccuracy, leading some to switch to SMBG. Perceiving diabetes as less serious was attributable to lack of symptoms, treatment with diet alone and-in the urine-monitoring group-consistently negative readings. Urine monitoring also provided less visible evidence of diabetes and of the effect of behaviour on glucose. The findings highlight the importance for professionals of considering patients' preferences when using self-monitoring technologies, including how these change over time, when supporting the self-care behaviours of people with type 2 diabetes. © The Author 2015. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Self-reported activity level and knee function in amateur football players

DEFF Research Database (Denmark)

Frobell, R B; Svensson, E; Göthrick, M

2008-01-01

) amateur football players in 10 football clubs from each division below national level participated in the study. Self-reported Tegner Activity Scale, and the Knee injury and Osteoarthritis Outcome Score (KOOS) are the main outcome measures. Older age, female gender and lower level of competition (football...... is recommended. We suggest that self-reported Tegner Activity Scale scores should be adjusted for age, gender and level of competition. In amateur football players, KOOS scores do not need adjustment for age and gender....

Integrating patient reported outcomes with clinical cancer registry data: a feasibility study of the electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) system.

Science.gov (United States)

Ashley, Laura; Jones, Helen; Thomas, James; Newsham, Alex; Downing, Amy; Morris, Eva; Brown, Julia; Velikova, Galina; Forman, David; Wright, Penny

2013-10-25

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.

Linked Registries: Connecting Rare Diseases Patient Registries through a Semantic Web Layer.

Science.gov (United States)

Sernadela, Pedro; González-Castro, Lorena; Carta, Claudio; van der Horst, Eelke; Lopes, Pedro; Kaliyaperumal, Rajaram; Thompson, Mark; Thompson, Rachel; Queralt-Rosinach, Núria; Lopez, Estrella; Wood, Libby; Robertson, Agata; Lamanna, Claudia; Gilling, Mette; Orth, Michael; Merino-Martinez, Roxana; Posada, Manuel; Taruscio, Domenica; Lochmüller, Hanns; Robinson, Peter; Roos, Marco; Oliveira, José Luís

2017-01-01

Patient registries are an essential tool to increase current knowledge regarding rare diseases. Understanding these data is a vital step to improve patient treatments and to create the most adequate tools for personalized medicine. However, the growing number of disease-specific patient registries brings also new technical challenges. Usually, these systems are developed as closed data silos, with independent formats and models, lacking comprehensive mechanisms to enable data sharing. To tackle these challenges, we developed a Semantic Web based solution that allows connecting distributed and heterogeneous registries, enabling the federation of knowledge between multiple independent environments. This semantic layer creates a holistic view over a set of anonymised registries, supporting semantic data representation, integrated access, and querying. The implemented system gave us the opportunity to answer challenging questions across disperse rare disease patient registries. The interconnection between those registries using Semantic Web technologies benefits our final solution in a way that we can query single or multiple instances according to our needs. The outcome is a unique semantic layer, connecting miscellaneous registries and delivering a lightweight holistic perspective over the wealth of knowledge stemming from linked rare disease patient registries.

A Comparison of College Athletic Participants and Nonparticipants of Self-Esteem.

Science.gov (United States)

Taylor, Donald L.

1995-01-01

College athletic participants and nonparticipants (n=651) were compared to determine whether participating in intercollegiate athletics affected self-esteem. College attendance was shown to have positive effect but was only significant in the senior year for participants. College athletic participation appeared to be one of many college…

The Role of Assistive Technology in Self-Perceived Participation

Science.gov (United States)

Ripat, Jacquie D.; Woodgate, Roberta L.

2012-01-01

The aim of this study was to develop an understanding of how assistive technology (AT) contributes to self-perceived participation for individuals with spinal cord injuries and to propose a revised definition of AT in light of the findings. A grounded theory study of 19 adults with spinal cord injuries was conducted. Participants engaged in…

Recruitment into diabetes prevention programs: what is the impact of errors in self-reported measures of obesity?

Science.gov (United States)

Hernan, Andrea; Philpot, Benjamin; Janus, Edward D; Dunbar, James A

2012-07-08

Error in self-reported measures of obesity has been frequently described, but the effect of self-reported error on recruitment into diabetes prevention programs is not well established. The aim of this study was to examine the effect of using self-reported obesity data from the Finnish diabetes risk score (FINDRISC) on recruitment into the Greater Green Triangle Diabetes Prevention Project (GGT DPP). The GGT DPP was a structured group-based lifestyle modification program delivered in primary health care settings in South-Eastern Australia. Between 2004-05, 850 FINDRISC forms were collected during recruitment for the GGT DPP. Eligible individuals, at moderate to high risk of developing diabetes, were invited to undertake baseline tests, including anthropometric measurements performed by specially trained nurses. In addition to errors in calculating total risk scores, accuracy of self-reported data (height, weight, waist circumference (WC) and Body Mass Index (BMI)) from FINDRISCs was compared with baseline data, with impact on participation eligibility presented. Overall, calculation errors impacted on eligibility in 18 cases (2.1%). Of n = 279 GGT DPP participants with measured data, errors (total score calculation, BMI or WC) in self-report were found in n = 90 (32.3%). These errors were equally likely to result in under- or over-reported risk. Under-reporting was more common in those reporting lower risk scores (Spearman-rho = -0.226, p-value recruit participants at moderate to high risk of diabetes, accurately categorising levels of overweight and obesity using self-report data. The results could be generalisable to other diabetes prevention programs using screening tools which include self-reported levels of obesity.

Predictable and SuStainable Implementation of National Cardiovascular Registries (PASSION) infrastructure: A think tank report from Medical Device Epidemiological Network Initiative (MDEpiNet).

Science.gov (United States)

Zeitler, Emily P; Al-Khatib, Sana M; Drozda, Joseph P; Kessler, Larry G; Kirtane, Ajay J; Kong, David F; Laschinger, John; Marinac-Dabic, Danica; Morice, Marie-Claude; Reed, Terrie; Sedrakyan, Art; Stein, Kenneth M; Tcheng, James; Krucoff, Mitchell W

2016-01-01

The MDEpiNet is a public-private partnership between the US Food and Drug Administration's Center for Devices and Radiological Health and participating partners. The PASSION program is an MDEpiNet-sponsored program that aims to demonstrate the goals of MDEpiNet by using cardiovascular medical device registries to bridge evidence gaps across the medical device total product life cycle. To this end, a PASSION Think Tank meeting took place in October 2014 in Silver Spring, MD, to facilitate discussion between stakeholders about the successes, challenges, and future novel applications of medical device registries, with particular emphasis on identifying pilot projects. Participants spanned a broad range of groups including patients, device manufacturers, regulators, physicians/academicians, professional societies, providers, and payers. The meeting focus included 4 areas of cardiovascular medicine intended to cultivate interest in 4 MDEpiNet disease-specific/device-specific working groups: coronary intervention, electrophysiology, valvular disease, and peripheral vascular disease. In addition, more general issues applying to registry-based infrastructure and analytical methodologies for assessing device benefit/risk were considered to provide context for the working groups as PASSION programs going forward. This article summarizes the discussions at the meeting and the future directions of the PASSION program. Copyright © 2015 Elsevier Inc. All rights reserved.

Predicting Adolescent Self-Esteem from Participation in School Sports among Latino Subgroups.

Science.gov (United States)

Erkut, Sumru; Tracy, Allison J.

2002-01-01

Data from a national longitudinal survey of secondary school students showed that participation in a school sport was associated with self-esteem among Mexican American boys and girls, Puerto Rican girls, and Cuban American boys. School attachment and physical well-being mediated the relationship between sports participation and self-esteem.…

Self-reported quality care for knee osteoarthritis

DEFF Research Database (Denmark)

Østerås, N; Jordan, K P; Clausen, B

2015-01-01

OBJECTIVES: To assess and compare patient perceived quality of osteoarthritis (OA) management in primary healthcare in Denmark, Norway, Portugal and the UK. METHODS: Participants consulting with clinical signs and symptoms of knee OA were identified in 30 general practices and invited to complete...... a cross-sectional survey including quality indicators (QI) for OA care. A QI was considered as eligible if the participant had checked 'Yes' or 'No', and as achieved if the participant had checked 'Yes' to the indicator. The median percentage (with IQR and range) of eligible QIs achieved by country...... was determined and compared in negative binominal regression analysis. Achievement of individual QIs by country was determined and compared using logistic regression analyses. RESULTS: A total of 354 participants self-reported QI achievement. The median percentage of eligible QIs achieved (checked 'Yes') was 48...

[Registries for rare diseases : OSSE - An open-source framework for technical implementation].

Science.gov (United States)

Storf, Holger; Schaaf, Jannik; Kadioglu, Dennis; Göbel, Jens; Wagner, Thomas O F; Ückert, Frank

2017-05-01

Meager amounts of data stored locally, a small number of experts, and a broad spectrum of technological solutions incompatible with each other characterize the landscape of registries for rare diseases in Germany. Hence, the free software Open Source Registry for Rare Diseases (OSSE) was created to unify and streamline the process of establishing specific rare disease patient registries. The data to be collected is specified based on metadata descriptions within the registry framework's so-called metadata repository (MDR), which was developed according to the ISO/IEC 11179 standard. The use of a central MDR allows for sharing the same data elements across any number of registries, thus providing a technical prerequisite for making data comparable and mergeable between registries and promoting interoperability.With OSSE, the foundation is laid to operate linked patient registries while respecting strong data protection regulations. Using the federated search feature, data for clinical studies can be identified across registries. Data integrity, however, remains intact since no actual data leaves the premises without the owner's consent. Additionally, registry solutions other than OSSE can participate via the OSSE bridgehead, which acts as a translator between OSSE registry networks and non-OSSE registries. The pseudonymization service Mainzelliste adds further data protection.Currently, more than 10 installations are under construction in clinical environments (including university hospitals in Frankfurt, Hamburg, Freiburg and Münster). The feedback given by the users will influence further development of OSSE. As an example, the installation process of the registry for undiagnosed patients at University Hospital Frankfurt is described in more detail.

Self-Management Education Participation Among US Adults With Arthritis: Who's Attending?

Science.gov (United States)

Murphy, Louise B; Brady, Teresa J; Boring, Michael A; Theis, Kristina A; Barbour, Kamil E; Qin, Jin; Helmick, Charles G

2017-09-01

Self-management education (SME) programs teach people with chronic conditions skills to manage their health conditions. We examined patterns in SME program participation among US adults with arthritis ages ≥18 years. Respondents with arthritis were those who reported ever being diagnosed with arthritis by a doctor or health care provider. We analyzed 2014 National Health Interview Survey data to estimate the percentage (unadjusted and age-standardized) who ever attended an SME program overall and for selected subgroups, representativeness of SME participants relative to all adults with arthritis, and trends in SME course participation. In 2014, 1 in 9 US adults with arthritis (11.3% [95% confidence interval (95% CI) 10.4-12.3]; age-standardized 11.4% [95% CI 10.0-12.9]) had ever participated in an SME program. SME participation (age-standardized) was highest among those with ≥8 health care provider visits in the past 12 months (16.0% [95% CI 13.1-19.4]). Since 2002, the number of adults with arthritis who have ever participated in SME has increased by 1.7 million, but the percentage has remained constant. Despite its many benefits, SME participation among US adults with arthritis remains persistently low. By recommending that their patients attend SME programs, health care providers can increase the likelihood that their patients experience SME program benefits. © 2016, American College of Rheumatology.

Self-reported adherence and biomarker levels of CoQ10 and alpha-tocopherol

Directory of Open Access Journals (Sweden)

Vitolins MZ

2018-04-01

Full Text Available Mara Z Vitolins,1 L Douglas Case,1 Stephen R Rapp,2 Mark O Lively,3 Edward G Shaw,4 Michelle J Naughton,5 Jeffrey Giguere,6 Glenn J Lesser7 1Division of Public Health Sciences, Wake Forest School of Medicine, Winston-Salem, NC, USA; 2Department of Psychiatry and Behavioral Medicine, Wake Forest School of Medicine, Winston-Salem, NC, USA; 3Department of Biochemistry, Wake Forest School of Medicine, Winston-Salem, NC, USA; 4Department of Internal Medicine-Gerontology and Geriatric Medicine, Wake Forest School of Medicine, Winston-Salem, NC, USA; 5Department of Internal Medicine, The Ohio State University, Columbus, OH, USA; 6Greenville Community Oncology Research Program of the Carolinas, Greenville, SC, USA; 7Department of Internal Medicine-Hematology and Oncology, Wake Forest School of Medicine, Medical Center Boulevard, Winston-Salem, NC, USA Purpose: Women with breast cancer were randomized to receive coenzyme Q10 (CoQ10 plus Vitamin E or placebo in a clinical trial. The objective of this evaluation is to examine the association between participant self-reported adherence to the study supplements and changes in plasma biomarker levels.Patients and methods: Correlation coefficients quantified the association between changes in alpha-tocopherol and CoQ10 levels and the association between self-reported adherence and changes in biomarkers. Participants were categorized by self-reported adherence; Kruskal–Wallis tests compared changes in alpha-tocopherol and CoQ10 levels between self-reported adherence groups.Results: Women (N=155 provided baseline and post-treatment biomarkers; 147 completed at least one diary. While changes in alpha-tocopherol and CoQ10 levels were moderately correlated, correlations ranged from 0.40 to 0.48, association between self-reported adherence and plasma alpha-tocopherol or CoQ10 levels was weak; correlations ranged from 0.10 to 0.29 at weeks 8, 16, and 24. Some participants with high self-reported adherence actually

Occupational Disease Registries-Characteristics and Experiences.

Science.gov (United States)

Davoodi, Somayeh; Haghighi, Khosro Sadeghniat; Kalhori, Sharareh Rostam Niakan; Hosseini, Narges Shams; Mohammadzadeh, Zeinab; Safdari, Reza

2017-06-01

Due to growth of occupational diseases and also increase of public awareness about their consequences, attention to various aspects of diseases and improve occupational health and safety has found great importance. Therefore, there is the need for appropriate information management tools such as registries in order to recognitions of diseases patterns and then making decision about prevention, early detection and treatment of them. These registries have different characteristics in various countries according to their occupational health priorities. Aim of this study is evaluate dimensions of occupational diseases registries including objectives, data sources, responsible institutions, minimum data set, classification systems and process of registration in different countries. In this study, the papers were searched using the MEDLINE (PubMed) Google scholar, Scopus, ProQuest and Google. The search was done based on keyword in English for all motor engines including "occupational disease", "work related disease", "surveillance", "reporting", "registration system" and "registry" combined with name of the countries including all subheadings. After categorizing search findings in tables, results were compared with each other. Important aspects of the registries studied in ten countries including Finland, France, United Kingdom, Australia, Czech Republic, Malaysia, United States, Singapore, Russia and Turkey. The results show that surveyed countries have statistical, treatment and prevention objectives. Data sources in almost the rest of registries were physicians and employers. The minimum data sets in most of them consist of information about patient, disease, occupation and employer. Some of countries have special occupational related classification systems for themselves and some of them apply international classification systems such as ICD-10. Finally, the process of registration system was different in countries. Because occupational diseases are often

Youth Self-Report of Physical and Sexual Abuse: A Latent Class Analysis

Science.gov (United States)

Nooner, Kate B.; Litrownik, Alan J.; Thompson, Richard; Margolis, Benjamin; English, Diana J.; Knight, Elizabeth D.; Everson, Mark D.; Roesch, Scott

2010-01-01

Objective: To determine if meaningful groups of at-risk pre-adolescent youth could be identified based on their self-report of physical and sexual abuse histories. Methods: Youth participating in a consortium of ongoing longitudinal studies were interviewed using an audio-computer assisted self-interview (A-CASI) when they were approximately 12…

Semen says: assessing the accuracy of adolescents' self-reported sexual abstinence using a semen Y-chromosome biomarker.

Science.gov (United States)

Rosenbaum, Janet E; Zenilman, Jonathan M; Rose, Eve; Wingood, Gina M; DiClemente, Ralph J

2017-03-01

Researchers often assess condom use only among participants who report recent sexual behaviour, excluding participants who report no recent vaginal sex or who did not answer questions about their sexual behaviour, but self-reported sexual behaviour may be inaccurate. This study uses a semen Y-chromosome biomarker to assess semen exposure among participants who reported sexual abstinence or did not report their sexual behaviour. This prospective cohort study uses data from 715 sexually active African-American female adolescents in Atlanta, surveyed at baseline, 6 months and 12 months. Participants completed a 40 min interview and were tested for semen Y-chromosome with PCR from a self-administered vaginal swab. We predicted Y-chromosome test results from self-reported sexual behaviour using within-subject panel regression. Among the participants who reported abstinence from vaginal sex in the past 14 days, 9.4% tested positive for semen Y-chromosome. Among item non-respondents, 6.3% tested positive for semen Y-chromosome. Women who reported abstinence and engaged in item non-response regarding their sexual behaviour had respectively 62% and 78% lower odds of testing positive for Y-chromosome (OR 0.38 (0.21 to 0.67), OR 0.22 (0.12 to 0.40)), controlling for smoking, survey wave and non-coital sexual behaviours reported during abstinence. Adolescents who report sexual abstinence under-report semen exposure. Research should validate self-reported sexual behaviour with biomarkers. Adolescents who engage in item non-response regarding vaginal sex test positive for semen Y-chromosome at similar rates, which supports the practice of grouping non-respondents with adolescents reporting abstinence in statistical analysis. NCT00633906. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Summary of data held by the National Registry for Radiation Workers

CERN Document Server

Saw, G M A

1985-01-01

This supplement to NRPB-R116 (Protocol for the National Registry for Radiation Workers) summarises the data held by the National Registry for Radiation Workers) at the end of 1983. It follows the form of the first supplement which described the data base at the end of 1981. The total population for which agreement has been reached with the participating organisations is about 68,000. Over 86% of these have ben registered, arrangements are in hand to include most of the remainder. Only 2% of the population have refused to participate as individuals. Although some information is still outstanding, there has been a considerable improvement since 1981. More details are given for each of the participating organisations. Further supplements will be issued from time to time as more data are received.

Relations Between Self-Reported and Linguistic Monitoring Assessments of Affective Experience in an Extreme Environment.

Science.gov (United States)

Smith, Nathan

2018-03-01

Approaches for monitoring psychosocial health in challenging environments are needed to maintain the performance and safety of personnel. The purpose of the present research was to examine the relationship between 2 candidate methods (self-reported and linguistics) for monitoring affective experience during extreme environment activities. A single-subject repeated-measures design was used in the present work. The participant was a 46-year-old individual scheduled to complete a self-supported ski expedition across Arctic Greenland. The expedition lasted 28 days, and conditions included severe cold, low stimulation, whiteouts, limited habitability, and threats to life and limb. During the expedition, the participant completed a daily self-report log including assessment of psychological health (perceptions of control and affect) and a video diary (emotion). Video diary entries were subjected to linguistic inquiry and word count analyses before the links between self-report and linguistic data across the expedition period were tested. Similarities in the pattern of self-reported and linguistic assessments emerged across the expedition period. A number of predictable correlations were identified between self-reported and linguistic assessments of affective/emotional experience. Overall, there was better agreement between self-reports and linguistic analytics for indicators of negative affect/emotion. Future research should build on this initial study to further test the links between self-reported affect and emotional states monitored via linguistics. This could help develop methods for monitoring psychological health in extreme environments and support organizational decision making. Crown Copyright © 2017. Published by Elsevier Inc. All rights reserved.

Borderline but not antisocial personality disorder symptoms are related to self-reported partner aggression in late middle-age.

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Weinstein, Yana; Gleason, Marci E J; Oltmanns, Thomas F

2012-08-01

We examined the relationship between personality pathology and the frequency of self-reported psychological and physical partner aggression in a community sample of 872 adults aged 55-64. Previous research suggests that antisocial and borderline personality disorder (PD) symptoms are associated with partner aggression. Controlling for gender, education, alcohol dependence, and other personality pathology, we found that borderline PD symptoms, which include abandonment fears, unstable identity, and affective instability, were significantly related to the frequency of self-reported aggression toward one's partner. This relationship was observed regardless of whether the participant's personality was described by a clinical interviewer, the participant themselves, or an informant chosen by the participant. Further, the relationship between borderline PD symptoms and self-reported partner aggression was moderated by gender such that women were driving the association. Conversely, antisocial PD symptoms, which include deceitfulness, irresponsibility, disregard for rules, and lack of remorse did not significantly account for variance in self-reported partner aggression. PsycINFO Database Record (c) 2012 APA, all rights reserved.

Clinical Case Registries (CCR)

Data.gov (United States)

Department of Veterans Affairs — The Clinical Case Registries (CCR) replaced the former Immunology Case Registry and the Hepatitis C Case Registry with local and national databases. The CCR:HIV and...

Psychological impact of unexpected explicit recall of events occurring during surgery performed under sedation, regional anaesthesia, and general anaesthesia: data from the Anesthesia Awareness Registry.

Science.gov (United States)

Kent, C D; Mashour, G A; Metzger, N A; Posner, K L; Domino, K B

2013-03-01

Anaesthetic awareness is a recognized complication of general anaesthesia (GA) and is associated with post-traumatic stress disorder (PTSD). Although complete amnesia for intraprocedural events during sedation and regional anaesthesia (RA) may occur, explicit recall is expected by anaesthesia providers. Consequently, the possibility that there could be psychological consequences associated with unexpected explicit recall of events during sedation and RA has not been investigated. This study investigated the psychological sequelae of unexpected explicit recall of events during sedation/RA that was reported to the Anesthesia Awareness Registry. The Registry recruited subjects who self-identified as having had anaesthetic awareness. Inclusion criteria were a patient-reported awareness experience in 1990 or later and availability of medical records. The sensations experienced by the subjects during their procedure and the acute and persistent psychological sequelae attributed to this explicit recall were assessed for patients receiving sedation/RA and those receiving GA. Among the patients fulfilling the inclusion criteria, medical record review identified 27 sedation/RA and 50 GA cases. Most patients experienced distress (78% of sedation/RA vs 94% of GA). Approximately 40% of patients with sedation/RA had persistent psychological sequelae, similar to GA patients. Some sedation/RA patients reported an adverse impact on their job performance (15%), family relationships (11%), and friendships (11%), and 15% reported being diagnosed with PTSD. Patients who self-reported to the Registry unexpected explicit recall of events during sedation/RA experienced distress and persistent psychological sequelae comparable with those who had reported anaesthetic awareness during GA. Further study is warranted to determine if patients reporting distress with explicit recall after sedation/RA require psychiatric follow-up.

