Information perception, wishes, and satisfaction in ambulatory cancer patients under active treatment: patient-reported outcomes with QLQ-INFO25

Science.gov (United States)

Pinto, Ana Catarina; Ferreira-Santos, Fernando; Lago, Lissandra Dal; de Azambuja, Evandro; Pimentel, Francisco Luís; Piccart-Gebhart, Martine; Razavi, Darius

2014-01-01

Background Information is vital to cancer patients. Physician–patient communication in oncology presents specific challenges. The aim of this study was to evaluate self-reported information of cancer patients in ambulatory care at a comprehensive cancer centre and examine its possible association with patients’ demographic and clinical characteristics. Patients and methods This study included adult patients with solid tumours undergoing chemotherapy at the Institute Jules Bordet’s Day Hospital over a ten-day period. EORTC QLQ-C30 and QLQ-INFO25 questionnaires were administered. Demographic and clinical data were collected. Descriptive and inferential statistics were used. Results 101 (99%) fully completed the questionnaires. They were mostly Belgian (74.3%), female (78.2%), with a mean age of 56.9 ± 12.8 years. The most frequent tumour was breast cancer (58.4%). Patients were well-informed about the disease and treatments, but presented unmet information domains. The Jules Bordet patients desired more information on treatment side effects, long-term outcome, nutrition, and recurrence symptoms. Patients on clinical trials reported having received less information about their disease and less written information than patients outside clinical trials. Higher information levels were associated with higher quality of life (QoL) scores and higher patient satisfaction. Conclusion Patients were satisfied with the information they received and this correlated with higher QoL, but they still expressed unmet information wishes. Additional studies are required to investigate the quality of the information received by patients enrolled in clinical trials. PMID:24834120

Patient versus informant reported quality of life in the earliest phases of Alzheimer's disease

DEFF Research Database (Denmark)

Vogel, Asmus; Mortensen, Erik Lykke; Hasselbalch, Steen G

2006-01-01

The study investigated if patient and informant reported Quality of Life (QoL) differed in early Alzheimer's disease (AD). In addition, we examined whether anosognosia had an impact on the agreement between patient and informant ratings of QoL and whether anosognosia, dementia severity, depression...

Patient versus informant reported quality of life in the earliest phases of Alzheimer's disease

DEFF Research Database (Denmark)

Vogel, Asmus; Mortensen, Erik Lykke; Hasselbalch, Steen G

2006-01-01

The study investigated if patient and informant reported Quality of Life (QoL) differed in early Alzheimer's disease (AD). In addition, we examined whether anosognosia had an impact on the agreement between patient and informant ratings of QoL and whether anosognosia, dementia severity, depressio...

Patient representatives' views on patient information in clinical cancer trials

DEFF Research Database (Denmark)

Dellson, Pia; Nilbert, Mef; Carlsson, Christina

2016-01-01

of future simplified and more attractive informed consent forms. CONCLUSIONS: The emotional and cognitive responses to written patient information reported by patient representatives provides a basis for revised formats in future trials and add to the body of information that support use of plain language......BACKGROUND: Patient enrolment into clinical trials is based on oral information and informed consent, which includes an information sheet and a consent certificate. The written information should be complete, but at the same time risks being so complex that it may be questioned if a fully informed...... consent is possible to provide. We explored patient representatives' views and perceptions on the written trial information used in clinical cancer trials. METHODS: Written patient information leaflets used in four clinical trials for colorectal cancer were used for the study. The trials included phase I...

[Verbal patient information through nurses--a case of stroke patients].

Science.gov (United States)

Christmann, Elli; Holle, Regina; Schüssler, Dörte; Beier, Jutta; Dassen, Theo

2004-06-01

The article represents results of a theoretical work in the field of nursing education, with the topic: Verbal Patient Information through Nurses--A Case of Stroke Patients. The literature review and analysis show that there is a shortage in (stroke) patient information generally and a lack of successful concepts and strategies for the verbal (stroke) patient information through nurses in hospitals. The authors have developed a theoretical basis for health information as a nursing intervention and this represents a model of health information as a "communicational teach-and-learn process", which is of general application to all patients. The health information takes place as a separate nursing intervention within a non-public, face-to-face communication situation and in the steps-model of the nursing process. Health information is seen as a learning process for patients and nurses too. We consider learning as information production (constructivism) and information processing (cognitivism). Both processes are influenced by different factors and the illness-situation of patients, personality information content and the environment. For a successful health information output, it is necessary to take care of these aspects and this can be realized through a constructivational understanding of didactics. There is a need for an evaluation study to prove our concept of health information.