United States Transuranium and Uranium Registries. Annual report October 1, 1994 - September 30, 1995

Energy Technology Data Exchange (ETDEWEB)

Kathren, R.L.; Harwick, L.A.; Markel, M.J.

1996-07-01

The United States Transuranium and Uranium Registries (USTUR) comprise a human tissue research program studying the deposition, biokinetics and dosimetry of the actinide elements in humans with the primary goals of providing data fundamental to the verification, refinement, or future development of radiation protection standards for these and other radionuclides, and of determining possible bioeffects on both a macro and subcellular level attributable to exposure to the actinides. This report covers USTUR activities during the year from October 1994 through September 1995.

United States Transuranium and Uranium Registries. Annual report February 1, 2000--January 31, 2001

Energy Technology Data Exchange (ETDEWEB)

Ehrhart, Susan M. (ed.); Filipy, Ronald E. (ed.)

2001-07-01

The United States Transuranium and Uranium Registries (USTUR) comprise a human tissue research program studying the deposition, biokinetics and dosimetry of the actinide elements in humans with the primary goals of providing data fundamental to the verification, refinement, or future development of radiation protection standards for these and other radionuclides, and of determining possible bioeffects on both a macro and subcellular level attributable to exposure to the actinides. This report covers USTUR activities during the year from February 2000 through January 2001.

United States Transuranium and Uranium Registries. Annual report February 1, 2000-January 31, 2001

International Nuclear Information System (INIS)

Ehrhart, Susan M.; Filipy, Ronald E.

2001-01-01

The United States Transuranium and Uranium Registries (USTUR) comprise a human tissue research program studying the deposition, biokinetics and dosimetry of the actinide elements in humans with the primary goals of providing data fundamental to the verification, refinement, or future development of radiation protection standards for these and other radionuclides, and of determining possible bioeffects on both a macro and subcellular level attributable to exposure to the actinides. This report covers USTUR activities during the year from February 2000 through January 2001

Development and validation of a new self-report measure of pain behaviors.

Science.gov (United States)

Cook, Karon F; Keefe, Francis; Jensen, Mark P; Roddey, Toni S; Callahan, Leigh F; Revicki, Dennis; Bamer, Alyssa M; Kim, Jiseon; Chung, Hyewon; Salem, Rana; Amtmann, Dagmar

2013-12-01

Pain behaviors that are maintained beyond the acute stage after injury can contribute to subsequent psychosocial and physical disability. Critical to the study of pain behaviors is the availability of psychometrically sound pain behavior measures. In this study we developed a self-report measure of pain behaviors, the Pain Behaviors Self Report (PaB-SR). PaB-SR scores were developed using item response theory and evaluated using a rigorous, multiple-witness approach to validity testing. Participants included 661 survey participants with chronic pain and with multiple sclerosis, back pain, or arthritis; 618 survey participants who were significant others of a chronic pain participant; and 86 participants in a videotaped pain behavior observation protocol. Scores on the PaB-SR were found to be measurement invariant with respect to clinical condition. PaB-SR scores, observer reports, and the videotaped protocol yielded distinct, but convergent views of pain behavior, supporting the validity of the new measure. The PaB-SR is expected to be of substantial utility to researchers wishing to explore the relationship between pain behaviors and constructs such as pain intensity, pain interference, and disability. Copyright © 2013 International Association for the Study of Pain. Published by Elsevier B.V. All rights reserved.

Feasibility test of a UK-scalable electronic system for regular collection of patient-reported outcome measures and linkage with clinical cancer registry data: The electronic Patient-reported Outcomes from Cancer Survivors (ePOCS system

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Velikova Galina

2011-10-01

Full Text Available Abstract Background Cancer survivors can face significant physical and psychosocial challenges; there is a need to identify and predict which survivors experience what sorts of difficulties. As highlighted in the UK National Cancer Survivorship Initiative, routine post-diagnostic collection of patient reported outcome measures (PROMs is required; to be most informative, PROMs must be linked and analysed with patients' diagnostic and treatment information. We have designed and built a potentially cost-efficient UK-scalable electronic system for collecting PROMs via the internet, at regular post-diagnostic time-points, for linking these data with patients' clinical data in cancer registries, and for electronically managing the associated patient monitoring and communications; the electronic Patient-reported Outcomes from Cancer Survivors (ePOCS system. This study aims to test the feasibility of the ePOCS system, by running it for 2 years in two Yorkshire NHS Trusts, and using the Northern and Yorkshire Cancer Registry and Information Service. Methods/Design Non-metastatic breast, colorectal and prostate cancer patients (largest survivor groups, within 6 months post-diagnosis, will be recruited from hospitals in the Yorkshire Cancer Network. Participants will be asked to complete PROMS, assessing a range of health-related quality-of-life outcomes, at three time-points up to 15 months post-diagnosis, and subsequently to provide opinion on the ePOCS system via a feedback questionnaire. Feasibility will be examined primarily in terms of patient recruitment and retention rates, the representativeness of participating patients, the quantity and quality of collected PROMs data, patients' feedback, the success and reliability of the underpinning informatics, and the system running costs. If sufficient data are generated during system testing, these will be analysed to assess the health-related quality-of-life outcomes reported by patients, and to explore

Differences in Investigator-Initiated Trials between Japan and Other Countries: Analyses of Clinical Trials Sponsored by Academia and Government in the ClinicalTrials.gov Registry and in the Three Japanese Registries.

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Tatsuya Ito

Full Text Available Following the amendment of the Pharmaceutical Affairs Law in Japan in 2003 researchers were permitted to begin investigator-initiated trials (IITs. In subsequent years, however, the number of IITs remained low. In other countries in Asia as well as in Europe, North America, and South Africa, the number of IITs has increased over the past decade. The differences in the characteristics of IITs between Japan and other countries are unknown. Some studies have analyzed the characteristics of all clinical trials according to registry databases, but there has been less research focusing on IITs.The purpose of this study is to analyze the characteristics of IITs in the ClinicalTrials.gov registry and in the three Japanese registries, to identify differences in IITs between Japan and other countries.Using Thomson Reuters Pharma™, trials sponsored by academia and government as IITs in 2010 and registered in ClinicalTrials.gov were identified. IITs from 2004 to 2012 in Japan were identified in the three Japanese registries: the University Hospital Medical Information Network Clinical Trials Registry, the Japan Pharmaceutical Information Center Clinical Trials Information, and the Japan Medical Association Center for Clinical Trials, Clinical Trials Registry. Characterization was made of the trial purposes, phases, participants, masking, arms, design, controls, and other data.New and revised IITs registered in ClinicalTrials.gov during 2010 averaged about 40% of all sponsor-identified trials. IITs were nearly all early-phase studies with small numbers of participants. A total of 56 Japanese IITs were found over a period of 8 years, and these were also almost nearly all early-phase studies with small numbers of participants.There appear to be no great differences between Japan and other countries in terms of characteristics of IITs. These results should prompt a new review of the IIT environment in Japan.

Towards a national trauma registry for the United Arab Emirates

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Barka Ezedin

2010-07-01

Full Text Available Abstract Background Trauma is a major health problem in the United Arab Emirates (UAE as well as worldwide. Trauma registries provide large longitudinal databases for analysis and policy improvement. We aim in this paper to report on the development and evolution of a national trauma registry using a staged approach by developing a single-center registry, a two-center registry, and then a multi-center registry. The three registries were established by developing suitable data collection forms, databases, and interfaces to these databases. The first two registries collected data for a finite period of time and the third is underway. The steps taken to establish these registries depend on whether the registry is intended as a single-center or multi-center registry. Findings Several issues arose and were resolved during the development of these registries such as the relational design of the database, whether to use a standalone database management system or a web-based system, and the usability and security of the system. The inclusion of preventive medicine data elements is important in a trauma registry and the focus on road traffic collision data elements is essential in a country such as the UAE. The first two registries provided valuable data which has been analyzed and published. Conclusions The main factors leading to the successful establishment of a multi-center trauma registry are the development of a concise data entry form, development of a user-friendly secure web-based database system, the availability of a computer and Internet connection in each data collection center, funded data entry personnel well trained in extracting medical data from the medical record and entering it into the computer, and experienced personnel in trauma injuries and data analysis to continuously maintain and analyze the registry.

Does Self-Esteem Have an Interpersonal Imprint Beyond Self-Reports? A Meta-Analysis of Self-Esteem and Objective Interpersonal Indicators.

Science.gov (United States)

Cameron, Jessica J; Granger, Steve

2018-02-01

Self-esteem promises to serve as the nexus of social experiences ranging from social acceptance, interpersonal traits, interpersonal behavior, relationship quality, and relationship stability. Yet previous researchers have questioned the utility of self-esteem for understanding relational outcomes. To examine the importance of self-esteem for understanding interpersonal experiences, we conducted systematic meta-analyses on the association between trait self-esteem and five types of interpersonal indicators. To ensure our results were not due to self-esteem biases in perception, we focused our meta-analyses to 196 samples totaling 121,300 participants wherein researchers assessed interpersonal indicators via outsider reports. Results revealed that the association between self-esteem and the majority of objective interpersonal indicators was small to moderate, lowest for specific and distal outcomes, and moderated by social risk. Importantly, a subset of longitudinal studies suggests that self-esteem predicts later interpersonal experience. Our results should encourage researchers to further explore the link between self-esteem and one's interpersonal world.

Self-Reporting Tool On Pain in People with Intellectual Disabilities (STOP-ID!): a Usability Study.

Science.gov (United States)

de Knegt, Nanda C; Lobbezoo, Frank; Schuengel, Carlo; Evenhuis, Heleen M; Scherder, Erik J A

2016-01-01

The use of the Self-reporting Tool On Pain in people with Intellectual Disabilities (STOP-ID!), an online application developed by the authors to aid in the self-reporting of pain, was evaluated in 40 adults with Down syndrome. Comprehension of the use of the tool (the ability to recognize representations for vocabulary and pain, and to navigate the tool interface), and the use of the tool to self-report pain experience, were investigated. The use of the online tool was investigated with both a laptop and a tablet computer in a crossover design. The results provide evidence that more participants recognized representations of pain location and pain affect than representations of pain intensity and pain quality. A small percentage of participants demonstrated the ability to recognize all of the representations of vocabulary items and to navigate the tool without assistance (18% laptop, 18% tablet). Half of the participants were able to report at least one pain component of a current or remembered pain experience without assistance (50% laptop, 53% tablet). Ways to improve the design of tools for reporting pain and to improve performance are suggested.

Determining the Accuracy of Self-Report Versus Informant-Report Using the Conners' Adult ADHD Rating Scale.

Science.gov (United States)

Alexander, Lisa; Liljequist, Laura

2016-04-01

The present research examined the validity of self-report versus informant-report in relation to a performance-based indicator of adult ADHD. Archival data from 118 participants (52 males, 66 females) were used to compare Conners' Adult ADHD Rating Scale-Self-Report: Long Format (CAARS-S:L) and Conners' Adult ADHD Rating Scale-Observer Report: Long Format (CAARS-O:L) with discrepancy scores calculated between the Wechsler Adult Intelligence Scale-Third Edition (WAIS-III) Verbal Comprehension Index - Working Memory Index (VCI - WMI) and Perceptual-Organizational Index - Processing Speed Index (POI - PSI) scaled scores. Neither the self- nor informant-report formats of the CAARS were better predictors of discrepancies between WAIS-III Index scores. Intercorrelations between the CAARS-S:L and CAARS-O:L revealed generally higher correlations between the same scales of different formats and among scales measuring externally visible symptoms. Furthermore, regression analysis indicated that both the CAARS-S:L and CAARS-O:L clinical scales contributed a significant proportion of variance in WAIS-III VCI - WMI discrepancy scores (14.7% and 16.4%, respectively). Results did not establish greater accuracy of self-report versus informant-report of ADHD symptomatology, rather demonstrate the need for multimodal assessment of ADHD in adults. © The Author(s) 2013.

Major adverse cardiac and cerebrovascular events after the ross procedure: A report from the german-dutch ross registry

NARCIS (Netherlands)

H. Sievers (Hans Hinrich); U. Stierle (Ulrich); E.I. Charitos (Efstratios); T. Hanke; M. Misfeld (Martin); J.F.M. Bechtel (Matthias); A. Gorski (Armin); U.F. Franke (Ulrich); B. Graf (Bernhard); D.R. Robinson (Derek); A.J.J.C. Bogers (Ad); A. Dodge-Khatami (Ali); J.O. Boehm (Juergen); J.G. Rein (Joachim); C.A. Botha (Cornelius); R. Lange (Rüdiger); J. Hoerer (Juergen); A. Moritz (Anton); T. Wahlers (Thorsten); M. Breuer (Martin); K. Ferrari-Kuehne (Katharina); R. Hetzer (Roland); M. Huebler (Michael); G. Ziemer (Gerhard); J.J.M. Takkenberg (Hanneke); W. Hemmer

2010-01-01

textabstractBackground-: The purpose of the study is to report major cardiac and cerebrovascular events after the Ross procedure in the large adult and pediatric population of the German-Dutch Ross registry. These data could provide an additional basis for discussions among physicians and a source

Self-Reported Knee Symptoms Assessed by KOOS Questionnaire in Downhill Runners (Skyrunners.

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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.

Longitudinal Assessment of Self-Harm Statements of Youth in Foster Care: Rates, Reporters, and Related Factors.

Science.gov (United States)

Gabrielli, Joy; Hambrick, Erin P; Tunno, Angela M; Jackson, Yo; Spangler, Amanda; Kanine, Rebecca M

2015-12-01

Self-harm in youth is a risk factor related to mental health and future morbidity, yet, relatively little is known about the rates and course of self-harm in youth residing in foster care. This study examined self-harm talk in foster youth based on caregiver and child report for 135 children between the ages of 8- and 11-years old. Longitudinal data on course of self-harm talk from both youth and caregivers also are provided. Caregivers identified that 24% of youth participants had disclosed a desire to die or to hurt themselves. Youth self-report revealed that 21% of children indicated a desire for self-harm, and rates of self-harm from both reporters decreased over time. While overall rates were similar across reporters, findings show discrepancies between youth self-report and caregiver report within individuals. Also, caregivers for youth in residential facilities were more likely to report youth self-harm talk than caregivers from foster home settings.

The Western Denmark Heart Registry

DEFF Research Database (Denmark)

Schmidt, Morten; Maeng, Michael; Madsen, Morten

2018-01-01

The WDHR (Western Denmark Heart Registry) is a seminational, multicenter-based registry with longitudinal registration of detailed patient and procedure data since 1999. The registry includes as of January 1, 2017 approximately 240,000 coronary angiographies, 90,000 percutaneous coronary interven......The WDHR (Western Denmark Heart Registry) is a seminational, multicenter-based registry with longitudinal registration of detailed patient and procedure data since 1999. The registry includes as of January 1, 2017 approximately 240,000 coronary angiographies, 90,000 percutaneous coronary...

[Pilot testing of an internet based pregnancy planning study "Snart-gravid.dk"].

Science.gov (United States)

Mikkelsen, Ellen M; Maindal, Helle Terkildsen

2011-01-01

Before launching a new study pilot testing is often recommended, however, it is seldom described in depth. Here, we report extensively on a pilot study using the internet as a new method for recruitment and data collection in a prospective cohort study of women planning a pregnancy.We aimed to enroll 2500 participants in six months and attained more than 75 % after 12 months follow up. To test data completeness and validity we randomized participants to fill either a long or a short version of the baseline questionnaire and compared self reported data with registry based data.We succeeded in enrolling 2288 participants, and participation rate was 82 % after 12 months. We found high correlations (0.96) for self-reported vs. registry based data and no difference in participation rate or data completeness according to questionnaire length. Overall, the internet based methods seem promising and we plan to launch the full study.

Characterization and utilization of an international neurofibromatosis web-based, patient-entered registry: An observational study.

Science.gov (United States)

Seidlin, Mindell; Holzman, Robert; Knight, Pamela; Korf, Bruce; Rangel Miller, Vanessa; Viskochil, David; Bakker, Annette

2017-01-01

The neurofibromatoses (neurofibromatosis type 1, neurofibromatosis type 2 and schwannomatosis) are rare disorders having clinical manifestations that vary greatly from patient to patient. The rarity and variability of these disorders has made it challenging for investigators to identify sufficient numbers of patients with particular clinical characteristics or specific germline mutations for participation in interventional studies. Similarly, because the natural history of all types of neurofibromatosis (NF) is variable and unique for each individual, it is difficult to identify meaningful clinical outcome measures for potential therapeutic interventions. In 2012, the Children's Tumor Foundation created a web-based patient-entered database, the NF Registry, to inform patients of research opportunities for which they fit general eligibility criteria and enable patients to contact investigators who are seeking to enroll patients in approved trials. Registrants were recruited through CTF-affiliated NF clinics and conferences, through its website, and by word-of-mouth and social media. Following online consent, demographic information and details regarding manifestations of NF were solicited on the Registry website. Statistical analyses were performed on data from a cohort of 4680 registrants (the number of registrants as of October 9, 2015) who met diagnostic criteria for one of the 3 NF conditions. The analyses support our hypothesis that patient-reported symptom incidences in the NF Registry are congruent with published clinician-sourced data. Between April 26, 2013 and July 8, 2016, the registry has been useful to investigators in recruitment, particularly for observational trials, especially those for development of patient-reported outcomes.

Characterization and utilization of an international neurofibromatosis web-based, patient-entered registry: An observational study.

Directory of Open Access Journals (Sweden)

Mindell Seidlin

Full Text Available The neurofibromatoses (neurofibromatosis type 1, neurofibromatosis type 2 and schwannomatosis are rare disorders having clinical manifestations that vary greatly from patient to patient. The rarity and variability of these disorders has made it challenging for investigators to identify sufficient numbers of patients with particular clinical characteristics or specific germline mutations for participation in interventional studies. Similarly, because the natural history of all types of neurofibromatosis (NF is variable and unique for each individual, it is difficult to identify meaningful clinical outcome measures for potential therapeutic interventions. In 2012, the Children's Tumor Foundation created a web-based patient-entered database, the NF Registry, to inform patients of research opportunities for which they fit general eligibility criteria and enable patients to contact investigators who are seeking to enroll patients in approved trials. Registrants were recruited through CTF-affiliated NF clinics and conferences, through its website, and by word-of-mouth and social media. Following online consent, demographic information and details regarding manifestations of NF were solicited on the Registry website. Statistical analyses were performed on data from a cohort of 4680 registrants (the number of registrants as of October 9, 2015 who met diagnostic criteria for one of the 3 NF conditions. The analyses support our hypothesis that patient-reported symptom incidences in the NF Registry are congruent with published clinician-sourced data. Between April 26, 2013 and July 8, 2016, the registry has been useful to investigators in recruitment, particularly for observational trials, especially those for development of patient-reported outcomes.

Self-esteem, social participation, and quality of life in patients with multiple sclerosis.

Science.gov (United States)

Mikula, Pavol; Nagyova, Iveta; Krokavcova, Martina; Vitkova, Marianna; Rosenberger, Jaroslav; Szilasiova, Jarmila; Gdovinova, Zuzana; Stewart, Roy E; Groothoff, Johan W; van Dijk, Jitse P

2017-07-01

The aim of this study is to explore whether self-esteem and social participation are associated with the physical and mental quality of life (Physical Component Summary, Mental Component Summary) and whether self-esteem can mediate the association between these variables. We collected information from 118 consecutive multiple sclerosis patients. Age, gender, disease duration, disability status, and participation were significant predictors of Physical Component Summary, explaining 55.4 percent of the total variance. Self-esteem fully mediated the association between social participation and Mental Component Summary (estimate/standard error = -4.872; p educational programs.

A digitally facilitated citizen-science driven approach accelerates participant recruitment and increases study population diversity.

Science.gov (United States)

Puhan, Milo A; Steinemann, Nina; Kamm, Christian P; Müller, Stephanie; Kuhle, Jens; Kurmann, Roland; Calabrese, Pasquale; Kesselring, Jürg; von Wyl, Viktor; Swiss Multiple Sclerosis Registry Smsr

2018-05-16

Our aim was to assess whether a novel approach of digitally facilitated, citizen-science research, as followed by the Swiss Multiple Sclerosis Registry (Swiss MS Registry), leads to accelerated participant recruitment and more diverse study populations compared with traditional research studies where participants are mostly recruited in study centres without the use of digital technology. The Swiss MS Registry is a prospective, longitudinal, observational study covering all Switzerland. Participants actively contribute to the Swiss MS Registry, from defining research questions to providing data (online or on a paper form) and co-authoring papers. We compared the recruitment dynamics over the first 18 months with the a priori defined recruitment goals and assessed whether a priori defined groups were enrolled who are likely to be missed by traditional research studies. The goal to recruit 400 participants in the first year was reached after only 20 days, and by the end of 18 months 1700 participants had enrolled in the Swiss MS Registry, vastly exceeding expectations. Of the a priori defined groups with potential underrepresentation in other studies, 645 participants (46.5%) received care at a private neurology practice, 167 participants (12%) did not report any use of healthcare services in the past 12 months, 32 (2.3%) participants lived in rural mountainous areas, and 20 (2.0% of the 1041 for whom this information was available) lived in a long-term care facility. Having both online and paper options increased diversity of the study population in terms of geographic origin and type and severity of disease, as well as use of health care services. In particular, paper enrolees tended to be older, more frequently affected by progressive MS types and more likely to have accessed healthcare services in the past 12 months. Academic and industry-driven medical research faces substantial challenges in terms of patient involvement, recruitment, relevance and

United States Transuranium and Uranium Registries. Annuary report, February 1, 2004 - June 30, 2005

Energy Technology Data Exchange (ETDEWEB)

Alldredge, J. Richard [Washington State Univ., Richland, WA (United States); Ehrhart, Susan M. [Washington State Univ., Richland, WA (United States); Eliston, James T. [Washington State Univ., Richland, WA (United States); Emmel, Robert R. [Washington State Univ., Richland, WA (United States); Filipy, Ronald E. [Washington State Univ., Richland, WA (United States); James, Anthony C. [Washington State Univ., Richland, WA (United States); Sasser, Lyle B. [Washington State Univ., Richland, WA (United States); Wood, Tanya G. [Washington State Univ., Richland, WA (United States)

2006-05-31

Three events of significance to the U. S. Transuranium and Uranium Registries (USTUR) occurred during this reporting period: 1. The search for a new Associate Director was successful in that Dr. Anthony C. (Tony) James was appointed to the position, 2. A five-year grant for the operation of the USTUR was approved by the U. S. Department of Energy; the previous grant cycles were for three years, 3. I retired from the USTUR Directorship on July 1, 2005 and Tony James became the new Director.