Progress and trends in patients' mindset on dental implants. I: level of information, sources of information and need for patient information.

Science.gov (United States)

Pommer, Bernhard; Zechner, Werner; Watzak, Georg; Ulm, Christian; Watzek, Georg; Tepper, Gabor

2011-02-01

Little is known about the level of information on implant dentistry in the public. A representative opinion poll on dental implants in the Austrian population was published in 2003 (Clinical Oral Implants Research 14:621-642). Seven years later, the poll was rerun to assess the up-to-date information level and evaluate recent progress and trends in patients' mindset on dental implants. One thousand adults--representative for the Austrian population--were presented with a total of 19 questionnaire items regarding the level and the sources of information about dental implants as well as the subjective and objective need for patient information. Compared with the survey of 2003, the subjective level of patient information about implant dentistry has significantly increased in the Austrian population. The patients' implant awareness rate was 79%. The objective level of general knowledge about dental implants was still all but satisfactory revealing unrealistic patient expectations. Three-quarters trusted their dentists for information about dental implants, while one-quarter turned to the media. The patients' wish for high-quality implant restorations was significantly higher than in 2003, yet the majority felt that only specialists should perform implant dentistry. This representative survey reveals that dentists are still the main source of patient information, but throws doubt on the quality of their public relations work. Dentists must improve communication strategies to provide their patients with comprehensible, legally tenable information on dental implants and bridge information gaps in the future. © 2010 John Wiley & Sons A/S.

Patients’ views on electronic patient information leaflets

Directory of Open Access Journals (Sweden)

Hammar T

2016-06-01

Full Text Available Background: Information in society and in health care is currently undergoing a transition from paper to digital formats, and the main source of information will probably be electronic in the future. Objective: To explore patients’ use and perceptions of the patient information leaflet included in the medication package, and their attitude towards a transition to an electronic version. Methods: The data was collected during October to November 2014 among individuals in South-Eastern Sweden, using a questionnaire (n=406, response rate 78% and interviews (n=15. Results: The questionnaire showed that the majority of the respondents (52% occasionally read the patient information leaflet, 37% always read it, and 11% never read it. Almost half of the patients (41% were positive towards reading the patient information leaflet electronically while 32% were hesitant and 26% neutral. A majority of the patients would request to get the patient information leaflet printed at the pharmacy if it was not included in the package. There were differences in attitude related to age and gender. The interviews showed that patients had mixed views on a transition to an electronic patient information leaflet. The patients perceived several positive aspects with an electronic patient information leaflet but were concerned about elderly patients. Conclusion: Although many were positive towards reading the patient information leaflet electronically, the majority prefer the patient information leaflet in paper form. Providing appropriate and useful eHealth services for patients to access the patient information leaflet electronically, along with education, could prepare patients for a transition to electronic patient information leaflet.

Patient representatives? views on patient information in clinical cancer trials

OpenAIRE

Dellson, Pia; Nilbert, Mef; Carlsson, Christina

2016-01-01

Background Patient enrolment into clinical trials is based on oral information and informed consent, which includes an information sheet and a consent certificate. The written information should be complete, but at the same time risks being so complex that it may be questioned if a fully informed consent is possible to provide. We explored patient representatives? views and perceptions on the written trial information used in clinical cancer trials. Methods Written patient information leaflet...

Information from the Internet and the doctor-patient relationship: the patient perspective – a qualitative study

Directory of Open Access Journals (Sweden)

Murray Elizabeth

2007-08-01

Full Text Available Abstract Background Both doctors and patients may perceive the Internet as a potential challenge to existing therapeutic relationships. Here we examine patients' views of the effect of the Internet on their relationship with doctors. Methods We ran 8 disease specific focus groups of between 2 and 8 respondents comprising adult patients with diabetes mellitus, ischaemic heart disease or hepatitis C. Results Data are presented on (i the perceived benefits and (ii limitations of the Internet in the context of the doctor-patient relationship, (iii views on sharing information with doctors, and (iv the potential of the Internet for the future. Information from the Internet was particularly valued in relation to experiential knowledge. Conclusion Despite evidence of increasing patient activism in seeking information and the potential to challenge the position of the doctor, the accounts here do not in any way suggest a desire to disrupt the existing balance of power, or roles, in the consultation. Patients appear to see the Internet as an additional resource to support existing and valued relationships with their doctors. Doctors therefore need not feel challenged or threatened when patients bring health information from the Internet to a consultation, rather they should see it as an attempt on the part of the patient to work with the doctor and respond positively.

Patients in need of medicine information.

Science.gov (United States)

Kazaryan, I; Sevikyan, A

2015-01-01

Reliable medicine information is important not only for physicians and pharmacists, but also for patients [6]. However, the results of studies implemented in some countries show that patients may have slightly different needs and preferences in using sources of information [1, 4, 5, 7]. The main objective of patient medicines information is assisting consumers to achieve safe and effective use of pharmaceuticals [2, 3]. To identify patients' needs in medicine information and sources they use to receive it. We interviewed 1059 people who had visited community pharmacies in 10 regions of Armenia and Yerevan. Previously developed questionnaire was used for interviewing patients. Statistical analysis was conducted using SPSS program. We found that consumers need medicine information. 68.9% of respondents often use pharmaceuticals only if necessary medicines information is available. The majority of them believe that it is important to have information about therapeutic indications of pharmaceuticals to be used (91.8%), their dosage and method of administration (91.1%), contraindications (82.4%), adverse reactions (81.9%) and the simultaneous use of multiple medicines (76.5%). 58.9% of consumers value information about medicine's price. More than 70% of patients often seek information from health professionals and use medicines package information leaflets (PIL), and more than 75% of respondents mainly trust the same sources. 71.5% of respondents read package leaflets, while 42.0% of consumers do this several times. Only 36.7% of respondents completely understand information in a leaflet. Patients in Armenia need medicine information. They prefer to receive information from sources they trust.Many patients do not understand the content of package information leaflets (PILs) due to barriers, which can be removed by introducing appropriate regulatory provisions for their content and readability.

The utilisation of virtual images in patient information giving sessions for prostate cancer patients prior to radiotherapy

International Nuclear Information System (INIS)

Stewart-Lord, A.; Brown, M.; Noor, S.; Cook, J.; Jallow, O.

2016-01-01

The aim of the study was to explore the prostate patients' perceptions of a Virtual Environment for Radiotherapy Training (VERT) as an information giving resource prior to radiotherapy delivery. A survey design was used to determine the level of knowledge of those patients who attended VERT for a pre-treatment talk and identify the benefits and limitations of using VERT as pre-treatment information giving resource. Participants were invited to attend a VERT patient information session four weeks prior to their planning CT scan, and then complete a questionnaire two weeks after start of radiotherapy treatment. A sample of n = 38 patients were recruited over a five month data collection period. Results showed that patient perceptions on the use of VERT as information giving tool prior to radiotherapy treatment were very positive. The sessions enable patients to understand the potential impact of treatment volumes if the internal organ shape and location differed from that originally planned, enabling them to comply with radiotherapy treatment instructions. Additional key findings have demonstrated excellent levels of communication associated with the use of VERT emphasising the need for future patient preparation strategies to consider the use of virtual technology. - Highlights: • VERT pre-treatment information sessions were very helpful to patients. • Patients had a better understanding of what to expect during treatment. • The importance of following bowel and bladder treatment preparation was made clear. • The session helped to reduced patient anxiety and stress associated with treatment.

Patient representatives' views on patient information in clinical cancer trials.

Science.gov (United States)

Dellson, Pia; Nilbert, Mef; Carlsson, Christina

2016-02-01

Patient enrolment into clinical trials is based on oral information and informed consent, which includes an information sheet and a consent certificate. The written information should be complete, but at the same time risks being so complex that it may be questioned if a fully informed consent is possible to provide. We explored patient representatives' views and perceptions on the written trial information used in clinical cancer trials. Written patient information leaflets used in four clinical trials for colorectal cancer were used for the study. The trials included phase I-III trials, randomized and non-randomized trials that evaluated chemotherapy/targeted therapy in the neoadjuvant, adjuvant and palliative settings. Data were collected through focus groups and were analysed using inductive content analysis. Two major themes emerged: emotional responses and cognitive responses. Subthemes related to the former included individual preferences and perceptions of effect, while subthemes related to the latter were comprehensibility and layout. Based on these observations the patient representatives provided suggestions for improvement, which largely included development of future simplified and more attractive informed consent forms. The emotional and cognitive responses to written patient information reported by patient representatives provides a basis for revised formats in future trials and add to the body of information that support use of plain language, structured text and illustrations to improve the informed consent process and thereby patient enrolment into clinical trials.