Pediatric Contact Dermatitis Registry Inaugural Case Data.

Science.gov (United States)

Goldenberg, Alina; Mousdicas, Nico; Silverberg, Nanette; Powell, Douglas; Pelletier, Janice L; Silverberg, Jonathan I; Zippin, Jonathan; Fonacier, Luz; Tosti, Antonella; Lawley, Leslie; Wu Chang, Mary; Scheman, Andrew; Kleiner, Gary; Williams, Judith; Watsky, Kalman; Dunnick, Cory A; Frederickson, Rachel; Matiz, Catalina; Chaney, Keri; Estes, Tracy S; Botto, Nina; Draper, Michelle; Kircik, Leon; Lugo-Somolinos, Aida; Machler, Brian; Jacob, Sharon E

2016-01-01

Little is known about the epidemiology of allergic contact dermatitis (ACD) in US children. More widespread diagnostic confirmation through epicutaneous patch testing is needed. The aim was to quantify patch test results from providers evaluating US children. The study is a retrospective analysis of deidentified patch test results of children aged 18 years or younger, entered by participating providers in the Pediatric Contact Dermatitis Registry, during the first year of data collection (2015-2016). One thousand one hundred forty-two cases from 34 US states, entered by 84 providers, were analyzed. Sixty-five percent of cases had one or more positive patch test (PPT), with 48% of cases having 1 or more relevant positive patch test (RPPT). The most common PPT allergens were nickel (22%), fragrance mix I (11%), cobalt (9.1%), balsam of Peru (8.4%), neomycin (7.2%), propylene glycol (6.8%), cocamidopropyl betaine (6.4%), bacitracin (6.2%), formaldehyde (5.7%), and gold (5.7%). This US database provides multidisciplinary information on pediatric ACD, rates of PPT, and relevant RPPT reactions, validating the high rates of pediatric ACD previously reported in the literature. The registry database is the largest comprehensive collection of US-only pediatric patch test cases on which future research can be built. Continued collaboration between patients, health care providers, manufacturers, and policy makers is needed to decrease the most common allergens in pediatric consumer products.

Association between self-reported and objectively measured physical fitness level in a middle-aged population in primary care

DEFF Research Database (Denmark)

Obling, Kirstine H.; Hansen, Anne-Louise Smidt; Overgaard, Kristian

2015-01-01

fitness level were cross-tabulated and agreement was quantified by Kappa statistics. Gender differences within categories were investigated by Poisson regression. RESULTS: Data from 996 men and 1017 women were analyzed (excluded, n = 303). In both men and women a higher self-reported fitness level......AIM: To investigate the association between self-reported physical fitness level obtained by a single-item question and objectively measured fitness level in 30- to 49-year-old men and women. METHODS: From the Danish 'Check Your Health Preventive Program' 2013-2014 fitness level was assessed...... in 2316 participants using the Aastrand test. Additionally, participants rated their physical fitness as high, good, average, fair or low. The association of self-reported- with objectively measured fitness level was analyzed by linear regression. Categories of self-reported- and objectively measured...

Using Self-reports or Claims to Assess Disease Prevalence: It's Complicated.

Science.gov (United States)

St Clair, Patricia; Gaudette, Étienne; Zhao, Henu; Tysinger, Bryan; Seyedin, Roxanna; Goldman, Dana P

2017-08-01

Two common ways of measuring disease prevalence include: (1) using self-reported disease diagnosis from survey responses; and (2) using disease-specific diagnosis codes found in administrative data. Because they do not suffer from self-report biases, claims are often assumed to be more objective. However, it is not clear that claims always produce better prevalence estimates. Conduct an assessment of discrepancies between self-report and claims-based measures for 2 diseases in the US elderly to investigate definition, selection, and measurement error issues which may help explain divergence between claims and self-report estimates of prevalence. Self-reported data from 3 sources are included: the Health and Retirement Study, the Medicare Current Beneficiary Survey, and the National Health and Nutrition Examination Survey. Claims-based disease measurements are provided from Medicare claims linked to Health and Retirement Study and Medicare Current Beneficiary Survey participants, comprehensive claims data from a 20% random sample of Medicare enrollees, and private health insurance claims from Humana Inc. Prevalence of diagnosed disease in the US elderly are computed and compared across sources. Two medical conditions are considered: diabetes and heart attack. Comparisons of diagnosed diabetes and heart attack prevalence show similar trends by source, but claims differ from self-reports with regard to levels. Selection into insurance plans, disease definitions, and the reference period used by algorithms are identified as sources contributing to differences. Claims and self-reports both have strengths and weaknesses, which researchers need to consider when interpreting estimates of prevalence from these 2 sources.

Implementation of a prospective pregnancy registry for antiretroviral based HIV prevention trials.

Science.gov (United States)

Mhlanga, Felix G; Noguchi, Lisa; Balkus, Jennifer E; Kabwigu, Samuel; Scheckter, Rachel; Piper, Jeanna; Watts, Heather; O'Rourke, Colin; Torjesen, Kristine; Brown, Elizabeth R; Hillier, Sharon L; Beigi, Richard

2018-02-01

Safety data on pregnancy and fetal outcomes among women in HIV prevention trials are urgently needed to inform use of effective antiretroviral agents for HIV prevention. We describe an effective, efficient, and novel method to prospectively collect perinatal safety data concurrent with on-going parent clinical trials. The Microbicide Trials Network (MTN)-016 study is a multinational prospective pregnancy exposure registry designed to capture pregnancy and neonatal outcomes. Studies currently contributing data to this registry included phase I and II safety trials with planned exposures to candidate HIV prevention agents, as well as phase IIB and III efficacy trials capturing data on pregnancy and infant outcomes following inadvertent fetal exposure during study participation. To date, participants from two phase I studies and two effectiveness trials have participated in MTN-016, resulting in 420 pregnant women and 381 infants enrolled. Infant retention has been high, with 329 of 381 (86%) infants completing the 12-month follow-up visit. In a research setting context, it is feasible to establish and implement a prospective, multinational HIV chemoprophylaxis pregnancy registry that will generate pregnancy exposure data in a robust fashion.

Interest of a simple on-line screening registry for measuring ICU burden related to an influenza pandemic.

Science.gov (United States)

Richard, Jean-Christophe Marie; Pham, Tài; Brun-Buisson, Christian; Reignier, Jean; Mercat, Alain; Beduneau, Gaëtan; Régnier, Bernard; Mourvillier, Bruno; Guitton, Christophe; Castanier, Matthias; Combes, Alain; Le Tulzo, Yves; Brochard, Laurent

2012-07-09

The specific burden imposed on Intensive Care Units (ICUs) during the A/H1N1 influenza 2009 pandemic has been poorly explored. An on-line screening registry allowed a daily report of ICU beds occupancy rate by flu infected patients (Flu-OR) admitted in French ICUs. We conducted a prospective inception cohort study with results of an on-line screening registry designed for daily assessment of ICU burden. Among the 108 centers participating to the French H1N1 research network on mechanical ventilation (REVA) - French Society of Intensive Care (SRLF) registry, 69 ICUs belonging to seven large geographical areas voluntarily participated in a website screening-registry. The aim was to daily assess the ICU beds occupancy rate by influenza-infected and non-infected patients for at least three weeks. Three hundred ninety-one critically ill infected patients were enrolled in the cohort, representing a subset of 35% of the whole French 2009 pandemic cohort; 73% were mechanically ventilated, 13% required extra corporal membrane oxygenation (ECMO) and 22% died. The global Flu-OR in these ICUs was only 7.6%, but it exceeded a predefined 15% critical threshold in 32 ICUs for a total of 103 weeks. Flu-ORs were significantly higher in University than in non-University hospitals. The peak ICU burden was poorly predicted by observations obtained at the level of large geographical areas. The peak Flu-OR during the pandemic significantly exceeded a 15% critical threshold in almost half of the ICUs, with an uneven distribution with time, geographical areas and between University and non-University hospitals. An on-line assessment of Flu-OR via a simple dedicated registry may contribute to better match resources and needs.

Age differences in cognitive performance in later life: relationships to self-reported health and activity life style.

Science.gov (United States)

Hultsch, D F; Hammer, M; Small, B J

1993-01-01

The predictive relationships among individual differences in self-reported physical health and activity life style and performance on an array of information processing and intellectual ability measures were examined. A sample of 484 men and women aged 55 to 86 years completed a battery of cognitive tasks measuring verbal processing time, working memory, vocabulary, verbal fluency, world knowledge, word recall, and text recall. Hierarchical regression was used to predict performance on these tasks from measures of self-reported physical health, alcohol and tobacco use, and level of participation in everyday activities. The results indicated: (a) individual differences in self-reported health and activity predicted performance on multiple cognitive measures; (b) self-reported health was more predictive of processing resource variables than knowledge-based abilities; (c) interaction effects indicated that participation in cognitively demanding activities was more highly related to performance on some measures for older adults than for middle-aged adults; and (d) age-related differences in performance on multiple measures were attenuated by partialing individual differences in self-reported health and activity.

Increased perceived self-efficacy facilitates the extinction of fear in healthy participants

Directory of Open Access Journals (Sweden)

Armin eZlomuzica

2015-10-01

Full Text Available Self-efficacy has been proposed as an important element of a successful cognitive behavioral treatment. Positive changes in perceived self-efficacy have been linked to an improved adaptive emotional and behavioral responding in the context of anxiety-provoking situations. Furthermore, a positive influence of self-efficacy on cognitive functions has been confirmed. The present study examined the effect of verbal persuasion on perceived self-efficacy and fear extinction. Healthy participants were subjected to a standardized differential fear conditioning paradigm. After fear acquisition, half of the participants received a verbal persuasion aimed at increasing perceived self-efficacy. The extinction of fear was assessed immediately thereafter on both the implicit and explicit level. Our results suggest that an increased perceived self-efficacy was associated with enhanced extinction, evidenced on the psychophysiological level and accompanied by more pronounced decrements in conditioned negative valence. Changes in extinction were not due to a decrease in overall emotional reactivity to conditioned stimuli. In addition, debriefing participants about the false positive feedback did not affect the processing of already extinguished conditioned responses during a subsequent continued extinction phase. Our results suggest that positive changes in perceived self-efficacy can be beneficial for emotional learning. Findings are discussed with respect to strategies aimed at increasing extinction learning in the course of exposure-based treatments.

Accuracy of Professional Self-Reports: Medical Student Self-Report and the Scoring of Professional Competence

Science.gov (United States)

Richter Lagha, Regina Anne

2014-01-01

Self-report is currently used as an indicator of professional practice in a variety of fields, including medicine and education. Important to consider, therefore, is the ability of self-report to accurately capture professional practice. This study investigated how well professionals' self-reports of behavior agreed with an expert observer's…

Self-reported accidents

DEFF Research Database (Denmark)

Møller, Katrine Meltofte; Andersen, Camilla Sloth

2016-01-01

The main idea behind the self-reporting of accidents is to ask people about their traffic accidents and gain knowledge on these accidents without relying on the official records kept by police and/or hospitals.......The main idea behind the self-reporting of accidents is to ask people about their traffic accidents and gain knowledge on these accidents without relying on the official records kept by police and/or hospitals....

My Retina Tracker™: An On-line International Registry for People Affected with Inherited Orphan Retinal Degenerative Diseases and their Genetic Relatives - A New Resource.

Science.gov (United States)

Fisher, Joan K; Bromley, Russell L; Mansfield, Brian C

2016-01-01

My Retina Tracker™ is a new on-line registry for people affected with inherited orphan retinal degenerative diseases, and their unaffected, genetic relatives. Created and supported by the Foundation Fighting Blindness, it is an international resource designed to capture the disease from the perspective of the registry participant and their retinal health care providers. The registry operates under an Institutional Review Board (IRB)-approved protocol and allows sharing of de-identified data with participants, researchers and clinicians. All participants sign an informed consent that includes selecting which data they wish to share. There is no minimum age of participation. Guardians must sign on behalf of minors, and children between the ages of 12 to 17 also sign an informed assent. Participants may compare their disease to others in the registry using graphical interpretations of the aggregate registry data. Researchers and clinicians have two levels of access. The first provides an interface to interrogate all data fields registrants have agreed to share based on their answers in the IRB informed consent. The second provides a route to contact people in the registry who may be eligible for studies or trials, through the Foundation.

Registry Assessment of Peripheral Interventional Devices (RAPID): Registry assessment of peripheral interventional devices core data elements.

Science.gov (United States)

Jones, W Schuyler; Krucoff, Mitchell W; Morales, Pablo; Wilgus, Rebecca W; Heath, Anne H; Williams, Mary F; Tcheng, James E; Marinac-Dabic, J Danica; Malone, Misti L; Reed, Terrie L; Fukaya, Rie; Lookstein, Robert A; Handa, Nobuhiro; Aronow, Herbert D; Bertges, Daniel J; Jaff, Michael R; Tsai, Thomas T; Smale, Joshua A; Zaugg, Margo J; Thatcher, Robert J; Cronenwett, Jack L

2018-02-01

The current state of evaluating patients with peripheral artery disease and more specifically of evaluating medical devices used for peripheral vascular intervention (PVI) remains challenging because of the heterogeneity of the disease process, the multiple physician specialties that perform PVI, the multitude of devices available to treat peripheral artery disease, and the lack of consensus about the best treatment approaches. Because PVI core data elements are not standardized across clinical care, clinical trials, and registries, aggregation of data across different data sources and physician specialties is currently not feasible. Under the auspices of the U.S. Food and Drug Administration's Medical Device Epidemiology Network initiative-and its PASSION (Predictable and Sustainable Implementation of the National Registries) program, in conjunction with other efforts to align clinical data standards-the Registry Assessment of Peripheral Interventional Devices (RAPID) workgroup was convened. RAPID is a collaborative, multidisciplinary effort to develop a consensus lexicon and to promote interoperability across clinical care, clinical trials, and national and international registries of PVI. The current manuscript presents the initial work from RAPID to standardize clinical data elements and definitions, to establish a framework within electronic health records and health information technology procedural reporting systems, and to implement an informatics-based approach to promote the conduct of pragmatic clinical trials and registry efforts in PVI. Ultimately, we hope this work will facilitate and improve device evaluation and surveillance for patients, clinicians, health outcomes researchers, industry, policymakers, and regulators. Copyright © 2017 Society for Vascular Surgery. All rights reserved.

Registry Assessment of Peripheral Interventional Devices (RAPID)　- Registry Assessment of Peripheral Interventional Devices Core Data Elements.

Science.gov (United States)

Jones, W Schuyler; Krucoff, Mitchell W; Morales, Pablo; Wilgus, Rebecca W; Heath, Anne H; Williams, Mary F; Tcheng, James E; Marinac-Dabic, J Danica; Malone, Misti L; Reed, Terrie L; Fukaya, Rie; Lookstein, Robert; Handa, Nobuhiro; Aronow, Herbert D; Bertges, Daniel J; Jaff, Michael R; Tsai, Thomas T; Smale, Joshua A; Zaugg, Margo J; Thatcher, Robert J; Cronenwett, Jack L; Nc, Durham; Md, Silver Spring; Japan, Tokyo; Ny, New York; Ri, Providence; Vt, Burlington; Mass, Newton; Colo, Denver; Ariz, Tempe; Calif, Santa Clara; Minn, Minneapolis; Nh, Lebanon

2018-01-25

The current state of evaluating patients with peripheral artery disease and more specifically of evaluating medical devices used for peripheral vascular intervention (PVI) remains challenging because of the heterogeneity of the disease process, the multiple physician specialties that perform PVI, the multitude of devices available to treat peripheral artery disease, and the lack of consensus about the best treatment approaches. Because PVI core data elements are not standardized across clinical care, clinical trials, and registries, aggregation of data across different data sources and physician specialties is currently not feasible.Methods and Results:Under the auspices of the U.S. Food and Drug Administration's Medical Device Epidemiology Network initiative-and its PASSION (Predictable and Sustainable Implementation of the National Registries) program, in conjunction with other efforts to align clinical data standards-the Registry Assessment of Peripheral Interventional Devices (RAPID) workgroup was convened. RAPID is a collaborative, multidisciplinary effort to develop a consensus lexicon and to promote interoperability across clinical care, clinical trials, and national and international registries of PVI. The current manuscript presents the initial work from RAPID to standardize clinical data elements and definitions, to establish a framework within electronic health records and health information technology procedural reporting systems, and to implement an informatics-based approach to promote the conduct of pragmatic clinical trials and registry efforts in PVI. Ultimately, we hope this work will facilitate and improve device evaluation and surveillance for patients, clinicians, health outcomes researchers, industry, policymakers, and regulators.

Common data items in seven European oesophagogastric cancer surgery registries: towards a European upper GI cancer audit (EURECCA Upper GI).

Science.gov (United States)

de Steur, W O; Henneman, D; Allum, W H; Dikken, J L; van Sandick, J W; Reynolds, J; Mariette, C; Jensen, L; Johansson, J; Kolodziejczyk, P; Hardwick, R H; van de Velde, C J H

2014-03-01

Seven countries (Denmark, France, Ireland, the Netherlands, Poland, Sweden, United Kingdom) collaborated to initiate a EURECCA (European Registration of Cancer Care) Upper GI project. The aim of this study was to identify a core dataset of shared items in the different data registries which can be used for future collaboration between countries. Item lists from all participating Upper GI cancer registries were collected. Items were scored 'present' when included in the registry, or when the items could be deducted from other items in the registry. The definition of a common item was that it was present in at least six of the seven participating countries. The number of registered items varied between 40 (Poland) and 650 (Ireland). Among the 46 shared items were data on patient characteristics, staging and diagnostics, neoadjuvant treatment, surgery, postoperative course, pathology, and adjuvant treatment. Information on non-surgical treatment was available in only 4 registries. A list of 46 shared items from seven participating Upper GI cancer registries was created, providing a basis for future quality assurance and research in Upper GI cancer treatment on a European level. Copyright © 2013 Elsevier Ltd. All rights reserved.

Examining relationship among self-esteem with obesity, physical fitness level and participation to sport

OpenAIRE

ERASLAN, Meric; ATAY, Emrah; YUKSEL, Yılmaz

2014-01-01

This study' purpose was to examine relationship among self-esteem with obesity, physical fitness level and participation situation to sport. 115 male and 124 female participated to study. Participants' mean age is 12.98±1.04 year, mean height 157.38±9.21 cm, mean BMI value 19.37±3.63 kg/m2. Only %28 of participants participates to sport. Besides, their %73.6 participates to sporting activities out of lesson. Coopersmith Self-Esteem Inventory was used as data collection material at s...

Correlates of Agreement between Accelerometry and Self-reported Physical Activity

DEFF Research Database (Denmark)

Cerin, Ester; Cain, Kelli L; Oyeyemi, Adewale L

2016-01-01

PURPOSE: Understanding factors that influence accurate assessment of physical activity (PA) and sedentary behavior (SB) is important to measurement development, epidemiologic studies, and interventions. This study examined agreement between self-reported (International Physical Activity Questionn......PURPOSE: Understanding factors that influence accurate assessment of physical activity (PA) and sedentary behavior (SB) is important to measurement development, epidemiologic studies, and interventions. This study examined agreement between self-reported (International Physical Activity...... Questionnaire - Long Form, IPAQ-LF) and accelerometry-based estimates of PA and SB across six countries, and identified correlates of between-method agreement. METHODS: Self-report and objective (accelerometry-based) PA and SB data were collected in 2002-2011 from 3,865 adult participants in eight cities from......-demographic characteristics and PA patterns were examined as correlates of between-method agreement. RESULTS: Observed relative agreement (relationships of IPAQ-LF with accelerometry-based PA and SB variables) was small to moderate (r=0.05-0.37) and was moderated by socio-demographic (age, sex, weight status, education...

Evaluation of self-reported ethnicity in a case-control population: the stroke prevention in young women study

Directory of Open Access Journals (Sweden)

Wozniak Marcella A

2009-12-01

Full Text Available Abstract Background Population-based association studies are used to identify common susceptibility variants for complex genetic traits. These studies are susceptible to confounding from unknown population substructure. Here we apply a model-based clustering approach to our case-control study of stroke among young women to examine if self-reported ethnicity can serve as a proxy for genetic ancestry. Findings A population-based case-control study of stroke among women aged 15-49 identified 361 cases of first ischemic stroke and 401 age-comparable control subjects. Thirty single nucleotide polymorphisms (SNPs throughout the genome unrelated to stroke risk and with established ancestry-based allele frequency differences were genotyped in all participants. The Structure program was used to iteratively evaluate for K = 1 to 5 potential genetic-based subpopulations. Evaluating the population as a whole, the Structure output plateaued at K = 2 clusters. 98% of self-reported Caucasians had an estimated probability ≥50% of belonging to Cluster 1, while 94% of self-reported African-Americans had an estimated probability ≥50% of belonging to Cluster 2. Stratifying the participants by self-reported ethnicity and repeating the analyses revealed the presence of two clusters among Caucasians, suggesting that potential substructure may exist. Conclusions Among our combined sample of African-American and Caucasian participants there is no large unknown subpopulation and self-reported ethnicity can serve as a proxy for genetic ancestry. Ethnicity-specific analyses indicate that population substructure may exist among the Caucasian participants indicating that further studies are warranted.