Flexible patient information search and retrieval framework: pilot implementation

Science.gov (United States)

Erdal, Selnur; Catalyurek, Umit V.; Saltz, Joel; Kamal, Jyoti; Gurcan, Metin N.

2007-03-01

Medical centers collect and store significant amount of valuable data pertaining to patients' visit in the form of medical free-text. In addition, standardized diagnosis codes (International Classification of Diseases, Ninth Revision, Clinical Modification: ICD9-CM) related to those dictated reports are usually available. In this work, we have created a framework where image searches could be initiated through a combination of free-text reports as well as ICD9 codes. This framework enables more comprehensive search on existing large sets of patient data in a systematic way. The free text search is enriched by computer-aided inclusion of additional search terms enhanced by a thesaurus. This combination of enriched search allows users to access to a larger set of relevant results from a patient-centric PACS in a simpler way. Therefore, such framework is of particular use in tasks such as gathering images for desired patient populations, building disease models, and so on. As the motivating application of our framework, we implemented a search engine. This search engine processed two years of patient data from the OSU Medical Center's Information Warehouse and identified lung nodule location information using a combination of UMLS Meta-Thesaurus enhanced text report searches along with ICD9 code searches on patients that have been discharged. Five different queries with various ICD9 codes involving lung cancer were carried out on 172552 cases. Each search was completed under a minute on average per ICD9 code and the inclusion of UMLS thesaurus increased the number of relevant cases by 45% on average.

The Effects of Viewing and Preferences for Online Cancer Information Among Patients' Loved Ones.

Science.gov (United States)

Lauckner, Carolyn

2016-01-01

Emotional and psychological distress is common among loved ones of cancer patients, who sometimes report more severe mental health issues than the patients themselves. In addition, many loved ones feel as though their information needs are not being met, which can lead them to seek out additional information online. This survey research examined the experiences of cancer patients' loved ones in viewing online content about the disease and the emotional outcomes of such browsing sessions. Participants (N = 191) were recruited from cancer- and caregiver-related nonprofits and online discussion boards. Results indicated that patients' loved ones were active users of online cancer Web sites. They primarily viewed and expressed a desire for information-based, rather than support-based, content. Many individuals desired in-depth treatment information, and those who viewed it had significantly more hope. Interestingly, multiple regression analysis revealed that viewing user-generated content was associated only with negative emotions, illustrating the potential dangers of social media spaces. Overall, this study shows the need for supporting patients' loved ones during their almost inevitable viewings of online cancer information. More research is needed in order to determine the best methods of mitigating potential negative effects of cancer Web sites and developing a useful online resource for this population.

The effect of giving detailed information about intravenous radiopharmaceutical administration on the anxiety level of patients who request more information

International Nuclear Information System (INIS)

Kaya, E.; Ciftci, I.; Demirel, R.; Gecici, O.; Cigerci, Y.

2010-01-01

Nuclear medicine procedures use radiopharmaceuticals, which produce radiation and potential adverse reactions, albeit at a low rate. It is the patient's ethical, legal, and medical right to be informed of the potential side effects of procedures applied to them. Our purpose was to determine the effect of providing information about intravenous radiopharmaceutical administration on the anxiety level of patients who request more information. This study was completed in two separate Nuclear Medicine Departments. The study included 620 (247 M, 373 F) patients who had been referred for myocardial perfusion, bone, dynamic renal, and thyroid scintigraphic examinations. The patients were divided into two groups according to whether they requested more information or not. Group 1 consisted of 388 patients who wanted to receive more information about the procedure, while Group 2 consisted of 232 patients who did not request additional information. The State-Trait Anxiety Inventory (STAI-S and STAI-T) was used to determine a patient's anxiety level. After simple information was given, state and trait anxiety levels were measured in both groups. We gave detailed information to the patients in Group 1 and then measured state anxiety again. Detailed information included an explanation of the radiopharmaceutical risk and probable side effects due to the scan procedure. There was no statistical difference between Groups 1 and 2 in STAI-T or STAI-S scores after simple information was given (p=0.741 and p=0.945, respectively). The mean value of STAI-S score was increased after the provision of detailed information and there was a statistically significant difference between after simple information STAI-S and after detailed information STAI-S (p<0.001). The STAI-S score was increased in 246 patients and decreased in 110 patients after detailed information, while there was no change in 32 patients. After detailed information, the greatest increase in STAI-S score was seen in the

Does age really matter? Recall of information presented to newly referred patients with cancer.

Science.gov (United States)

Jansen, Jesse; Butow, Phyllis N; van Weert, Julia C M; van Dulmen, Sandra; Devine, Rhonda J; Heeren, Thea J; Bensing, Jozien M; Tattersall, Martin H N

2008-11-20

To examine age- and age-related differences in recall of information provided during oncology consultations. Two hundred sixty patients with cancer diagnosed with heterogeneous cancers, seeing a medical or radiation oncologist for the first time, participated in the study. Patients completed questionnaires assessing information needs and anxiety. Recall of information provided was measured using a structured telephone interview in which patients were prompted to remember details physicians gave about diagnosis, prognosis, and treatment. Recall was checked against the actual communication in audio-recordings of the consultations. Recall decreased significantly with age, but only when total amount of information presented was taken into account. This indicates that if more information is discussed, older patients have more trouble remembering the information than younger ones. In addition, recall was selectively influenced by prognosis. First, patients with a poorer prognosis recalled less. Next, the more information was provided about prognosis, the less information patients recalled, regardless of their actual prognosis. Recall is not simply a function of patient age. Age only predicts recall when controlling for amount of information presented. Both prognosis and information about prognosis are better predictors of recall than age. These results provide important insights into intervention strategies to improve information recall in patients with cancer.

Patient information comes of age.

Science.gov (United States)

Murphy, Jeannette

2017-12-01

This virtual issue (VI) has been assembled to coincide with the 8th Annual Patient Information Conference 2013 organised by the UK Patient Information Forum (PiF). The conference theme 'Information and support - a service in its own right' is a response to policy documents and initiatives in both Scotland and England which signal the coming of age of patient/consumer information. The VI consists of a collection of open access articles and addresses the question 'What can health science librarians do to ensure that the public are able to find, appraise and use health information?' This material provides research evidence, and examples of the types of initiatives librarians have undertaken to make information a health and care service in its own right. Two recurrent messages are that health science librarians need to form partnerships with healthcare providers and they have a role to play in improving health literacy skills. © 2013 The authors. Health Information and Libraries Journal © 2013 Health Libraries Group.

17 CFR 229.1011 - (Item 1011) Additional information.

Science.gov (United States)

2010-04-01

... 17 Commodity and Securities Exchanges 2 2010-04-01 2010-04-01 false (Item 1011) Additional information. 229.1011 Section 229.1011 Commodity and Securities Exchanges SECURITIES AND EXCHANGE COMMISSION STANDARD INSTRUCTIONS FOR FILING FORMS UNDER SECURITIES ACT OF 1933, SECURITIES EXCHANGE ACT OF 1934 AND ENERGY POLICY AND CONSERVATION ACT OF 1975...

Assessing the information desire of patients with advanced cancer by providing information with a decision aid, which is evaluated in a randomized trial: a study protocol

NARCIS (Netherlands)

Oostendorp, L.J.M.; Ottevanger, P.B.; Graaf, W.T.A. van der; Stalmeier, P.F.M.

2011-01-01

BACKGROUND: There is a continuing debate on the desirability of informing patients with cancer and thereby involving them in treatment decisions. On the one hand, information uptake may be hampered, and additional stress could be inflicted by involving these patients. On the other hand, even

Regional Longitudinal Myocardial Deformation Provides Incremental Prognostic Information in Patients with ST-Segment Elevation Myocardial Infarction

DEFF Research Database (Denmark)

Biering-Sorensen, Tor; Jensen, Jan Skov; Pedersen, Sune H

2016-01-01

deformation in comparison to GLS, conventional echocardiography and clinical information. Method In total 391 patients were admitted with ST-Segment elevation myocardial infarction (STEMI), treated with primary percutaneous coronary intervention and subsequently examined by echocardiography. All patients were...... information to clinical and conventional echocardiographic information (Harrell's c-statistics: 0.63 vs. 0.67, p = 0.032). In addition, impaired longitudinal deformation outside the culprit lesion perfusion region was significantly associated with an adverse outcome (p...). Conclusion Regional longitudinal myocardial deformation measures, regardless if determined by TDI or 2DSE, are superior prognosticators to GLS. In addition, impaired longitudinal deformation in the inferior myocardial segment provides prognostic information over and above clinical and conventional...

Cancer Patients' Informational Needs: Qualitative Content Analysis.