Do people's goals for mass participation sporting events matter? A self-determination theory perspective.

Science.gov (United States)

Coleman, S J; Sebire, S J

2017-12-01

Non-elite mass participation sports events (MPSEs) may hold potential as a physical activity promotion tool. Research into why people participate in these events and what goals they are pursuing is lacking. Grounded in self-determination theory, this study examined the associations between MPSE participants' goals, event experiences and physical activity. A prospective cohort study was conducted; pre-event, participants reported their goals for the event. Four weeks post-event, participants reported their motivation for exercise, perceptions of their event achievement and moderate-to-vigorous intensity physical activity (MVPA). Bivariate correlations and path analysis were performed on data from 114 adults. Intrinsic goals (e.g. health, skill and social affiliation) for the event were positively associated with perceptions of event achievement, whereas extrinsic goals (e.g. appearance or social recognition) were not. Event achievement was positively associated with post-event autonomous motivation, which in turn was positively associated with MVPA. Pursuing intrinsic but not extrinsic goals for MPSEs is associated with greater perceptions of event achievement, which in turn is associated with post-event autonomous motivation and MVPA. © The Author 2016. Published by Oxford University Press on behalf of Faculty of Public Health. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

Associations between Peer Victimization, Self-Reported Depression and Social Phobia among Adolescents: The Role of Comorbidity

Science.gov (United States)

Ranta, Klaus; Kaltiala-Heino, Riittakerttu; Pelkonen, Mirjami; Marttunen, Mauri

2009-01-01

Associations of peer victimization with adolescent depression and social phobia (SP), while controlling for comorbidity between them, have not been sufficiently explored in earlier research. A total of 3156 Finnish adolescents aged 15-16 years participated in a survey study. Self-reported peer victimization, as well as self-reported depression…

Hearing loss prevention education using adopt-a-band: changes in self-reported earplug use in two high school marching bands.

Science.gov (United States)

Auchter, Melissa; Le Prell, Colleen G

2014-06-01

Hearing loss prevention has always been an important issue for audiologists. The importance of hearing loss prevention education for young musicians is now recognized by the National Association for Music Education as well as the National Association of Schools of Music. Adopt-a-Band is a commercial program designed to foster hearing loss prevention behavior in young musicians. This study assessed changes in earplug use, measured using self-report surveys, after Adopt-a-Band training. Participants were members of 2 high school marching bands who viewed an informational DVD and reviewed fact sheets. Flat-attenuation earplugs were distributed, and training was provided. In addition, study participants engaged in discussion of hearing loss with a doctor of audiology student. Before training, 23% of participants reported they had previously used hearing protection. Immediately after training, 94% of participants reported they planned to use hearing protection at least occasionally. In a final end-of-season survey, earplug use had reliably increased; 62% of participants reported they used earplugs at least occasionally. Earplug use increased, but self-reported behavioral change was not as robust as predicted from self-reported participant intentions. Participant comments regarding factors that influenced their earplug use decisions suggest opportunities to improve training.

New Evaluation of the Electronically Activated Recorder (EAR: Obtrusiveness, Compliance, and Participant Self-selection Effects

Directory of Open Access Journals (Sweden)

Joseph H. Manson

2017-04-01

Full Text Available The Electronically Activated Recorder (EAR is a method for collecting periodic brief audio snippets of participants’ daily lives using a portable recording device. The EAR can potentially intrude into people’s privacy, alter their natural behavior, and introduce self-selection biases greater than in other types of social science methods. Previous research (Mehl and Holleran, 2007, hereafter M&H has shown that participant non-compliance with, and perceived obtrusiveness of, an EAR protocol are both low. However, these questions have not been addressed in jurisdictions that require the consent of all parties to recording conversations. This EAR study required participants to wear a button bearing a microphone icon and the words “This conversation may be recorded” to comply with California’s all-party consent law. Results revealed self-reported obtrusiveness and non-compliance were actually lower in the present study than in the M&H study. Behaviorally assessed non-compliance did not differ between the two studies. Participants in the present study talked more about being in the study than participants in the M&H study, but such talk still comprised <2% of sampled conversations. Another potential problem with the EAR, participant self-selection bias, was addressed by comparing the EAR volunteers’ HEXACO personality dimensions to a non-volunteer sample drawn from the same student population. EAR volunteers were significantly and moderately higher in Conscientiousness, and lower in Emotionality, than non-volunteers. In conclusion, the EAR method can be successfully implemented in at least one all-party consent state (California. Interested researchers are encouraged to review this procedure with their own legal counsel.

Uses and limitations of registry and academic databases.

Science.gov (United States)

Williams, William G

2010-01-01

A database is simply a structured collection of information. A clinical database may be a Registry (a limited amount of data for every patient undergoing heart surgery) or Academic (an organized and extensive dataset of an inception cohort of carefully selected subset of patients). A registry and an academic database have different purposes and cost. The data to be collected for a database is defined by its purpose and the output reports required for achieving that purpose. A Registry's purpose is to ensure quality care, an Academic Database, to discover new knowledge through research. A database is only as good as the data it contains. Database personnel must be exceptionally committed and supported by clinical faculty. A system to routinely validate and verify data integrity is essential to ensure database utility. Frequent use of the database improves its accuracy. For congenital heart surgeons, routine use of a Registry Database is an essential component of clinical practice. Copyright (c) 2010 Elsevier Inc. All rights reserved.

The Effect of Noise on Relationships Between Speech Intelligibility and Self-Reported Communication Measures in Tracheoesophageal Speakers.

Science.gov (United States)

Eadie, Tanya L; Otero, Devon Sawin; Bolt, Susan; Kapsner-Smith, Mara; Sullivan, Jessica R

2016-08-01

The purpose of this study was to examine how sentence intelligibility relates to self-reported communication in tracheoesophageal speakers when speech intelligibility is measured in quiet and noise. Twenty-four tracheoesophageal speakers who were at least 1 year postlaryngectomy provided audio recordings of 5 sentences from the Sentence Intelligibility Test. Speakers also completed self-reported measures of communication-the Voice Handicap Index-10 and the Communicative Participation Item Bank short form. Speech recordings were presented to 2 groups of inexperienced listeners who heard sentences in quiet or noise. Listeners transcribed the sentences to yield speech intelligibility scores. Very weak relationships were found between intelligibility in quiet and measures of voice handicap and communicative participation. Slightly stronger, but still weak and nonsignificant, relationships were observed between measures of intelligibility in noise and both self-reported measures. However, 12 speakers who were more than 65% intelligible in noise showed strong and statistically significant relationships with both self-reported measures (R2 = .76-.79). Speech intelligibility in quiet is a weak predictor of self-reported communication measures in tracheoesophageal speakers. Speech intelligibility in noise may be a better metric of self-reported communicative function for speakers who demonstrate higher speech intelligibility in noise.

The properties of self-report research measures: beyond psychometrics.

Science.gov (United States)

Blount, Claire; Evans, Chris; Birch, Sarah; Warren, Fiona; Norton, Kingsley

2002-06-01

Self-report measures pertinent for personality disorder are widely used and many are available. Their relative merits are usually assessed on nomothetic psychometrics and acceptability to users is neglected. We report reactions of lay, patient and professional groups to the Personality Diagnostic Questionnaire (PDQ-IV); Millon Clinical Multiaxial Inventory (MCMI-III); the Borderline Syndrome Index (BSI); Rosenberg's Self-Esteem Scale (RSE) and the Social Functioning Questionnaire (SFQ). These were sent to 148 professionals, ex-patients and lay people for comment. Thirty-six per cent were returned. Pattern-coding by three raters revealed problematic themes across all measures, including inappropriate length, vague items and language, cultural assumptions and slang, state-bias and response-set. Measures can be depressing and upsetting for some participants (both patients and non-patients), hence administration of measures should be sensitive. Treatment may make people more self-aware, which may compromise validity for outcome research. This evaluation raises issues and concerns, which are missed in traditional psychometric evaluation.

Carcinogenicity of Mustard Gas: Report of the Cancer Registry Project Among Mustard Gas Exposed Iranian Veterans

International Nuclear Information System (INIS)

Soroush, M. R.

2007-01-01

Since 2003 The Janbazan Medical and Engineering Research Center in collaboration with Tehran University has conducted a nationwide cancer registry project among all Iranian Veterans with history of exposure to mustard gas during 1980-1988 Iran Iraq war. The mixed cohort study has a retrospective phase from the exposure time to 2003 and a prospective phase from 2003 to 2013. The main goal is to find any possible relationship between exposure to mustard gas and developing cancer as a long term health effect. A total number of 7500 individual (both military and civilians) with confirmed medical records of exposure to mustard gas have been included in the study to be compared with the same number of control population as well as the statistics of the national cancer registry system. The follow up of all cases is being done as a part of the national health monitoring program of the Janbazan (veterans) organization. In this report the latest findings of this project will be presented.(author)

Childhood Cancer Incidence in India Betweem 2012 and 2014: Report of a Population-based Cancer Registry.

Science.gov (United States)

Das, Suman; Paul, Dilip Kumar; Anshu, Kumar; Bhakta, Subhajit

2017-12-15

To provide an overview of childhood cancer incidence in India between 2012-2014. Secondary data analysis on age-adjusted rates of cancer incidence for children (0-14 years) were collected from the report of the National Cancer Registry Programme in the year 2016. Age-adjusted rates of childhood cancer incidence ranged from 18.5 per million in the state of Nagaland to 235.3 per million in Delhi for boys. The rates were 11.4 per million in East Khasi Hill district and 152.3 per million in Delhi for girls. Leukemia was the most predominant cancer for both boys and girls. Lymphoma was the second most common cancer in boys, and brain tumors in girls. Childhood cancer incidence is increasing in India compared to population-based cancer registry survey of 2009-2011. Cancers are mostly affecting 0-4 years age group, and there is a rising trend of Non-Hodgkin's lymphoma.

Tumor registry data, Hiroshima and Nagasaki 1957-1959: malignant neoplasms

Energy Technology Data Exchange (ETDEWEB)

Harada, Tomin; Ide, Masao; Ishida, Morihiro; Troup, G M

1963-10-03

The report concerns three aspects of the Hiroshima and Nagasaki Tumor Registry data, 1957-1959: comparability, reliability and validity of incidence rates of malignant neoplasms obtained from the Tumor Registries and various statistical problems of registered data related to the Life Span Study sample and Adult Health Study sample; incidence rates of main site of malignant neoplasms obtained from the Tumor Registries are compared with those of the United States and Denmark; and incidence of malignant neoplasm among Hiroshima and Nagasaki A-bomb survivors. 15 references, 7 figures, 30 tables.

Summary of data held by the National Registry for Radiation Workers

CERN Document Server

Darby, S C

1982-01-01

This supplement to NRPB-R116 (Protocol for the National Registry for Radiation Workers) summarises the data held by the National Registry for Radiation Workers at the end of 1981. At this time the total population for which agreement had been reached with the participating organisations was about 54,000. The actual number registered, approximately 40,000, was about three quarters of this study population although for many individuals the data were still incomplete. The coverage of the study population is shown for each of the participating organisations. This summary is intended as a supplement to be used in conjunction with the main protocol for the study. It will be reissued from time to time as more data are received.

Acute injuries in soccer, ice hockey, volleyball, basketball, judo, and karate: analysis of national registry data.

OpenAIRE

Kujala, U. M.; Taimela, S.; Antti-Poika, I.; Orava, S.; Tuominen, R.; Myllynen, P.

1995-01-01

OBJECTIVE--To determine the acute injury profile in each of six sports and compare the injury rates between the sports. DESIGN--Analysis of national sports injury insurance registry data. SETTING--Finland during 1987-91. SUBJECTS--621,691 person years of exposure among participants in soccer, ice hockey, volleyball, basketball, judo, or karate. MAIN OUTCOME MEASURES--Acute sports injuries requiring medical treatment and reported to the insurance company on structured forms by the patients and...

Review of patient registries in dermatology.

Science.gov (United States)

DiMarco, Gabriella; Hill, Dane; Feldman, Steven R

2016-10-01

Patient registries are datasets containing information on patients with a particular disease or patients who are undergoing a specific treatment. Our objective was to search for and catalog the types of registries being used in dermatology and investigate their characteristics and uses. We searched Google, the Registry of Patient Registries, Orphanet, and ClinicalTrials.gov to compile a list of dermatology disease registries. We also conducted a literature review on the uses of dermatology registries using PubMed. We identified 48 dermatology patient registries, with 23 distinct diseases represented. We also identified 11 registries used for postmarketing surveillance of skin disease. Our search was limited to registries in English. Registries are commonly used for the study of rare dermatologic diseases and for postsurveillance monitoring of systemic therapies in more common dermatologic diseases, such as psoriasis. Copyright © 2016 American Academy of Dermatology, Inc. Published by Elsevier Inc. All rights reserved.

Rapid analysis of hyperbaric oxygen therapy registry data for reimbursement purposes: Technical communication.

Science.gov (United States)

Fife, Caroline E; Gelly, Helen; Walker, David; Eckert, Kristen Allison

2016-01-01

To explain how Hyperbaric Oxygen Therapy Registry (HBOTR) data of the US Wound Registry (USWR) helped establish a fair analysis of the physician work of hyperbaric chamber supervision for reimbursement purposes. We queried HBOTR data from January 1, 2013, to December 31, 2013, on patient comorbidities and medications as well as the number of hyperbaric oxygen (HBO₂) therapy treatments supervised per physician per day from all hyperbaric facilities participating in the USWR that had been using the electronic medical record (EHR) for more than six months and had passed data completeness checks. Among 11,240 patients at the 87 facilities included, the mean number of comorbidities and medications was 10 and 12, respectively. The mean number of HBO₂ treatments supervised per physician per day was 3.7 at monoplace facilities and 5.4 at multiplace facilities. Following analysis of these data by the RUC, the reimbursement rate of chamber supervision was decreased to $112.06. Patients undergoing HBO₂ therapy generally suffer from multiple, serious comorbidities and require multiple medications, which increase the risk of HBO₂ and necessitate the presence of a properly trained hyperbaric physician. The lack of engagement by hyperbaric physicians in registry reporting may result in lack of adequate data being available to counter future challenges to reimbursement.

Predictors of self-reported academic performance among undergraduate medical students of Hawassa University, Ethiopia.

Science.gov (United States)

Gedefaw, Abel; Tilahun, Birkneh; Asefa, Anteneh

2015-01-01

This study was conducted to identify predictors of self-reported academic performance in undergraduate medical students at Hawassa University. An analytical cross-sectional study involving 592 undergraduate medical students was conducted in November 2012. The academic performance of the study subjects was measured by self-reported cumulative grade point average (GPA) using a self-administered questionnaire. Data were entered and analyzed using Statistical Package for the Social Sciences version 16 software. Pearson's bivariate correlations, multiple linear regression, and multiple logistic regression were used to identify predictors of academic performance. The self-reported academic performance of students had been decreasing as the academic years progressed, with the highest and lowest performance being in the premedicine (mean GPA 3.47) and clinical I (mean GPA 2.71) years, respectively. One hundred and fifty-eight (26.7%) of the participants had ever been delayed, 37 (6.2%) had ever re-sat for examination, and two (0.3%) had ever been warned due to academic failure. The overall variation in self-reported academic performance of the students was 32.8%. Participant age alone explained 21.9% of the variation. On the other hand, university entrance examination results, substance use at university, and medicine as first choice by students were identified as predictors of variation in self-reported academic performance, accounting for 6.9%, 2.7%, and academic performance was explained by the studied variables. Hence, efficacious mechanisms should be designed to combat the intervenable determinants of self-reported academic performance, like substance use and a low medical school entrance examination result. Further studies should also be undertaken to gain a better understanding of other unstudied determinants, like personality, learning style, cognitive ability, and the system used for academic evaluation.

Civic Participation and Self-rated Health: A Cross-national Multi-level Analysis Using the World Value Survey

Directory of Open Access Journals (Sweden)

Saerom Kim

2015-01-01

Full Text Available Objectives: Civic participation, that which directly influences important decisions in our personal lives, is considered necessary for developing a society. We hypothesized that civic participation might be related to self-rated health status. Methods: We constructed a multi-level analysis using data from the World Value Survey (44 countries, n=50 859. Results: People who participated in voting and voluntary social activities tended to report better subjective health than those who did not vote or participate in social activities, after controlling for socio-demographic factors at the individual level. A negative association with unconventional political activity and subjective health was found, but this effect disappeared in a subset analysis of only the 18 Organization for Economic Cooperation and Development (OECD countries. Moreover, social participation and unconventional political participation had a statistically significant contextual association with subjective health status, but this relationship was not consistent throughout the analysis. In the analysis of the 44 countries, social participation was of borderline significance, while in the subset analysis of the OECD countries unconventional political participation was a stronger determinant of subjective health. The democratic index was a significant factor in determining self-rated health in both analyses, while public health expenditure was a significant factor in only the subset analysis. Conclusions: Despite the uncertainty of its mechanism, civic participation might be a significant determinant of the health status of a country.

Accuracy of self-reported smoking abstinence in clinical trials of hospital-initiated smoking interventions.

Science.gov (United States)

Scheuermann, Taneisha S; Richter, Kimber P; Rigotti, Nancy A; Cummins, Sharon E; Harrington, Kathleen F; Sherman, Scott E; Zhu, Shu-Hong; Tindle, Hilary A; Preacher, Kristopher J

2017-12-01

To estimate the prevalence and predictors of failed biochemical verification of self-reported abstinence among participants enrolled in trials of hospital-initiated smoking cessation interventions. Comparison of characteristics between participants who verified and those who failed to verify self-reported abstinence. Multi-site randomized clinical trials conducted between 2010 and 2014 in hospitals throughout the United States. Recently hospitalized smokers who reported tobacco abstinence 6 months post-randomization and provided a saliva sample for verification purposes (n = 822). Outcomes were salivary cotinine-verified smoking abstinence at 10 and 15 ng/ml cut-points. Predictors and correlates included participant demographics and tobacco use; hospital diagnoses and treatment; and study characteristics collected via surveys and electronic medical records. Usable samples were returned by 69.8% of the 1178 eligible trial participants who reported 7-day point prevalence abstinence. The proportion of participants verified as quit was 57.8% [95% confidence interval (CI) = 54.4, 61.2; 10 ng/ml cut-off] or 60.6% (95% CI = 57.2, 63.9; 15 ng/ml). Factors associated independently with verification at 10 ng/ml were education beyond high school education [odds ratio (OR) = 1.51; 95% CI = 1.07, 2.11], continuous abstinence since hospitalization (OR = 2.82; 95% CI = 2.02, 3.94), mailed versus in-person sample (OR = 3.20; 95% CI = 1.96, 5.21) and race. African American participants were less likely to verify abstinence than white participants (OR = 0.64; 95% CI = 0.44, 0.93). Findings were similar for verification at 15 ng/ml. Verification rates did not differ by treatment group. In the United States, high rates (40%) of recently hospitalized smokers enrolled in smoking cessation trials fail biochemical verification of their self-reported abstinence. © 2017 Society for the Study of Addiction.

Self-reported oral hygiene practices among adults in Denmark

DEFF Research Database (Denmark)

Christensen, Lisa Bøge; Petersen, Poul Erik; Krustrup, Ulla

2003-01-01

OBJECTIVES: To assess the present level of oral hygiene practices in the Danish adult population aged 16 or above, in particular to analyse how self-care practices in terms of oral hygiene habits and cleaning of dentures are affected by socio-economic factors, dental status, actual dental visiting...... habits, and the experience of oral health care during school years. BASIC RESEARCH DESIGN AND PARTICIPANTS: A cross-sectional study of 5802 persons, randomly sampled amongst the Danish population aged 16 years or above. Data were collected by means of personal interviews and self......-administered questionnaires. The response rate was 66%. RESULTS: Toothbrushing twice-a-day was reported by 68% of the dentates while 32% brushed their teeth once-a-day or less frequent. Daily use of toothpicks was reported by 28% while daily use of dental floss was reported by 11%. Oral hygiene habits were more frequent...

42 CFR 137.167 - What cost principles must a Self-Governance Tribe follow when participating in self-governance...

Science.gov (United States)

2010-10-01

... 42 Public Health 1 2010-10-01 2010-10-01 false What cost principles must a Self-Governance Tribe follow when participating in self-governance under Title V? 137.167 Section 137.167 Public Health PUBLIC... HUMAN SERVICES TRIBAL SELF-GOVERNANCE Operational Provisions Audits and Cost Principles § 137.167 What...

Assessing smoking status in disadvantaged populations: is computer administered self report an accurate and acceptable measure?

Directory of Open Access Journals (Sweden)

Bryant Jamie

2011-11-01

Full Text Available Abstract Background Self report of smoking status is potentially unreliable in certain situations and in high-risk populations. This study aimed to determine the accuracy and acceptability of computer administered self-report of smoking status among a low socioeconomic (SES population. Methods Clients attending a community service organisation for welfare support were invited to complete a cross-sectional touch screen computer health survey. Following survey completion, participants were invited to provide a breath sample to measure exposure to tobacco smoke in expired air. Sensitivity, specificity, positive predictive value and negative predictive value were calculated. Results Three hundred and eighty three participants completed the health survey, and 330 (86% provided a breath sample. Of participants included in the validation analysis, 59% reported being a daily or occasional smoker. Sensitivity was 94.4% and specificity 92.8%. The positive and negative predictive values were 94.9% and 92.0% respectively. The majority of participants reported that the touch screen survey was both enjoyable (79% and easy (88% to complete. Conclusions Computer administered self report is both acceptable and accurate as a method of assessing smoking status among low SES smokers in a community setting. Routine collection of health information using touch-screen computer has the potential to identify smokers and increase provision of support and referral in the community setting.

Self-Efficacy of Students with Visual Impairments before and after Participation in an Inquiry-Based Camp

Science.gov (United States)

Farrand, Kathleen; Wild, Tiffany A.; Hilson, Margilee P.

2016-01-01

The purpose of this pilot study was to determine students' self-efficacy level prior to participation and after participation in an inquiry-based science camp to determine if self-efficacy levels changed as a result of participation. A validated instrument, the 30 item Morgan-Jinks Student Self-Efficacy Scale (MJSES) (Jinks & Morgan, 1996) was…

The German registry for natural orifice translumenal endoscopic surgery: report of the first 551 patients.

Science.gov (United States)

Lehmann, Kai S; Ritz, Jörg P; Wibmer, Andreas; Gellert, Klaus; Zornig, Carsten; Burghardt, Jens; Büsing, Martin; Runkel, Norbert; Kohlhaw, Kay; Albrecht, Roland; Kirchner, Tom G; Arlt, Georg; Mall, Julian W; Butters, Michael; Bulian, Dirk R; Bretschneider, Jörgen; Holmer, Christoph; Buhr, Heinz J

2010-08-01

To analyze patient outcome in the first 14 months of the German natural orifice translumenal endoscopic surgery (NOTES) registry (GNR). NOTES is a new surgical concept, which permits scarless intra-abdominal operations through natural orifices, such as the mouth, vagina, rectum, or urethra. The GNR was established as a nationwide outcome database to allow the monitoring and safe introduction of this technique in Germany. The GNR was designed as a voluntary database with online access. All surgeons in Germany who performed NOTES procedures were requested to participate in the registry. The GNR recorded demographical and therapy data as well as data on the postoperative course. A total of 572 target organs were operated in 551 patients. Cholecystectomies accounted for 85.3% of all NOTES procedures. All procedures were performed in female patients using transvaginal hybrid technique. Complications occurred in 3.1% of all patients, conversions to laparoscopy or open surgery in 4.9%. In cholecystectomies, institutional case volume, obesity, and age had substantial effect on conversion rate, operation length, and length of hospital stay, but no effect on complications. Despite the fact that NOTES has just recently been introduced, the technique has already gained considerable clinical application. Transvaginal hybrid NOTES cholecystectomy is a practicable and safe alternative to laparoscopic resection even in obese or older patients.

The new Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry: design, rationale, and characteristics of patients enrolled in the first 12 months.

Science.gov (United States)

Beukelman, Timothy; Kimura, Yukiko; Ilowite, Norman T; Mieszkalski, Kelly; Natter, Marc D; Burrell, Grendel; Best, Brian; Jones, Jason; Schanberg, Laura E

2017-04-17

Herein we describe the history, design, and rationale of the new Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry and present the characteristics of patients with juvenile idiopathic arthritis (JIA) enrolled in the first 12 months of operation. The CARRA Registry began prospectively collecting data in the United States and Canada in July 2015 to evaluate the safety of therapeutic agents in persons with childhood-onset rheumatic disease, initially restricted to JIA. Secondary objectives include the evaluation of disease outcomes and their associations with medication use and other factors. Data are collected every 6 months and include clinical assessments, detailed medication use, patient-reported outcomes, and safety events. Follow-up is planned for at least 10 years for each participant and is facilitated by a telephone call center. As of July 2016, 1192 patients with JIA were enrolled in the CARRA Registry at 49 clinical sites. At enrollment, their median age was 12.4 years old and median disease duration was 2.6 years. Owing to preferential enrollment, patients with systemic JIA (13%) and with a polyarticular course (75%) were over-represented compared to patients in typical clinical practice. Approximately 49% were currently using biologic agents and ever use of oral glucocorticoids was common (47%). The CARRA Registry provides safety surveillance data to pharmaceutical companies to satisfy their regulatory requirements, and several independently-funded sub-studies that use the Registry infrastructure are underway. The new CARRA Registry successfully enrolled nearly 1200 participants with JIA in the first 12 months of its operation. Sustainable funding has been secured from multiple sources. The CARRA Registry may serve as a model for the study of other uncommon diseases.

Effect of hippotherapy on perceived self-competence and participation in a child with cerebral palsy.

Science.gov (United States)

Frank, Alana; McCloskey, Sandra; Dole, Robin L

2011-01-01

This case report highlights changes in self-competence and social acceptance, along with changes in functional skills, after an 8-week program of hippotherapy. A 6-year-old girl with mild ataxic cerebral palsy, level I Gross Motor Functional Classification System, exhibited typical impairments in body systems and functions that affected her participation in age-appropriate functional and leisure activities. The child's performance on the Gross Motor Function Measure-66, the Pediatric Outcomes Data Collection Instrument, and the Pictorial Scale of Perceived Competence and Social Acceptance for Young Children were examined at baseline, after the 8-week intervention, and at a 2-month follow-up session. Data at 8 weeks demonstrated positive changes in all areas, with improvements continuing for 2 months after the program's completion. Hippotherapy not only may be an effective intervention to improve functional gross motor development but also may affect perceived self-competence and social acceptance, which may lead to increases in participation for children with mild cerebral palsy.

Design, and participant enrollment, of a randomized controlled trial evaluating effectiveness and cost-effectiveness of a community-based case management intervention, for patients suffering from COPD

DEFF Research Database (Denmark)

Sørensen, Sabrina Storgaard; Pedersen, Kjeld Møller; Weinreich, Ulla Møller

2015-01-01

Background: Case management interventions are recommended to improve quality of care and reduce costs in chronic care, but further evidence on effectiveness and cost-effectiveness is needed. The objective of this study is the reporting of the design and participant enrollment of a randomized...... controlled trial, conducted to evaluate the effectiveness and cost-effectiveness of a community-based case management model for patients suffering from chronic obstructive pulmonary disease (COPD). With a focus on support for self-care and care coordination, the intervention was hypothesized to result...... patients were randomized into two groups: the case-managed group and the usual-care group. Participant characteristics were obtained at baseline, and measures on effectiveness and costs were obtained through questionnaires and registries within a 12-month follow-up period. In the forthcoming analysis...

Discordance of HIV and HSV-2 biomarkers and self-reported sexual behaviour among orphan adolescents in Western Kenya.

Science.gov (United States)

Cho, Hyunsan; Luseno, Winnie; Halpern, Carolyn; Zhang, Lei; Mbai, Isabella; Milimo, Benson; Hallfors, Denise Dion

2015-06-01

This paper examines the discordance between biological data of HIV and herpes simplex virus type 2 (HSV-2) infections and self-reported questionnaire responses among orphan adolescents in Western Kenya. In 2011, 837 orphan adolescents from 26 primary schools were enrolled in an HIV prevention trial. At baseline, blood samples were drawn for HIV and HSV-2 infection biomarker testing, and participants completed an audio computer-assisted self-interviewing survey. Comparing biological data with self-reported responses indicated that 70% of HIV-positive (7 out of 10) and 64% of HSV-2-positive (18 out of 28 positive) participants reported never having had sex. Among ever-married adolescents, 65% (57 out of 88) reported never having had sex. Overall, 10% of study participants appeared to have inconsistently reported their sexual behaviour. Logistic regression analyses indicated that lower educational level and exam scores were significant predictors of inconsistent reporting. Our study demonstrates the discordance between infections measured by biomarkers and self-reports of having had sex among orphan adolescents in Kenya. In order to detect programme effects accurately in prevention research, it is necessary to collect both baseline and endline biological data. Furthermore, it is recommended to triangulate multiple data sources about adolescent participants' self-reported information about marriage and pregnancies from school records and parent/guardians to verify the information. Researchers should recognise potential threats to validity in data and design surveys to consider cognitive factors and/or cultural context to obtain more accurate and reliable information from adolescents regarding HIV/sexually transmitted infection risk behaviours. NCT01501864. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Self-reported versus behavioral self-handicapping: empirical evidence for a theoretical distinction.

Science.gov (United States)

Hirt, E R; Deppe, R K; Gordon, L J

1991-12-01

The present study was an investigation of how Ss would respond when given 2 self-handicapping options, 1 behavioral (withdrawal of practice effort) and 1 self-reported (reporting high levels of stress). Ss anticipating a diagnostic test of intellectual ability were given different instructions regarding the effects of stress and practice on test performance. Ss were told that (a) stress only, (b) practice only, (c) both stress and practice, or (d) neither stress nor practice affected test scores. Ss were then given the opportunity to self-report a handicap on a stress inventory and to behaviorally self-handicap by failing to practice before the test. High self-handicapping men and women showed evidence of self-reported handicapping, but only high self-handicapping men behaviorally self-handicapped. However, when both self-handicaps were viable, both high self-handicapping men and women preferred the self-reported over the behavioral self-handicap.

The Swedish MS registry – clinical support tool and scientific resource.

Science.gov (United States)

Hillert, J; Stawiarz, L

2015-01-01

The Swedish MS registry (SMSreg) is designed to assure quality health care for patients with multiple sclerosis (MS). It has been active since 2001 and web-based since 2004. It runs on government funding only and is used in all Swedish neurology departments. The SMSreg currently includes data on 14,500 of Sweden's estimated 17,500 prevalent patients with MS. One important function of SMSreg, to which participation is voluntary, is to serve as a tool for decision support and to provide an easy overview of the patient information needed at clinical visits. This is its core feature and explains why the majority of Swedish MS specialists contribute data. Another success factor for SMSreg is that entered data can be readily accessed, either through a query function into Excel format or through a set of predesigned tables and diagrams in which parameters can be selected. Recent development includes a portal allowing patients to view a summary of their registered data and to report a set of patient-reported outcomes. SMSreg data have been used in close to 100 published scientific reports. Current projects include an incidence cohort (EIMS), post-marketing cohorts of patients on novel disease-modifying drugs (IMSE), and a prevalence cohort (GEMS). As these studies combine physical sampling and questionnaire data with clinical documentation and possible linkage to other public registries, together they provide an excellent platform for integrated MS research. © 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

Visual acuity, self-reported vision and falls in the EPIC-Norfolk Eye study

OpenAIRE

Yip, Jennifer L Y; Khawaja, Anthony P; Broadway, David; Luben, Robert; Hayat, Shabina; Dalzell, Nichola; Bhaniani, Amit; Wareham, Nicholas; Khaw, Kay-Tee; Foster, Paul J

2013-01-01

Purpose To examine the relationship between visual acuity (VA) and self-reported vision (SRV) in relation to falls in 8317 participants of the European Prospective Investigation into Cancer-Norfolk Eye study. Methods All participants completed a health questionnaire that included a question regarding SRV and questions regarding the number of falls in the past year. Distance VA was measured using a logMAR chart for each eye. Poor SRV was defined as those reporting fair or poor distance vision....

Images of the Self and Self-Esteem: Do Positive Self-Images Improve Self-Esteem in Social Anxiety?

Science.gov (United States)

Hulme, Natalie; Hirsch, Colette; Stopa, Lusia

2012-01-01

Negative self-images play an important role in maintaining social anxiety disorder. We propose that these images represent the working self in a Self-Memory System that regulates retrieval of self-relevant information in particular situations. Self-esteem, one aspect of the working self, comprises explicit (conscious) and implicit (automatic) components. Implicit self-esteem reflects an automatic evaluative bias towards the self that is normally positive, but is reduced in socially anxious individuals. Forty-four high and 44 low socially anxious participants generated either a positive or a negative self-image and then completed measures of implicit and explicit self-esteem. Participants who held a negative self-image in mind reported lower implicit and explicit positive self-esteem, and higher explicit negative self-esteem than participants holding a positive image in mind, irrespective of social anxiety group. We then tested whether positive self-images protected high and low socially anxious individuals equally well against the threat to explicit self-esteem posed by social exclusion in a virtual ball toss game (Cyberball). We failed to find a predicted interaction between social anxiety and image condition. Instead, all participants holding positive self-images reported higher levels of explicit self-esteem after Cyberball than those holding negative self-images. Deliberate retrieval of positive self-images appears to facilitate access to a healthy positive implicit bias, as well as improving explicit self-esteem, whereas deliberate retrieval of negative self-images does the opposite. This is consistent with the idea that negative self-images may have a causal, as well as a maintaining, role in social anxiety disorder. PMID:22439697

Examining the Effects of Self-Reported Posttraumatic Stress Disorder Symptoms and Positive Relations with Others on Self-Regulated Learning for Student Service Members/Veterans

Science.gov (United States)

Ness, Bryan M.; Middleton, Michael J.; Hildebrandt, Michael J.

2015-01-01

Objectives: To examine the relationships between self-reported posttraumatic stress disorder (PTSD) symptoms, perceived positive relations with others, self-regulation strategy use, and academic motivation among student service members/veterans (SSM/V) enrolled in postsecondary education. Participants: SSM/V (N = 214), defined as veterans, active…

Verification of adolescent self-reported smoking.

Science.gov (United States)

Kentala, Jukka; Utriainen, Pekka; Pahkala, Kimmo; Mattila, Kari

2004-02-01

Smoking and the validity of information obtained on it is often questioned in view of the widespread belief that adolescents tend to under- or over-report the habit. The aim here was to verify smoking habits as reported in a questionnaire given in conjunction with dental examinations by asking participants directly whether they smoked or not and performing biochemical measurements of thiocyanate in the saliva and carbon monoxide in the expired air. The series consisted of 150 pupils in the ninth grade (age 15 years). The reports in the questionnaires seemed to provide a reliable estimate of adolescent smoking, the sensitivity of the method being 81-96%, specificity 77-95%. Biochemical verification or control of smoking proved needless in normal dental practice. Accepting information offered by the patient provides a good starting point for health education and work motivating and supporting of self-directed breaking of the habit.

Statin Use and Self-Reported Hindering Muscle Complaints in Older Persons: A Population Based Study.

Directory of Open Access Journals (Sweden)

Milly A van der Ploeg

Full Text Available Statins are widely used by older persons in primary and secondary prevention of cardiovascular disease. Although serious adverse events are rare, many statin users report mild muscle pain and/or muscle weakness. It's unclear what impact statins exert on a patient's daily life. Research on statin related side effects in older persons is relatively scarce. We therefore investigated the relation between statin use and self-reported hindering muscle complaints in older persons in the general population.The present research was performed within the Integrated Systematic Care for Older Persons (ISCOPE study in the Netherlands (Netherlands trial register, NTR1946. All registered adults aged ≥ 75 years from 59 participating practices (n = 12,066 were targeted. Information about the medical history and statin use at baseline and after 9 months was available for 4355 participants from the Electronic Patient Records of the general practitioners. In the screening questionnaire at baseline we asked participants: 'At the moment, which health complaints limit you the most in your day-to-day life?' Answers indicating muscle or musculoskeletal complaints were coded as such. No specific questions about muscle complaints were asked.The participants had a median age of 80.3 (IQR 77.6-84.4 years, 60.8% were female and 28.5% had a history of CVD. At baseline 29% used a statin. At follow-up, no difference was found in the prevalence of self-reported hindering muscle complaints in statin users compared to non-statin users (3.3% vs. 2.5%, OR 1.39, 95% CI 0.94-2.05; P = 0.98. Discontinuation of statin use during follow-up was independent of self-reported hindering muscle complaints.Based on the present findings, prevalent statin use in this community-dwelling older population is not associated with self-reported hindering muscle complaints; however, the results might be different for incident users.

Statin Use and Self-Reported Hindering Muscle Complaints in Older Persons: A Population Based Study.

Science.gov (United States)

van der Ploeg, Milly A; Poortvliet, Rosalinde K E; van Blijswijk, Sophie C E; den Elzen, Wendy P J; van Peet, Petra G; de Ruijter, Wouter; Blom, Jeanet W; Gussekloo, Jacobijn

2016-01-01

Statins are widely used by older persons in primary and secondary prevention of cardiovascular disease. Although serious adverse events are rare, many statin users report mild muscle pain and/or muscle weakness. It's unclear what impact statins exert on a patient's daily life. Research on statin related side effects in older persons is relatively scarce. We therefore investigated the relation between statin use and self-reported hindering muscle complaints in older persons in the general population. The present research was performed within the Integrated Systematic Care for Older Persons (ISCOPE) study in the Netherlands (Netherlands trial register, NTR1946). All registered adults aged ≥ 75 years from 59 participating practices (n = 12,066) were targeted. Information about the medical history and statin use at baseline and after 9 months was available for 4355 participants from the Electronic Patient Records of the general practitioners. In the screening questionnaire at baseline we asked participants: 'At the moment, which health complaints limit you the most in your day-to-day life?' Answers indicating muscle or musculoskeletal complaints were coded as such. No specific questions about muscle complaints were asked. The participants had a median age of 80.3 (IQR 77.6-84.4) years, 60.8% were female and 28.5% had a history of CVD. At baseline 29% used a statin. At follow-up, no difference was found in the prevalence of self-reported hindering muscle complaints in statin users compared to non-statin users (3.3% vs. 2.5%, OR 1.39, 95% CI 0.94-2.05; P = 0.98). Discontinuation of statin use during follow-up was independent of self-reported hindering muscle complaints. Based on the present findings, prevalent statin use in this community-dwelling older population is not associated with self-reported hindering muscle complaints; however, the results might be different for incident users.

Missing data in trauma registries: A systematic review.

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Shivasabesan, Gowri; Mitra, Biswadev; O'Reilly, Gerard M

2018-03-30

Trauma registries play an integral role in trauma systems but their valid use hinges on data quality. The aim of this study was to determine, among contemporary publications using trauma registry data, the level of reporting of data completeness and the methods used to deal with missing data. A systematic review was conducted of all trauma registry-based manuscripts published from 01 January 2015 to current date (17 March 2017). Studies were identified by searching MEDLINE, EMBASE, and CINAHL using relevant subject headings and keywords. Included manuscripts were evaluated based on previously published recommendations regarding the reporting and discussion of missing data. Manuscripts were graded on their degree of characterization of such observations. In addition, the methods used to manage missing data were examined. There were 539 manuscripts that met inclusion criteria. Among these, 208 (38.6%) manuscripts did not mention data completeness and 88 (16.3%) mentioned missing data but did not quantify the extent. Only a handful (n = 26; 4.8%) quantified the 'missingness' of all variables. Most articles (n = 477; 88.5%) contained no details such as a comparison between patient characteristics in cohorts with and without missing data. Of the 331 articles which made at least some mention of data completeness, the method of managing missing data was unknown in 34 (10.3%). When method(s) to handle missing data were identified, 234 (78.8%) manuscripts used complete case analysis only, 18 (6.1%) used multiple imputation only and 34 (11.4%) used a combination of these. Most manuscripts using trauma registry data did not quantify the extent of missing data for any variables and contained minimal discussion regarding missingness. Out of the studies which identified a method of managing missing data, most used complete case analysis, a method that may bias results. The lack of standardization in the reporting and management of missing data questions the validity of

Cardiac arrest risk standardization using administrative data compared to registry data.

Directory of Open Access Journals (Sweden)

Anne V Grossestreuer

Full Text Available Methods for comparing hospitals regarding cardiac arrest (CA outcomes, vital for improving resuscitation performance, rely on data collected by cardiac arrest registries. However, most CA patients are treated at hospitals that do not participate in such registries. This study aimed to determine whether CA risk standardization modeling based on administrative data could perform as well as that based on registry data.Two risk standardization logistic regression models were developed using 2453 patients treated from 2000-2015 at three hospitals in an academic health system. Registry and administrative data were accessed for all patients. The outcome was death at hospital discharge. The registry model was considered the "gold standard" with which to compare the administrative model, using metrics including comparing areas under the curve, calibration curves, and Bland-Altman plots. The administrative risk standardization model had a c-statistic of 0.891 (95% CI: 0.876-0.905 compared to a registry c-statistic of 0.907 (95% CI: 0.895-0.919. When limited to only non-modifiable factors, the administrative model had a c-statistic of 0.818 (95% CI: 0.799-0.838 compared to a registry c-statistic of 0.810 (95% CI: 0.788-0.831. All models were well-calibrated. There was no significant difference between c-statistics of the models, providing evidence that valid risk standardization can be performed using administrative data.Risk standardization using administrative data performs comparably to standardization using registry data. This methodology represents a new tool that can enable opportunities to compare hospital performance in specific hospital systems or across the entire US in terms of survival after CA.

Further evidence for an association between self-reported health and cardiovascular as well as cortisol reactions to acute psychological stress

NARCIS (Netherlands)

de Rooij, Susanne R.; Roseboom, Tessa J.

2010-01-01

In a recent study, the association between cardiovascular reactions to acute psychological stress and self-reported health was examined. Participants with excellent or good self-reported health exhibited higher cardiovascular reactivity than those who reported fair or poor health. We investigated

United States Transuranium Registry. Annual report, October 1, 1978-October 1, 1979. HEHF 30

International Nuclear Information System (INIS)

1982-01-01

Appendix No. 4 provides greater detail for the USTR autopsy cases than is presented in the summary form in the Annual Report for the period October 1, 1978 to October 1, 1979. On some data sheets there are blanks or notations indicating incomplete information. A major portion of these data omissions is expected to be retrieved as a result of continued efforts and unavoidable delays. Some data while available has not yet been formally released to the Registry pending further analyses and publication by the personnel of the cooperating facility. Formerly, if no information was given or indicated by health physics as to pre-death chest burden, they were treated as negative and the whole body burden reported as the same as the systemic burden. In the current report this assumption regarding chest burdens has not been made and only the systemic health physics estimates are given

Self-reported post-exertional fatigue in Gulf War veterans: roles of autonomic testing

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Li, Mian; Xu, Changqing; Yao, Wenguo; Mahan, Clare M.; Kang, Han K.; Sandbrink, Friedhelm; Zhai, Ping; Karasik, Pamela A.

2014-01-01

To determine if objective evidence of autonomic dysfunction exists from a group of Gulf War veterans with self-reported post-exertional fatigue, we evaluated 16 Gulf War ill veterans and 12 Gulf War controls. Participants of the ill group had self- reported, unexplained chronic post-exertional fatigue and the illness symptoms had persisted for years until the current clinical study. The controls had no self-reported post-exertional fatigue either at the time of initial survey nor at the time of the current study. We intended to identify clinical autonomic disorders using autonomic and neurophysiologic testing in the clinical context. We compared the autonomic measures between the 2 groups on cardiovascular function at both baseline and head-up tilt, and sudomotor function. We identified 1 participant with orthostatic hypotension, 1 posture orthostatic tachycardia syndrome, 2 distal small fiber neuropathy, and 1 length dependent distal neuropathy affecting both large and small fiber in the ill group; whereas none of above definable diagnoses was noted in the controls. The ill group had a significantly higher baseline heart rate compared to controls. Compound autonomic scoring scale showed a significant higher score (95% CI of mean: 1.72–2.67) among ill group compared to controls (0.58–1.59). We conclude that objective autonomic testing is necessary for the evaluation of self-reported, unexplained post-exertional fatigue among some Gulf War veterans with multi-symptom illnesses. Our observation that ill veterans with self-reported post-exertional fatigue had objective autonomic measures that were worse than controls warrants validation in a larger clinical series. PMID:24431987

Race and Beta-Blocker Survival Benefit in Patients With Heart Failure: An Investigation of Self-Reported Race and Proportion of African Genetic Ancestry.

Science.gov (United States)

Luzum, Jasmine A; Peterson, Edward; Li, Jia; She, Ruicong; Gui, Hongsheng; Liu, Bin; Spertus, John A; Pinto, Yigal M; Williams, L Keoki; Sabbah, Hani N; Lanfear, David E

2018-05-08

It remains unclear whether beta-blockade is similarly effective in black patients with heart failure and reduced ejection fraction as in white patients, but self-reported race is a complex social construct with both biological and environmental components. The objective of this study was to compare the reduction in mortality associated with beta-blocker exposure in heart failure and reduced ejection fraction patients by both self-reported race and by proportion African genetic ancestry. Insured patients with heart failure and reduced ejection fraction (n=1122) were included in a prospective registry at Henry Ford Health System. This included 575 self-reported blacks (129 deaths, 22%) and 547 self-reported whites (126 deaths, 23%) followed for a median 3.0 years. Beta-blocker exposure (BBexp) was calculated from pharmacy claims, and the proportion of African genetic ancestry was determined from genome-wide array data. Time-dependent Cox proportional hazards regression was used to separately test the association of BBexp with all-cause mortality by self-reported race or by proportion of African genetic ancestry. Both sets of models were evaluated unadjusted and then adjusted for baseline risk factors and beta-blocker propensity score. BBexp effect estimates were protective and of similar magnitude both by self-reported race and by African genetic ancestry (adjusted hazard ratio=0.56 in blacks and adjusted hazard ratio=0.48 in whites). The tests for interactions with BBexp for both self-reported race and for African genetic ancestry were not statistically significant in any model ( P >0.1 for all). Among black and white patients with heart failure and reduced ejection fraction, reduction in all-cause mortality associated with BBexp was similar, regardless of self-reported race or proportion African genetic ancestry. © 2018 The Authors. Published on behalf of the American Heart Association, Inc., by Wiley.

Novel features of 3q29 deletion syndrome: Results from the 3q29 registry

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Glassford, Megan R.; Rosenfeld, Jill A.; Freedman, Alexa A.; Zwick, Michael E.

2016-01-01

3q29 deletion syndrome is caused by a recurrent, typically de novo heterozygous 1.6 Mb deletion, but because incidence of the deletion is rare (1 in 30,000 births) the phenotype is not well described. To characterize the range of phenotypic manifestations associated with 3q29 deletion syndrome, we have developed an online registry (3q29deletion.org) for ascertainment of study subjects and phenotypic data collection via Internet‐based survey instruments. We report here on data collected during the first 18 months of registry operation, from 44 patients. This is the largest cohort of 3q29 deletion carriers ever assembled and surveyed in a systematic way. Our data reveal that 28% of registry participants report neuropsychiatric phenotypes, including anxiety disorder, panic attacks, depression, bipolar disorder, and schizophrenia. Other novel findings include a high prevalence (64%) of feeding problems in infancy and reduced weight at birth for 3q29 deletion carriers (average reduction 13.9 oz (394 g), adjusted for gestational age and sex, P = 6.5e‐07). We further report on the frequency of heart defects, autism, recurrent ear infections, gastrointestinal phenotypes, and dental phenotypes, among others. We also report on the expected timing of delayed developmental milestones. This is the most comprehensive description of the 3q29 deletion phenotype to date. These results are clinically actionable toward improving patient care for 3q29 deletion carriers, and can guide the expectations of physicians and parents. These data also demonstrate the value of patient‐reported outcomes to reveal the full phenotypic spectrum of rare genomic disorders. © 2016 The Authors. American Journal of Medical Genetics Part A Published by Wiley Periodicals, Inc. PMID:26738761

FORWARD: A Registry and Longitudinal Clinical Database to Study Fragile X Syndrome.

Science.gov (United States)

Sherman, Stephanie L; Kidd, Sharon A; Riley, Catharine; Berry-Kravis, Elizabeth; Andrews, Howard F; Miller, Robert M; Lincoln, Sharyn; Swanson, Mark; Kaufmann, Walter E; Brown, W Ted

2017-06-01

Advances in the care of patients with fragile X syndrome (FXS) have been hampered by lack of data. This deficiency has produced fragmentary knowledge regarding the natural history of this condition, healthcare needs, and the effects of the disease on caregivers. To remedy this deficiency, the Fragile X Clinic and Research Consortium was established to facilitate research. Through a collective effort, the Fragile X Clinic and Research Consortium developed the Fragile X Online Registry With Accessible Research Database (FORWARD) to facilitate multisite data collection. This report describes FORWARD and the way it can be used to improve health and quality of life of FXS patients and their relatives and caregivers. FORWARD collects demographic information on individuals with FXS and their family members (affected and unaffected) through a 1-time registry form. The longitudinal database collects clinician- and parent-reported data on individuals diagnosed with FXS, focused on those who are 0 to 24 years of age, although individuals of any age can participate. The registry includes >2300 registrants (data collected September 7, 2009 to August 31, 2014). The longitudinal database includes data on 713 individuals diagnosed with FXS (data collected September 7, 2012 to August 31, 2014). Longitudinal data continue to be collected on enrolled patients along with baseline data on new patients. FORWARD represents the largest resource of clinical and demographic data for the FXS population in the United States. These data can be used to advance our understanding of FXS: the impact of cooccurring conditions, the impact on the day-to-day lives of individuals living with FXS and their families, and short-term and long-term outcomes. Copyright © 2017 by the American Academy of Pediatrics.

Factors associated with false-positive self-reported adherence to antihypertensive drugs.

Science.gov (United States)

Tedla, Y G; Bautista, L E

2017-05-01

Self-reported medication adherence is known to overestimate true adherence. However, little is known about patient factors that may contribute to the upward bias in self-reported medication adherence. The objective of this study is to examine whether demographic, behavioral, medication and mood factors are associated with being a false-positive self-reported adherer (FPA) to antihypertensive drug treatment. We studied 175 patients (mean age: 50 years; 57% men) from primary-care clinics starting antihypertensive drug treatment. Self-reported adherence (SRA) was measured with the Medication Adherence Report Scale (MARS) and by the number of drug doses missed in the previous week/month, and compared with pill count adherence ratio (PCAR) as gold standard. Data on adherence, demographic, behavioral, medication and mood factors were collected at baseline and every 3 months up to 1 year. FPA was defined as being a non-adherer by PCAR and an adherer by self-report. Mixed effect logistic regression was used for the analysis. Twenty percent of participants were FPA. Anxiety increased (odds ratio (OR): 3.00; P=0.01), whereas smoking (OR: 0.40; P=0.03) and drug side effects (OR: 0.46, P=0.03) decreased the probability for FPA by MARS. Education below high-school completion increased the probability of being an FPA as measured by missing doses in the last month (OR: 1.66; P=0.04) and last week (OR: 1.88; P=0.02). The validity of SRA varies significantly according to drug side effects, behavioral factors and patient's mood. Careful consideration should be given to the use of self-reported measures of adherence among patients likely to be false-positive adherers.

A web-based, patient driven registry for Angelman syndrome: the global Angelman syndrome registry.

Science.gov (United States)

Napier, Kathryn R; Tones, Megan; Simons, Chloe; Heussler, Helen; Hunter, Adam A; Cross, Meagan; Bellgard, Matthew I

2017-08-01

Angelman syndrome (AS) is a rare neurodevelopmental disorder that is characterised by severe global developmental delays, ataxia, loss of speech, epilepsy, sleep disorders, and a happy disposition. There is currently no cure for AS, though several pharmaceutical companies are anticipating drug trials for new therapies to treat AS. The Foundation for Angelman Therapeutics (FAST) Australia therefore identified a need for a global AS patient registry to identify patients for recruitment for clinical trials.The Global AS Registry was deployed in September 2016 utilising the Rare Disease Registry Framework, an open-source tool that enables the efficient creation and management of patient registries. The Global AS Registry is web-based and allows parents and guardians worldwide to register, provide informed consent, and enter data on individuals with AS. 286 patients have registered in the first 8 months since deployment.We demonstrate the successful deployment of the first patient-driven global registry for AS. The data generated from the Global AS Registry will be crucial in identifying patients suitable for clinical trials and in informing research that will identify treatments for AS, and ultimately improve the lives of individuals and their families living with AS.

Differences in self-reported physical limitation among older women and men in Ismailia, Egypt.

Science.gov (United States)

Khadr, Zeinab; Yount, Kathryn

2012-09-01

This study explores the reasons for gender differences in self-reported physical limitation among older adults in Ismailia, Egypt. 435 women and 448 men, 50 years and older in Ismailia, Egypt, participated in a social survey and tests of physical performance. Ordered logit models were estimated to compare unadjusted gender differences in reported disability with these differences adjusted sequentially for (a) age and objective measures of physical performance, (b) self-reported morbidities and health care use, and (c) social and economic attributes. Compared with men, women more often reported higher levels of limitation in activities of daily living (ADLs), upper-extremity range of motion (ROM), and lower-extremity gross mobility (GM). Adjusting for age and objective measures of physical performance, women and men had similar odds of self-reporting difficulty with ADLs. With sequential adjustments for the remaining variables, women maintained significantly higher odds of self-reported difficulty with upper-extremity ROM and lower-extremity GM. Cross-culturally, gender differences in self-reported disability may arise from objective and subjective perceptions of disability. Collectively, these results and those from prior studies in Bangladesh and the United States suggest that gender gaps in self-reported physical limitation may be associated with the degree of gender equality in society.

Health literacy, self-perceived health and self-reported chronic morbidity among older people in Kosovo.

Science.gov (United States)

Toci, Ervin; Burazeri, Genc; Jerliu, Naim; Sørensen, Kristine; Ramadani, Naser; Hysa, Bajram; Brand, Helmut

2015-09-01

The aim was to describe health literacy among the older population of Kosovo, an Albanian speaking post-war country in the Western Balkans, in the context of self-perceived health status and self-reported chronic morbidity. A cross-sectional study was conducted in Kosovo in 2011 including 1753 individuals aged ≥ 65 years (886 men, 867 women; mean age 73.4 ± 6.3 years; response rate: 77%). Participants were asked to assess, on a scale from 1 to 5, their level of difficulty with regard to access, understanding, appraisal and application of health information. Sub-scale scores and an overall health literacy score were calculated for each participant. Information on self-perceived health status, presence and number of chronic diseases and socioeconomic characteristics was also collected. Mean values of the overall health literacy score and all sub-scale scores (access, understanding, appraisal and application) were lower among older people who reported a poorer health status or at least one chronic condition compared with individuals who perceived their health status as good or had no chronic conditions (p association between health literacy levels and self-perceived health and chronic morbidity in this post-war European population. The putative link with chronic morbidity and lower adherence to health services is hard to establish through this cross-sectional study. Prospective population-based studies should be conducted in Kosovo and other transitional settings to replicate these findings and properly address the causal relationship between health literacy and health status. © The Author (2014). Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

Statistics of bone sarcoma in Japan: Report from the Bone and Soft Tissue Tumor Registry in Japan.

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Ogura, Koichi; Higashi, Takahiro; Kawai, Akira

2017-01-01

No previous reports to date have characterized the national profiles of bone sarcoma overall. In the present study, we aimed to describe the nationwide statistics of bone sarcoma in Japan by analyzing data from the Bone and Soft Tissue Tumor (BSTT) Registry in Japan, which is a nationwide organ-specific cancer registry for bone and soft tissue tumor. We identified 2773 patients with bone sarcomas using the BSTT Registry during 2006-2012. We extracted the data regarding patient demographics, treatment, and prognosis at the last follow-up for each patient. There was a slight male preponderance. The age distribution had 2 peaks overall: one in the second decade and the other in the sixth to seventh decade with the proportion of the elderly patients over 60 years approximately 30%. The most frequent tumor locations were the lower extremity (N = 1342; 48.4%) and the trunk (N = 1038; 37.4%). We also showed the significant association between disease-specific survival and patient's age, histologic grade and subtype, tumor size and location, and limb salvage status based on 1401 patients with bone sarcoma, and demonstrated the worst disease-specific survival in the elderly patients. The present study is the first study to have analyzed data from the BSTT Registry and has provided an overview of the epidemiology, clinical features, treatment, prognosis, and significant factors affecting prognosis of patients with bone sarcoma in Japan based on cases assumed to have received relatively uniform treatment strategies. It is essential to document our data regarding the outcomes of elderly patients so that other countries showing similar population aging trends can learn from our experiences. Copyright © 2016 The Japanese Orthopaedic Association. Published by Elsevier B.V. All rights reserved.

RHEUMATOID ARTHRITIS IN THE RUSSIAN FEDERATION ACCORDING TO RUSSIAN ARTHRITIS REGISTRY DATA (COMMUNICATION I

Directory of Open Access Journals (Sweden)

E. L. Nasonov

2016-01-01

Full Text Available The paper presents the materials of the Russian Arthritis Registry (OREL that includes 3276 patients from 11 Russian Federation's largest research-and-practical centers situated in Moscow, Saint Petersburg, Novosibirsk, Kazan, Tula, Yaroslavl, Tyumen. It discusses the main goals of setting up registries, compares the results of an analysis of the data available in the Russian Registry OREL and registries of European countries and the USA. The findings suggest that there is non-uniform information on clinical, laboratory, and instrumental parameters in the national registers of a number of European countries and the USA. According to its basic characteristics, the Russian Registry OREL compares favorably with a number of other registries in the completeness of data collection, which allows a general idea of rheumatoidarthritis (RA patients in Russia. For further development of the OREL Registry, it is necessary to concentrate our attention on the following main areas: to improve the quality of filling out documents; to follow-up patients receiving different RA therapy regimens according to the guidelines of the Association of Rheumatologists of Russia for the treatment of RA; to conduct in-depth studies of comorbidity, primarily depressive disorders; to analyze adverse reactions that make RA therapy difficult; to actively use modules for patients' self-rating of their condition; to develop nursing care, etc.

Reliability and sensitivity of the self-report of physician-diagnosed gout in the campaign against cancer and heart disease and the atherosclerosis risk in the community cohorts.

Science.gov (United States)

McAdams, Mara A; Maynard, Janet W; Baer, Alan N; Köttgen, Anna; Clipp, Sandra; Coresh, Josef; Gelber, Allan C

2011-01-01

gout is often defined by self-report in epidemiologic studies. Yet the validity of self-reported gout is uncertain. We evaluated the reliability and sensitivity of the self-report of physician-diagnosed gout in the Campaign Against Cancer and Heart Disease (CLUE II) and the Atherosclerosis Risk in the Community (ARIC) cohorts. the CLUE II cohort comprises 12,912 individuals who self-reported gout status on either the 2000, 2003, or 2007 questionnaires. We calculated reliability as the percentage of participants reporting having gout on more than 1 questionnaire using Cohen's κ statistic. The ARIC cohort comprises 11,506 individuals who self-reported gout status at visit 4. We considered a hospital discharge diagnosis of gout or use of a gout-specific medication as the standard against which to calculate the sensitivity of self-reported, physician-diagnosed gout. of the 437 CLUE II participants who self-reported physician-diagnosed gout in 2000, and subsequently answered the 2003 questionnaire, 75% reported gout in 2003 (κ = 0.73). Of the 271 participants who reported gout in 2000, 73% again reported gout at the 2007 followup questionnaire (κ = 0.63). In ARIC, 196 participants met the definition for gout prior to visit 4 and self-reported their gout status at visit 4. The sensitivity of a self-report of physician-diagnosed gout was 84%. Accuracy was similar across sex and race subgroups, but differed across hyperuricemia and education strata. these 2 population-based US cohorts suggest that self-report of physician-diagnosed gout has good reliability and sensitivity. Thus, self-report of a physician diagnosis of gout is appropriate for epidemiologic studies.

Meta-analysis of individual registry results enhances international registry collaboration.

Science.gov (United States)

Paxton, Elizabeth W; Mohaddes, Maziar; Laaksonen, Inari; Lorimer, Michelle; Graves, Stephen E; Malchau, Henrik; Namba, Robert S; Kärrholm, John; Rolfson, Ola; Cafri, Guy

2018-03-28

Background and purpose - Although common in medical research, meta-analysis has not been widely adopted in registry collaborations. A meta-analytic approach in which each registry conducts a standardized analysis on its own data followed by a meta-analysis to calculate a weighted average of the estimates allows collaboration without sharing patient-level data. The value of meta-analysis as an alternative to individual patient data analysis is illustrated in this study by comparing the risk of revision of porous tantalum cups versus other uncemented cups in primary total hip arthroplasties from Sweden, Australia, and a US registry (2003-2015). Patients and methods - For both individual patient data analysis and meta-analysis approaches a Cox proportional hazard model was fit for time to revision, comparing porous tantalum (n = 23,201) with other uncemented cups (n = 128,321). Covariates included age, sex, diagnosis, head size, and stem fixation. In the meta-analysis approach, treatment effect size (i.e., Cox model hazard ratio) was calculated within each registry and a weighted average for the individual registries' estimates was calculated. Results - Patient-level data analysis and meta-analytic approaches yielded the same results with the porous tantalum cups having a higher risk of revision than other uncemented cups (HR (95% CI) 1.6 (1.4-1.7) and HR (95% CI) 1.5 (1.4-1.7), respectively). Adding the US cohort to the meta-analysis led to greater generalizability, increased precision of the treatment effect, and similar findings (HR (95% CI) 1.6 (1.4-1.7)) with increased risk of porous tantalum cups. Interpretation - The meta-analytic technique is a viable option to address privacy, security, and data ownership concerns allowing more expansive registry collaboration, greater generalizability, and increased precision of treatment effects.

Measuring Cognitive Load: A Comparison of Self-Report and Physiological Methods

Science.gov (United States)

Joseph, Stacey

2013-01-01

This study explored three methods to measure cognitive load in a learning environment using four logic puzzles that systematically varied in level of intrinsic cognitive load. Participants' perceived intrinsic load was simultaneously measured with a self-report measure-a traditional subjective measure-and two objective, physiological measures…

Evidence and practice in spine registries A systematic review, and recommendations for future design of registries

NARCIS (Netherlands)

van Hooff, M.L.; Jacobs, W.C.H.; Willems, P.C.; Wouters, M.W.J.M.; de Kleuver, M.; Peul, W.C.; Ostelo, R.W.J.G.; Fritzell, P.

2015-01-01

Background and purpose-We performed a systematic review and a survey in order to (1) evaluate the evidence for the impact of spine registries on the quality of spine care, and with that, on patient-related outcomes, and (2) evaluate the methodology used to organize, analyze, and report the "quality

Validity and reproducibility of self-reported working hours among Japanese male employees.

Science.gov (United States)

Imai, Teppei; Kuwahara, Keisuke; Miyamoto, Toshiaki; Okazaki, Hiroko; Nishihara, Akiko; Kabe, Isamu; Mizoue, Tetsuya; Dohi, Seitaro

2016-07-22

Working long hours is a potential health hazard. Although self-reporting of working hours in various time frames has been used in epidemiologic studies, its validity is unclear. The objective of this study was to examine the validity and reproducibility of self-reported working hours among Japanese male employees. The participants were 164 male employees of four large-scale companies in Japan. For validity, the Spearman correlation between self-reported working hours in the second survey and the working hours recorded by the company was calculated for the following four time frames: daily working hours, monthly overtime working hours in the last month, average overtime working hours in the last 3 months, and the frequency of long working months (≥45 h/month) within the last 12 months. For reproducibility, the intraclass correlation between the first (September 2013) and second surveys (December 2013) was calculated for each of the four time frames. The Spearman correlations between self-reported working hours and those based on company records were 0.74, 0.81, 0.85, and 0.89 for daily, monthly, 3-monthly, and yearly time periods, respectively. The intraclass correlations for self-reported working hours between the two questionnaire surveys were 0.63, 0.66, 0.73, and 0.87 for the respective time frames. The results of the present study among Japanese male employees suggest that the validity of self-reported working hours is high for all four time frames, whereas the reproducibility is moderate to high.

Borderline but not Antisocial Personality Disorder Symptoms are Related to Self-Reported Partner Aggression in Late Middle-Age

Science.gov (United States)

Weinstein, Yana; Gleason, Marci E. J.; Oltmanns, Thomas F.

2012-01-01

We examined the relationship between personality pathology and the frequency of self-reported psychological and physical partner aggression in a community sample of 872 adults aged 55–64. Previous research suggests that antisocial and borderline personality disorder (PD) symptoms are associated with partner aggression. Controlling for gender, education, alcohol dependence, and other personality pathology, we found that borderline PD symptoms, which include abandonment fears, unstable identity, and affective instability, were significantly related to the frequency of self-reported aggression towards one’s partner. This relationship was observed regardless of whether the participant’s personality was described by a clinical interviewer, the participant themselves, or an informant chosen by the participant. Further, the relationship between borderline PD symptoms and self-reported partner aggression was moderated by gender such that women were driving the association. Conversely, antisocial PD symptoms, which include deceitfulness, irresponsibility, disregard for rules, and lack of remorse did not significantly account for variance in self-reported partner aggression. PMID:22732005

Self-appraisals and episodic memory: Different psychological factors related to patient versus informant reports of apathy in severe traumatic brain injury.

Science.gov (United States)

Arnould, Annabelle; Rochat, Lucien; Azouvi, Philippe; van der Linden, Martial

2018-01-09

Apathy is a core feature in patients with traumatic brain injury (TBI). The psychological processes underlying apathy are still unclear, and the few studies conducted on this subject have essentially focused on cognitive processes and informant reports of apathetic manifestations. The aims of the present study were to examine self-reports versus informant reports of diminished initiative/interest, as well as their relationship with different cognitive factors (attention/executive mechanisms, episodic memory, and multitasking) and personal identity factors (self-esteem and self-efficacy beliefs). To this end, 74 participants (38 patients with severe TBI matched with 36 control participants) were given three questionnaires to assess self-esteem, general self-efficacy beliefs, and anxio-depressive symptoms and five tasks to assess cognitive processes, including real-life multitasking. In addition, a questionnaire that assessed self-awareness of functional competencies and a questionnaire that assessed lack of initiative/interest were administered to each participant and their relatives. The main results showed that patients demonstrated an awareness of their lack of initiative/interest and that self-reported lack of initiative/interest was best predicted by low general self-efficacy beliefs and self-esteem, whereas informant-reported lack of initiative/interest was predicted by episodic memory difficulties. These results shed new light on the psychological processes related to apathetic manifestations, as well as the differing perspectives and lived experiences of patients and external observers in the TBI population, which opens interesting prospects for psychological interventions.

A Comparison of Self-Reported Hearing Handicap and Audiometric Thresholds in Nursing Home Residents

Directory of Open Access Journals (Sweden)

Nematolla Rouhbakhsh

2007-12-01

Full Text Available Background and Aim: Self-reported and questionaire method for hearing impairment assessment allow us to study and to detect the invisible related issues, while They can not be done by traditional audiometry procedures. The purpose of this study is to compare measurement of hearing handicap using self-reported and staff version of NHHI and hearing thresholds in nursing home residents. Materials and Method: The study participants were 43 individuals, 23 males and 20 females, aged 45-95 years. Pure tone average were calculated after conventional Pure tone audiometry . the self- and staff- reported questionnaire were also fulfilled. Results: Nine (20.9% individuals have normal hearing, 6 (14% have slight, 10 (23.3% mild, 7 (16.3% moderate, 6 (16.3% moderate to severe, 4 (9.3% severe, and 1 (2.3% profound hearing loss. Mean score of self and of staff reported versions were 32.22 % +29.31 and 32.67% +30.98, respectively. According to Kruskal-wallis test, there were significant correlation between self-reported and hearing level and between staff-reported and hearing level. The Pierson coefficient variation test between self and staff-reported, and self-reported and hearing level, staff-reported and hearing level showed significant correlation. Conclusion: The NHHI self assessment associated with other equipments significantly improved the identification and assessment of adults and elderly hearing handicap in nursing home residents. According to the study condition, it may be concluded that the self and staff version of NHHI questionnaire are significantly identical and can be used instead.

Communication, Coping, and Connections: Campers’ and Parents’ Perspectives of Self-Efficacy and Benefits of Participation in Deployment Support Camps

Directory of Open Access Journals (Sweden)

Christy D. Clary

2015-06-01

Full Text Available Military youth have unique challenges, particularly when a parent is deployed. Camp participation has been linked to multiple positive outcomes, thus camps have become popular as a setting for addressing these youth’s unique needs. With limited existing research on outcomes related to participation, this study explored to what extent participation in OMK camps affected military youth’s self-efficacy for communication, coping, and social skills. Participants responded to an online instrument three months after camp. Both campers and parents reported the largest increase in self-efficacy for communication skills, followed by social skills, and then coping skills. Open-ended responses overwhelmingly supported that developing friendships was one of the greatest benefits of attending a camp. The results are consistent with the literature regarding the importance of connectedness. Recommendations for conducting camps are offered. These finding may also be useful to those working with other special populations in the camp setting.

Five-year analysis from the ESPRIT 10-year postmarketing surveillance registry of adalimumab treatment for moderate to severe psoriasis.

Science.gov (United States)

Menter, Alan; Thaçi, Diamant; Papp, Kim A; Wu, Jashin J; Bereswill, Mareike; Teixeira, Henrique D; Rubant, Simone; Williams, David A

2015-09-01

ESPRIT is an ongoing, 10-year, observational registry, evaluating long-term safety and effectiveness of adalimumab treatment in routine clinical practice for patients with moderate to severe, chronic plaque psoriasis. Initial 5-year results are reported. Two populations were analyzed: the "all-treated" population received 1 or more adalimumab doses in registry, continuing adalimumab treatment from a current prescription or previous study participation, and included the "new-prescription" population initiating adalimumab 4 weeks or earlier preregistry entry. Data were collected from September 26, 2008, through November 30, 2013, for all-treated (n = 6059), which included new-prescription (n = 2580, 42.6%); median registry exposure was 765 and 677 days, respectively. In all-treated, rate (events per 100 patient-years of total adalimumab exposure [E/100PY]) of serious treatment-emergent adverse events (inside or outside of the registry) was 4.3 E/100PY, serious infection 1.0 E/100PY, malignancies 0.9 E/100PY (nonmelanoma skin cancers 0.6 E/100PY; melanomas <0.1 E/100PY). Standardized mortality ratio was 0.30 (95% confidence interval 0.19-0.44). Physician Global Assessment clear or minimal (effectiveness parameter) was achieved by 57.0% at 12 months and 64.7% at 60 months of treatment. Observational data are subject to outcome-reporting bias. No new safety signals were observed with adalimumab treatment during this initial 5-year registry review. Observed number of deaths was below expected. As-observed effectiveness remained stable through 60 months. Copyright © 2015 American Academy of Dermatology, Inc. Published by Elsevier Inc. All rights reserved.

42 CFR 137.16 - What if more than 50 Indian Tribes apply to participate in self-governance?

Science.gov (United States)

2010-10-01

... participate in self-governance? 137.16 Section 137.16 Public Health PUBLIC HEALTH SERVICE, DEPARTMENT OF...-GOVERNANCE Selection of Indian Tribes for Participation in Self-Governance § 137.16 What if more than 50 Indian Tribes apply to participate in self-governance? The first Indian Tribes who apply and are...

Accuracy of self-reported versus actual online gambling wins and losses.

Science.gov (United States)

Braverman, Julia; Tom, Matthew A; Shaffer, Howard J

2014-09-01

This study is the first to compare the accuracy of self-reported with actual monetary outcomes of online fixed odds sports betting, live action sports betting, and online casino gambling at the individual level of analysis. Subscribers to bwin.party digital entertainment's online gambling service volunteered to respond to the Brief Bio-Social Gambling Screen and questions about their estimated gambling results on specific games for the last 3 or 12 months. We compared the estimated results of each subscriber with his or her actual betting results data. On average, between 34% and 40% of the participants expressed a favorable distortion of their gambling outcomes (i.e., they underestimated losses or overestimated gains) depending on the time period and game. The size of the discrepancy between actual and self-reported results was consistently associated with the self-reported presence of gambling-related problems. However, the specific direction of the reported discrepancy (i.e., favorable vs. unfavorable bias) was not associated with gambling-related problems. PsycINFO Database Record (c) 2014 APA, all rights reserved.

Prevalence and Correlates of Self-Reported ADHD Symptoms in Children Attending School in India.

Science.gov (United States)

Jaisoorya, T S; Beena, K V; Beena, M; Ellangovan, K; George, Sanju; Thennarasu, K; Srinath, Shoba

2016-09-02

To study the prevalence and correlates of self-reported ADHD symptoms among school-going adolescents from Kerala, India. Seven thousand five hundred sixty students from Classes 8, 10, and 12, aged 12 to 19 years, across 73 schools selected by cluster random sampling, were invited to participate, but only 7,150 successfully completed the questionnaire incorporating standardized instruments. Three hundred five (4.3%) self-reported symptoms for ADHD combined type, 131 (1.8%) for ADHD hyperactive-impulsive type, and 102 (1.4%) for ADHD inattentive type with a male predominance. Binary logistic regression analysis showed that those with symptoms of ADHD (combined type) compared with the non-ADHD group had poorer academic performance, significantly higher substance use, psychological distress, suicidality, and sexual abuse. The high prevalence of self-reported ADHD symptoms and its association with negative correlates previously reported in literature in those with a diagnosis of ADHD suggests that clinically significant self-reported ADHD symptoms could be as disabling as ADHD. © The Author(s) 2016.

Current variables, definitions and endpoints of the European Cardiovascular Magnetic Resonance Registry

Directory of Open Access Journals (Sweden)

Schwitter Juerg

2009-11-01

Full Text Available Abstract Background Cardiovascular Magnetic Resonance (CMR is increasingly used in daily clinical practice. However, little is known about its clinical utility such as image quality, safety and impact on patient management. In addition, there is limited information about the potential of CMR to acquire prognostic information. Methods The European Cardiovascular Magnetic Resonance Registry (EuroCMR Registry will consist of two parts: 1 Multicenter registry with consecutive enrolment of patients scanned in all participating European CMR centres using web based online case record forms. 2 Prospective clinical follow up of patients with suspected coronary artery disease (CAD and hypertrophic cardiomyopathy (HCM every 12 months after enrolment to assess prognostic data. Conclusion The EuroCMR Registry offers an opportunity to provide information about the clinical utility of routine CMR in a large number of cases and a diverse population. Furthermore it has the potential to gather information about the prognostic value of CMR in specific patient populations.

Danish Registry of Childhood and Adolescent Diabetes

Directory of Open Access Journals (Sweden)

Svensson J

2016-10-01

Full Text Available Jannet Svensson,1 Charlotte Cerqueira,2 Per Kjærsgaard,3 Lene Lyngsøe,4 Niels Thomas Hertel,5 Mette Madsen,6 Henrik B Mortensen,1 Jesper Johannesen1 1Pediatric and Adolescent Department, Copenhagen University Hospital, Herlev and Gentofte, Herlev, 2Registry Support Centre (East – Epidemiology and Biostatistics, Research Centre for Prevention and Health, Capital Region of Denmark, Glostrup, 3Pediatric Department, County Hospital Herning, Herning, 4Pediatric and Adolescent Department, Nordsjællands Hospital, Hillerød, 5HC Andersen Childrens Hospital, Odense University Hospital, Odense, 6Pediatric Department, Aalborg University Hospital, Aalborg, Denmark Aim: The aims of the Danish Registry of Childhood and Adolescent Diabetes (DanDiabKids are to monitor and improve the quality of care for children and adolescents with diabetes in Denmark and to follow the incidence and prevalence of diabetes. Study population: The study population consists of all children diagnosed with diabetes before the age of 15 years since 1996. Since 2015, every child followed up at a pediatric center (<18 years of age will be included. Main variables: The variables in the registry are the quality indicators, demographic variables, associated conditions, diabetes classification, family history of diabetes, growth parameters, self-care, and treatment variables. The quality indicators are selected based on international consensus of measures of good clinical practice. The indicators are metabolic control as assessed by HbA1c, blood pressure, albuminuria, retinopathy, neuropathy, number of severe hypoglycemic events, and hospitalization with ketoacidosis. Descriptive data: The number of children diagnosed with diabetes is increasing with ~3% per year mainly for type 1 diabetes (ie, 296 new patients <15 years of age were diagnosed in 2014. The disease management has changed dramatically with more children treated intensively with multiple daily injections, insulin pumps

Converged Registries Solution (CRS)

Data.gov (United States)

Department of Veterans Affairs — The Converged Registries platform is a hardware and software architecture designed to host individual patient registries and eliminate duplicative development effort...

A Comparison of Self-reported Medication Adherence to Concordance Between Part D Claims and Medication Possession.

Science.gov (United States)

Savitz, Samuel T; Stearns, Sally C; Zhou, Lei; Thudium, Emily; Alburikan, Khalid A; Tran, Richard; Rodgers, Jo E

2017-05-01

Medicare Part D claims indicate medication purchased, but people who are not fully adherent may extend prescription use beyond the interval prescribed. This study assessed concordance between Part D claims and medication possession at a study visit in relation to self-reported medication adherence. We matched Part D claims for 6 common medications to medications brought to a study visit in 2011-2013 for the Atherosclerosis Risk in Communities study. The combined data consisted of 3027 medication events (claims, medications possessed, or both) for 2099 Atherosclerosis Risk in Communities study participants. Multinomial logistic regression estimated the association of concordance (visit only, Part D only, or both) with self-reported medication adherence while controlling for sociodemographic characteristics, veteran status, and availability under Generic Drug Discount Programs. Relative to participants with high adherence, medication events for participants with low adherence were approximately 25 percentage points less likely to match and more likely to be visit only (PDiscount Programs were 3 percentage points more likely to be visit only. Part D claims were substantially less likely to be concordant with medications possessed at study visit for participants with low self-reported adherence. This result supports the construction of adherence proxies such as proportion days covered using Part D claims.

Self-esteem, social participation, and quality of life in patients with multiple sclerosis

OpenAIRE

Mikula, Pavol; Nagyova, Iveta; Krokavcova, Martina; Vitkova, Marianna; Rosenberger, Jaroslav; Szilasiova, Jarmila; Gdovinova, Zuzana; Stewart, Roy E; Groothoff, Johan W; van Dijk, Jitse P

2017-01-01

The aim of this study is to explore whether self-esteem and social participation are associated with the physical and mental quality of life (Physical Component Summary, Mental Component Summary) and whether self-esteem can mediate the association between these variables. We collected information from 118 consecutive multiple sclerosis patients. Age, gender, disease duration, disability status, and participation were significant predictors of Physical Component Summary, explaining 55.4 percen...

The German Aortic Valve Registry (GARY): a nationwide registry for patients undergoing invasive therapy for severe aortic valve stenosis.

Science.gov (United States)

Beckmann, A; Hamm, C; Figulla, H R; Cremer, J; Kuck, K H; Lange, R; Zahn, R; Sack, S; Schuler, G C; Walther, T; Beyersdorf, F; Böhm, M; Heusch, G; Funkat, A K; Meinertz, T; Neumann, T; Papoutsis, K; Schneider, S; Welz, A; Mohr, F W

2012-07-01

aortic valve procedures in Germany joined the registry. By now, 91 sites which perform TAVI in Germany participate and more than 15,000 datasets are already in the registry.Conclusion The implementation of new or innovative medical therapies needs supervision under the conditions of a well-structured scientific project. Up to now relevant data for implementation of TAVI and long-term results are missing. In contrast to randomized controlled trials, GARY is a prospective, controlled, 5-year observational multicenter registry, and a real world investigation with only one exclusion criterion, the absence of patients' written consent. Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.

Myositis registries and biorepositories: powerful tools to advance clinical, epidemiologic and pathogenic research.

Science.gov (United States)

Rider, Lisa G; Dankó, Katalin; Miller, Frederick W

2014-11-01

Clinical registries and biorepositories have proven extremely useful in many studies of diseases, especially rare diseases. Given their rarity and diversity, the idiopathic inflammatory myopathies, or myositis syndromes, have benefited from individual researchers' collections of cohorts of patients. Major efforts are being made to establish large registries and biorepositories that will allow many additional studies to be performed that were not possible before. Here, we describe the registries developed by investigators and patient support groups that are currently available for collaborative research purposes. We have identified 46 myositis research registries, including many with biorepositories, which have been developed for a wide variety of purposes and have resulted in great advances in understanding the range of phenotypes, clinical presentations, risk factors, pathogenic mechanisms, outcome assessment, therapeutic responses, and prognoses. These are now available for collaborative use to undertake additional studies. Two myositis patient registries have been developed for research, and myositis patient support groups maintain demographic registries with large numbers of patients available to be contacted for potential research participation. Investigator-initiated myositis research registries and biorepositories have proven extremely useful in understanding many aspects of these rare and diverse autoimmune diseases. These registries and biorepositories, in addition to those developed by myositis patient support groups, deserve continued support to maintain the momentum in this field as they offer major opportunities to improve understanding of the pathogenesis and treatment of these diseases in cost-effective ways.

Cross sectional study of factors associated to self-reported blood-borne infections among drug users.

Science.gov (United States)

Reyes-Urueña, Juliana; Brugal, M Teresa; Majo, Xavier; Domingo-Salvany, Antonia; Caylà, Joan A

2015-11-13

The study's aim was to estimate the self-reported prevalence of Human Immunodeficiency Virus (HIV) and Hepatitis C Virus (HCV), and to describe their associated risk factors in a population of users of illicit drugs recruited in Catalonia- Spain, during 2012. Cross-sectional study. People with illicit drugs use were selected in three different types of healthcare centres. The questionnaire was a piloted, structured ad hoc instrument. An analysis was made to identify factors associated to self-reported HCV, HIV and co-infection. Correlates of reported infections were determined using univariate and multivariate Poisson regression (with robust variance). Among 512 participants, 39.65% self-reported positive serostatus for HCV and 14.84% for HIV, co-infection was reported by 13.48%. Among the 224 injecting drug users (IDUs), 187 (83.48%), 68 (30.36%) and 66 (29.46%) reported being positive for HCV, HIV and co-infection, respectively. A higher proportion of HIV-infected cases was observed among women, (18.33% vs. 13.78% in men). Prevalence of HCV, HIV and co-infection were higher among participants with early onset of drug consumption, long periods of drug injection or who were unemployed. A positive serostatus was self-reported by 21(7.34%) participants who did not report any injection; among them 16 and eight, reported being positive for HCV and HIV, respectively; three reported co-infection. Only two people declared exchanging sex for money. For those that reported a negative test, the median time since the last HIV test was 11.41 months (inter-quartile range (IQR) 4-12) and for the HCV test was 4.5 months (IQR 2-7). Among drug users in Catalonia, HIV, HCV and co-infection prevalence are still a big issue especially among IDUs. Women and drug users who have never injected drugs are groups with a significant risk of infection; this might be related to their high-risk behaviours and to being unaware of their serological status.

Department of Transportation vs self-reported data on motor vehicle collisions and driving convictions for stroke survivors: do they agree?

Science.gov (United States)

Finestone, Hillel M; Guo, Meiqi; O'Hara, Paddi; Greene-Finestone, Linda; Marshall, Shawn C; Hunt, Lynn; Jessup, Anita; Biggs, Jennifer

2011-08-01

Research on stroke survivors' driving safety has typically used either self-reports or government records, but the extent to which the 2 may differ is not known. We compared government records and self-reports of motor vehicle collisions and driving convictions in a sample of stroke survivors. The 56 participants were originally recruited for a prospective study on driving and community re-integration post-stroke; the study population consisted of moderately impaired stroke survivors without severe communication disorders who had been referred for a driving assessment. The driving records of the 56 participants for the 5 years before study entry and the 1-year study period were acquired with written consent from the Ministry of Transportation of Ontario (MTO), Canada. Self-reports of collisions and convictions were acquired via a semistructured interview and then compared with the MTO records. Forty-three participants completed the study. For 7 (13.5%) the MTO records did not match the self-reports regarding collision involvement, and for 9 (17.3%) the MTO records did not match self-reports regarding driving convictions. The kappa coefficient for the correlation between MTO records and self-reports was 0.52 for collisions and 0.47 for convictions (both in the moderate range of agreement). When both sources of data were consulted, up to 56 percent more accidents and up to 46 percent more convictions were identified in the study population in the 5 years before study entry compared to when either source was used alone. In our population of stroke survivors, self-reports of motor vehicle collisions and driving convictions differed from government records. In future studies, the use of both government and self-reported data would ensure a more accurate picture of driving safety post-stroke.

The Danish Lung Cancer Registry

DEFF Research Database (Denmark)

Jakobsen, Erik; Rasmussen, Torben Riis

2016-01-01

AIM OF DATABASE: The Danish Lung Cancer Registry (DLCR) was established by the Danish Lung Cancer Group. The primary and first goal of the DLCR was to improve survival and the overall clinical management of Danish lung cancer patients. STUDY POPULATION: All Danish primary lung cancer patients since...... 2000 are included into the registry and the database today contains information on more than 50,000 cases of lung cancer. MAIN VARIABLES: The database contains information on patient characteristics such as age, sex, diagnostic procedures, histology, tumor stage, lung function, performance...... the results are commented for local, regional, and national audits. Indicator results are supported by descriptive reports with details on diagnostics and treatment. CONCLUSION: DLCR has since its creation been used to improve the quality of treatment of lung cancer in Denmark and it is increasingly used...

Self-reported dietary energy intake of normal weight, overweight and obese adolescents.

Science.gov (United States)

Vance, Vivienne A; Woodruff, Sarah J; McCargar, Linda J; Husted, Janice; Hanning, Rhona M

2009-02-01

The purpose of the present paper was to assess dietary energy reporting as a function of sex and weight status among Ontario and Alberta adolescents, using the ratio of energy intake (EI) to estimated BMR (BMRest). Data were collected using the FBQ, a validated web-based dietary assessment tool (including a 24 h dietary recall, FFQ, and food and physical activity behavioural questions). BMI was calculated from self-reported height and weight and participants were classified as normal weight, overweight or obese. BMR was calculated using the WHO equations (based on weight). Reporting status was identified using the ratio EI:BMRest. Data were collected in public, Catholic and private schools in Ontario and Alberta, Canada. A total of 1917 (n 876 male and n 1041 female) students (n 934 grade 9 and n 984 grade 10) participated. The mean EI:BMRest ratio across all participants was 1.4 (sd 0.6), providing evidence of under-reporting for the total sample. Females under-reported more than males (t = 6.27, P < 0.001), and under-reporting increased with increasing weight status for both males (F = 33.21, P < 0.001) and females (F = 14.28, P < 0.001). After removing those who reported eating less to lose weight, the EI:BMRest was 1.56 (sd 0.6) for males and 1.4 (sd 0.6) for females. The present study highlights methodological challenges associated with self-reported dietary data. Systematic differences in under-reporting of dietary intake by gender and weight status were observed using a web-based survey, similar to observations made using paper-based 24 h recalls and dietitian interviews.

Review of U.S. registries for psoriasis.

Science.gov (United States)

Amin, Mina; No, Daniel J; Wu, Jashin J

2017-12-01

Patient registries are databases comprised of standardized clinical data for a specific population of patients with a particular disease or medical condition. Information from patient registries allows clinicians to assess long-lasting outcomes in patients with a specific disease, such as psoriasis. Our primary objective was to identify available psoriasis registries in the United States (U.S.) and evaluate the application of patient registries compared to clinical trials. We searched Google, the Registry of Patient Registries, Orphanet and ClinicalTrials.gov to create a list of U.S. psoriasis registries. We also performed a literature review on the application of psoriasis registries using PubMed. We identified 6 psoriasis patient registries in the United States. Patient registries are frequently used for psoriasis in the U.S. and provide important information about the safety, efficacy and long-term effects of systemic therapies.

42 CFR 137.32 - Is a compact required to participate in self-governance?

Science.gov (United States)

2010-10-01

...-governance? 137.32 Section 137.32 Public Health PUBLIC HEALTH SERVICE, DEPARTMENT OF HEALTH AND HUMAN SERVICES INDIAN HEALTH SERVICE, DEPARTMENT OF HEALTH AND HUMAN SERVICES TRIBAL SELF-GOVERNANCE Self-Governance compact § 137.32 Is a compact required to participate in self-governance? Yes, Tribes must have a...

Validating self-reported mobile phone use in adults using a newly developed smartphone application.

Science.gov (United States)

Goedhart, Geertje; Kromhout, Hans; Wiart, Joe; Vermeulen, Roel

2015-11-01

Interpretation of epidemiological studies on health effects from mobile phone use is hindered by uncertainties in the exposure assessment. We used a newly developed smartphone application (app) to validate self-reported mobile phone use and behaviour among adults. 107 participants (mean age 41.4 years) in the Netherlands either downloaded the software app on their smartphone or were provided with a study smartphone for 4 weeks. The app recorded the number and duration of calls, text messages, data transfer, laterality and hands-free use. Self-reported mobile phone use was collected before using the app and after 6 months through an interviewer-administered questionnaire. The geometric mean ratios (GMR, 95% CI) and Spearman correlations (r) of self-reported (after 6 months) versus recorded number and duration of calls were: GMR=0.65 (0.53 to 0.80), r=0.53; and GMR=1.11 (0.86 to 1.42), r=0.57 respectively. Participants held the phone on average for 86% of the total call time near the head. Self-reported right side users held the phone for 70.7% of the total call time on the right side of the head, and left side users for 66.2% on the left side of the head. The percentage of total call time that the use of hands-free devices (headset, speaker mode, Bluetooth) was recorded increased with increasing frequency of reported hands-free device usage. The observed recall errors and precision of reported laterality and hands-free use can be used to quantify and improve radiofrequency exposure models based on self-reported mobile phone use. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Self-Reported Perceptions of Sleep Quality and Resilience Among Dance Students.

Science.gov (United States)

Arbinaga, F

2018-04-01

This study examined relationships between self-perceived sleep quality and resilience among 116 dance students (Mean age = 21.6 years; SD = 4.348). who self-reported sleep quality with the Pittsburgh Sleep Quality Index (PSQI) and personal resilience with the Resilience Scale (RS). Most participants (59.5%) reported poor sleep quality on the PSQI, with 62.9% of the women and 42.1% of the men ( p = .092) scoring higher than five points on this instrument. On the RS, a large majority of the participants (75%) obtained scores less than 147, indicating low resilience, with no significant gender differences observed. Those reporting poor sleep quality (PSQI scores > 5) obtained lower resilience scores (RS resilience (Odds Ratio = 3.273) relative to those with good sleep quality ( p = .006). Those with shorter duration sleep (claiming they slept resilience (Odds Ratio = 3.266), relative to those with longer duration sleep (>7 hours/night). These findings can help students and dance professionals improve their performance and face pressures inherent in dance practice. Follow-up research should verify these findings in varied populations with objective sleep measures and observational data from multiple respondents.

Increasing diabetic patient engagement and self-reported medication adherence using a web-based multimedia program.

Science.gov (United States)

Elsabrout, Kerri

2018-05-01

Evidence-based, multimedia applications to supplement clinical care can improve patient engagement and clinical outcomes. Patients with diabetes with potentially devastating complication of foot ulcers present a substantial opportunity to improve engagement. This project examines how providing an online, multimedia self-management program affects patient engagement and self-reported medication adherence scores within 4-6 weeks compared with preprogram scores. Participants included 14 adult, diabetic outpatients receiving care at a Wound Care Center in suburban New York. Participants watched a Type 2 diabetes Emmi educational module on an electronic tablet during a routine wound treatment visit. Self-reported medication adherence was measured immediately before and at 4-6 weeks after the educational intervention. Patient engagement was measured immediately before, immediately after, and at 4-6 weeks postintervention. Self-reported medication adherence results demonstrated a modest increase at the delayed postintervention time. In addition, there was a large increase in engagement scores at the delayed postintervention time. The direction of change for both measures was consistent with the intervention being effective. Incorporating this type of novel, multimedia patient education resource may provide opportunities to enhance diabetes care.

Self-reported emotion regulation in adults with Tourette's syndrome.

Science.gov (United States)

Drury, Helena; Wilkinson, Verity; Robertson, Mary M; Channon, Shelley

2016-11-30

Recent work has reported mild impairments in social and emotional processing in Tourette's syndrome (TS), but deliberate attempts to use specific emotion regulation strategies have not been investigated previously. In the present study, adult participants with TS and no comorbidities (TS-alone) were compared to healthy control participants on several self-report measures assessing habitual use of reappraisal and suppression emotion regulation strategies. There were no group differences on measures of reappraisal, but the TS-alone group reported using suppression more frequently than the control group and this was true across a range of negative emotions. The groups did not differ on symptomatology scores of anxiety or depression, although more frequent use of suppression was associated with higher depressive symptomatology for the TS-alone group only. Further work is needed to examine potential factors that may influence emotion regulation in TS, including increased emotional reactivity or expertise in applying strategies to suppress tic symptoms. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Differences in depression and self-esteem reported by learning disabled and behavior disordered middle school students.

Science.gov (United States)

Stanley, P D; Dai, Y; Nolan, R F

1997-04-01

Although generalizations from research are helpful in guiding problem identification and interventions in a school setting, characteristics of specific groups must not be overlooked if all students are to be served effectively. Differences in the areas of self-reported self-esteem and depression are frequently pertinent to decisions and recommendations educational professionals are called on to make. The current study examined differences in the level of self-reported self-esteem and depression between learning disabled and behavior disordered middle school students. Sixty-one participants completed the Coopersmith Self-Esteem Inventory (CSEI) and the Children's Depression Inventory (CDI). Similarities and differences between learning disabled and behavior disordered students were identified.

The First Year of the AEVD Primary Cutaneous Lymphoma Registry.

Science.gov (United States)

Peñate, Y; Servitje, O; Machan, S; Fernández-de-Misa, R; Estrach, M T; Acebo, E; Mitxelena, J; Ramón, M D; Flórez, A; Blanes, M; Morillo, M; Medina, S; Bassas, J; Zayas, A; Espinosa, P; Pérez, A; Gónzalez-Romero, N; Domínguez, J D; Muniesa, C; López Robles, J; Combalia, A; Yanguas, I; Suh, H; Polo-Rodríguez, I; Bielsa, I; Mateu, A; Ferrer, B; Descalzo, M A; García-Doval, I; Ortiz-Romero, P L

2018-04-18

Primary cutaneous lymphomas are uncommon. This article describes the Primary Cutaneous Lymphoma Registry of the Spanish Academy of Dermatology and Venereology (AEDV) and reports on the results from the first year. Disease registry for patients with primary cutaneous lymphoma. The participating hospitals prospectively recorded data on diagnosis, treatment, tests, and disease stage for all patients with primary cutaneous lymphoma. A descriptive analysis was performed. In December 2017, the registry contained data on 639 patients (60% male) from 16 university hospitals. The most common diagnoses, in order of frequency, were mycosis fungoides/Sézary syndrome (MF/SS) (348 cases, 55%), primary cutaneous B-cell lymphoma (CBCL) (184 cases, 29%), primary cutaneous CD30 + T-cell lymphoproliferative disorder (CD30 + CLPD) (70 cases, 11%), and other types of T-cell lymphoma (37 cases, 5%). In total, 105 (16.5%) of the cases recorded were incident cases. The most common diagnosis in the MF/SS group was classic MF (77.3%). Half of the patients with MF had stage IA disease when diagnosed, and the majority were either in partial remission (32.5%) or had stable disease (33.1%). The most widely used treatments were topical corticosteroids (90.8%) and phototherapy. The most common form of primary CBCL was marginal zone lymphoma (50%). Almost all of the patients had cutaneous involvement only and nearly half had stage T1a disease. Most (76.1%) were in complete remission. The main treatments were surgery (55.4%) and radiotherapy (41.9%). The most common diagnosis in patients with CD30 + CLPD was lymphomatoid papulosis (68.8%). Most of the patients (31.4%) had stage T3b disease and half were in complete remission. The most common treatments were topical corticosteroids (68.8%) and systemic chemotherapy (32.9%). The characteristics of patients with primary cutaneous lymphoma in Spain do not differ from those described in other series in the literature. The registry will facilitate

United States Transuranium and Uranium Registries. Annual Report, October 1, 1993--September 30, 1994

Energy Technology Data Exchange (ETDEWEB)

Kathren, R.L.; Harwick, L.A. [comps.] [eds.

1995-08-01

This report summarizes the salient activities and progress of the United States Transuranium. and Uranium Registries for the period October 1, 1993 through September 30, 1994, along with details of specific programs areas including the National Human Radiobiology Tissue Repository (NHRTR) and tissue radiochemistry analysis project. Responsibility for tissue radioanalysis was transferred from Los Alamos National Laboratory to Washington State University in February 1994. The University of Washington was selected as the Quality Assurance/Quality Control laboratory and a three way intercomparison with them and LANL has been initiated. The results of the initial alpha spectrometry intercomparison showed excellent agreement among the laboratories and are documented in full in the Appendices to the report. The NHRTR serves as the initial point of receipt for samples received from participants in the USTUR program. Samples are weighed, divided, and reweighed, and a portion retained by the NHRTR as backup or for use in other studies. Tissue specimens retained in the NHRTR are maintained frozen at -70 C and include not only those from USTUR registrants but also those from the radium dial painter and thorium worker studies formerly conducted by Argonne National Laboratory. In addition, there are fixed tissues and a large collection of histopathology slides from all the studies, plus about 20,000 individual solutions derived from donated tissues. These tissues and tissue related materials are made available to other investigators for legitimate research purposes. Ratios of the concentration of actinides in various tissues have been used to evaluate the biokinetics, and retention half times of plutonium and americium. Retention half times for plutonium in various soft tissues range from 10-20 y except for the testes for which a retention half time of 58 y was observed. For americium, the retention half time in various soft tissues studied was 2.2-3.5 y.

United States Transuranium and Uranium Registries. Annual Report, October 1, 1993--September 30, 1994

International Nuclear Information System (INIS)

Kathren, R.L.; Harwick, L.A.

1995-01-01

This report summarizes the salient activities and progress of the United States Transuranium. and Uranium Registries for the period October 1, 1993 through September 30, 1994, along with details of specific programs areas including the National Human Radiobiology Tissue Repository (NHRTR) and tissue radiochemistry analysis project. Responsibility for tissue radioanalysis was transferred from Los Alamos National Laboratory to Washington State University in February 1994. The University of Washington was selected as the Quality Assurance/Quality Control laboratory and a three way intercomparison with them and LANL has been initiated. The results of the initial alpha spectrometry intercomparison showed excellent agreement among the laboratories and are documented in full in the Appendices to the report. The NHRTR serves as the initial point of receipt for samples received from participants in the USTUR program. Samples are weighed, divided, and reweighed, and a portion retained by the NHRTR as backup or for use in other studies. Tissue specimens retained in the NHRTR are maintained frozen at -70 C and include not only those from USTUR registrants but also those from the radium dial painter and thorium worker studies formerly conducted by Argonne National Laboratory. In addition, there are fixed tissues and a large collection of histopathology slides from all the studies, plus about 20,000 individual solutions derived from donated tissues. These tissues and tissue related materials are made available to other investigators for legitimate research purposes. Ratios of the concentration of actinides in various tissues have been used to evaluate the biokinetics, and retention half times of plutonium and americium. Retention half times for plutonium in various soft tissues range from 10-20 y except for the testes for which a retention half time of 58 y was observed. For americium, the retention half time in various soft tissues studied was 2.2-3.5 y

Comparison of Self-Report Versus Sensor-Based Methods for Measuring the Amount of Upper Limb Activity Outside the Clinic.

Science.gov (United States)

Waddell, Kimberly J; Lang, Catherine E

2018-03-10

To compare self-reported with sensor-measured upper limb (UL) performance in daily life for individuals with chronic (≥6mo) UL paresis poststroke. Secondary analysis of participants enrolled in a phase II randomized, parallel, dose-response UL movement trial. This analysis compared the accuracy and consistency between self-reported UL performance and sensor-measured UL performance at baseline and immediately post an 8-week intensive UL task-specific intervention. Outpatient rehabilitation. Community-dwelling individuals with chronic (≥6mo) UL paresis poststroke (N=64). Not applicable. Motor Activity Log amount of use scale and the sensor-derived use ratio from wrist-worn accelerometers. There was a high degree of variability between self-reported UL performance and the sensor-derived use ratio. Using sensor-based values as a reference, 3 distinct categories were identified: accurate reporters (reporting difference ±0.1), overreporters (difference >0.1), and underreporters (difference sensor-based assessment. Participants did not consistently or accurately self-report UL performance when compared with the sensor-derived use ratio. Although self-report and sensor-based assessments are moderately associated and appear similar conceptually, these results suggest self-reported UL performance is often not consistent with sensor-measured performance and the measures cannot be used interchangeably. Copyright © 2018 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.

Reports of past alcohol and drug use following participation in a motivation enhancing intervention: Implications for clinical assessment and program evaluation

Directory of Open Access Journals (Sweden)

Rosengren David B

2012-05-01

Full Text Available Abstract Background There is significant interest in the value of motivational approaches that enhance participant readiness to change, but less is known about clients’ self-reports of problematic behavior when participating in such interventions. Methods We examined whether participants in a motivationally-based intervention for DUI offenders changed their reports of substance use at postintervention (when reporting on the same 30 days that they reported on at preintervention. Specifically, Study 1 (N = 8,387 tested whether participants in PRIME For Life (PFL changed their reports about baseline substance levels when asked at postintervention versus at preintervention. Study 2 (N = 192 compared changes in self-reported baseline drinking between PFL and intervention as usual (IAU participants. Results Many participants in Study 1 did not change their reports about how much they used substances during the 30-day period before baseline. Among those who did, the most common change was an increase in reported amounts of baseline drug use, and typical and peak alcohol use. This sample also showed changes in reports of their baseline pattern of high-risk-use (consistent versus occasional. At postintervention, participants who were younger, single, or endorsing more indicators of alcohol dependence were more likely to later report greater frequency of baseline drug use, and greater peak and typical number of baseline drinks. Gender, education, and race were also associated with reporting inconsistency on some behaviors. In Study 2, PFL participants showed greater increases in reports of peak alcohol use compared to IAU, but both conditions showed similar increases for drugs and typical alcohol use. Conclusions In both research and clinical settings, a segment of participants may initially report less substance use than they do when asked later about the same baseline period. These preliminary findings suggest clinicians and researchers may

Sports participation with arachnoid cysts.

Science.gov (United States)

Strahle, Jennifer; Selzer, Béla J; Geh, Ndi; Srinivasan, Dushyanth; Strahle, MaryKathryn; Martinez-Sosa, Meleine; Muraszko, Karin M; Garton, Hugh J L; Maher, Cormac O

2016-04-01

OBJECT There is currently no consensus on the safety of sports participation for patients with an intracranial arachnoid cyst (AC). The authors' goal was to define the risk of sports participation for children with this imaging finding. METHODS A survey was prospectively administered to 185 patients with ACs during a 46-month period at a single institution. Cyst size and location, treatment, sports participation, and any injuries were recorded. Eighty patients completed at least 1 subsequent survey following their initial entry into the registry, and these patients were included in a prospective registry with a mean prospective follow-up interval of 15.9 ± 8.8 months. RESULTS A total 112 patients with ACs participated in 261 sports for a cumulative duration of 4410 months or 1470 seasons. Of these, 94 patients participated in 190 contact sports for a cumulative duration of 2818 months or 939 seasons. There were no serious or catastrophic neurological injuries. Two patients presented with symptomatic subdural hygromas following minor sports injuries. In the prospective cohort, there were no neurological injuries CONCLUSIONS Permanent or catastrophic neurological injuries are very unusual in AC patients who participate in athletic activities. In most cases, sports participation by these patients is safe.

Ethical aspects of registry-based research in the Nordic countries

Directory of Open Access Journals (Sweden)

Ludvigsson JF

2015-11-01

Full Text Available Jonas F Ludvigsson,1,2 Siri E Håberg,3 Gun Peggy Knudsen,3 Pierre Lafolie,4,5 Helga Zoega,6 Catharina Sarkkola,7 Stephanie von Kraemer,7 Elisabete Weiderpass,1,7–10 Mette Nørgaard11 1Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, 2Department of Pediatrics, Örebro University Hospital, Örebro, Sweden; 3Norwegian Institute of Public Health, Oslo, Norway; 4Department of Medicine, Clinical Pharmacology Unit, 5The Stockholm Regional Ethical Review Board, Karolinska Institutet, Stockholm, Sweden; 6Center of Public Health Sciences, Faculty of Medicine, University of Iceland, Reykjavík, Iceland; 7Genetic Epidemiology Group, Folkhälsan Research Center, Helsinki, Finland; 8Department of Community Medicine, Faculty of Health Sciences, University of Tromsø, 9The Arctic University of Norway, Tromsø, 10Department of Research, Cancer Registry of Norway, Oslo, Norway; 11Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark Abstract: National health care registries in the Nordic countries share many attributes, but different legal and ethical frameworks represent a challenge to promoting effective joint research. Internationally, there is a lack of knowledge about how ethical matters are considered in Nordic registry-based research, and a lack of knowledge about how Nordic ethics committees operate and what is needed to obtain an approval. In this paper, we review ethical aspects of registry-based research, the legal framework, the role of ethics review boards in the Nordic countries, and the structure of the ethics application. We discuss the role of informed consent in registry-based research and how to safeguard the integrity of study participants, including vulnerable subjects and children. Our review also provides information on the different government agencies that contribute registry-based data, and a list of the major health registries in Denmark, Finland, Iceland, Norway, and

Comparison between self-report and hair analysis of illicit drug use in a community sample of middle-age men

OpenAIRE

Ledgerwood, David M.; Goldberger, Bruce A.; Risk, Nathan K.; Lewis, Collins E.; Price, Rumi Kato

2008-01-01

Discrepancies between biological assays and self-report of illicit drug use could undermine epidemiological research findings. Two objectives of the present study are to examine the degree of agreement between self-reported illicit drug use and hair analysis in a community sample of middle-aged men, and to identify factors that may predict discrepancies between self-report and hair testing. Male participants followed since 1972 were interviewed about substance use, and hair samples were analy...

Representativeness of two sampling procedures for an internet intervention targeting cancer-related distress: a comparison of convenience and registry samples

OpenAIRE

Owen, Jason E.; Bantum, Erin O'Carroll; Criswell, Kevin; Bazzo, Julie; Gorlick, Amanda; Stanton, Annette L.

2013-01-01

Internet interventions often rely on convenience sampling, yet convenience samples may differ in important ways from systematic recruitment approaches. The purpose of this study was to evaluate potential demographic, medical, and psychosocial differences between Internet-recruited and registry-recruited cancer survivors in an Internet-based intervention. Participants were recruited from a cancer registry (n = 80) and via broad Internet outreach efforts (n = 160). Participants completed a set ...

CKD.QLD: establishment of a chronic kidney disease [CKD] registry in Queensland, Australia.

Science.gov (United States)

Venuthurupalli, Sree K; Hoy, Wendy E; Healy, Helen G; Cameron, Anne; Fassett, Robert G

2017-06-07

Chronic kidney disease [CKD] is recognised as a global public health problem. Until recently, the majority of information informing on CKD has been generated from renal registries reporting on patients with end-stage kidney disease [ESKD] and on renal replacement therapy [RRT]. There has been a paucity of information on pre-dialysis CKD cohorts, and many issues related to these poorly described populations are unresolved. To this end, international organizations have called for CKD surveillance systems across all countries. In Australia, we have responded by developing the Chronic Kidney Disease in Queensland [CKD.QLD] with three main platforms consisting of CKD Registry, clinical trials and development of biobank. This registry which is the core component of CKD surveillance was conceptualized specifically for the pre-dialysis population in the public health system in Queensland, Australia. Recruitment started in May 2011, and to date the Registry has evolved as one of the largest CKD cohorts in the world with recruitment close to 7000 patients. The Registry has had many outcomes, including being the nidus for Australia's first National Health and Medical Research Council [NHMRC] CKD Centre of Research Excellence [CKD.CRE]. The Registry, with its linkage to Queensland Health datasets, is reporting, and is expected to continue generating, significant information on multiple aspects of CKD, its trajectory, management and patient outcomes. Intent of the CKD.CRE is to facilitate an expanded Registry network that has representation from health services, both public and private, across Australia.