Science.gov (United States)

Heidari, Haydeh; Mardani-Hamooleh, Marjan

2016-12-01

Understanding the informational needs of cancer patients is a requirement to plan any educative care program for them. The aim of this study was to identify Iranian cancer patients' perceptions of informational needs. The study took a qualitative approach. Semi-structured interviews were held with 25 cancer patients in two teaching hospitals in Iran. Transcripts of the interviews underwent conventional content analysis, and categories were extracted. The results came under two main categories: disease-related informational needs and information needs related to daily life. Disease-related informational needs had two subcategories: obtaining information about the nature of disease and obtaining information about disease prognosis. Information needs related to daily life also had two subcategories: obtaining information about healthy lifestyle and obtaining information about regular activities of daily life. The findings provide deep understanding of cancer patients' informational needs in Iran.

Patient information on breast reconstruction in the era of the world wide web. A snapshot analysis of information available on youtube.com.

Science.gov (United States)

Tan, M L H; Kok, K; Ganesh, V; Thomas, S S

2014-02-01

Breast cancer patient's expectation and choice of reconstruction is increasing and patients often satisfy their information needs outside clinic time by searching the world wide web. The aim of our study was to analyse the quality of content and extent of information regarding breast reconstruction available on YouTube videos and whether this is an appropriate additional source of information for patients. A snapshot qualitative and quantitative analysis of the first 100 videos was performed after the term 'breast reconstruction' was input into the search window of the video sharing website www.youtube.com on the 1st of September 2011. Qualitative categorical analysis included patient, oncological and reconstruction factors. It was concluded that although videos uploaded onto YouTube do not provide comprehensive information, it is a useful resource that can be utilised in patient education provided comprehensive and validated videos are made available. Copyright © 2013 Elsevier Ltd. All rights reserved.

Informational needs of gastrointestinal oncology patients.

Science.gov (United States)

Papadakos, Janet; Urowitz, Sara; Olmstead, Craig; Jusko Friedman, Audrey; Zhu, Jason; Catton, Pamela

2015-12-01

In response to the dearth of consumer health information for patients with gastrointestinal cancers, this study examined the informational needs of these patients to build a plan for future resource development. Although studies have examined informational needs of some such cancers, no published literature has investigated the comprehensive informational needs across all sites of gastrointestinal cancer. A cross-sectional needs assessment comprising a self-administered questionnaire was conducted at an ambulatory gastrointestinal oncology clinic in Toronto, Canada. Patient informational needs were measured, including importance of information, amount desired and preferred mode of delivery. Informational needs were grouped into six domains: medical, practical, physical, emotional, social and spiritual. Eighty-two surveys were analysed. The majority of the respondents were male (53.8%), over the age of 50 (77.8%), and born outside of Canada (51.9%). While many did not speak English as a child (46.3%), and do not speak English at home (22.2%), nearly all indicated comfort with receiving health information in English (97.5%). The majority of respondents were college educated (79.3%) and married (73%). Multiple cancer types were reported; the most common being colorectal (39%), followed by pancreatic (12%) and cancers of the gallbladder or bile duct (12%). Overall, respondents placed highest importance on medical information (P < 0.001). Preferred education modalities were pamphlets, websites and one-on-one discussions with health-care professionals. This study highlights the principal informational needs of patients with gastrointestinal malignancies, along with preferred modality for information delivery. This information will guide the development of educational resources for future patients. © 2014 John Wiley & Sons Ltd.

Web-based information and support for patients with a newly diagnosed neuroendocrine tumor: a feasibility study.

Science.gov (United States)

Bouma, Grietje; de Hosson, Lotte D; van Woerkom, Claudia E; van Essen, Hennie; de Bock, Geertruida H; Admiraal, Jolien M; Reyners, Anna K L; Walenkamp, Annemiek M E

2017-07-01

Patients with a neuroendocrine tumor (NET) frequently experience physical and psychosocial complaints. Novel strategies to provide information to optimize supportive care in these patients are of interest. The aim of this study was to examine whether the use of a web-based system consisting of self-screening of problems and care needs, patient education, and self-referral to professional health care is feasible in NET patients and to evaluate their opinion on this. Newly diagnosed NET patients were randomized between standard care (n = 10) or intervention with additional access to the web-based system (n = 10) during 12 weeks. Patients completed questionnaires regarding received information, distress, quality of life (QoL), and empowerment. The intervention group completed a semi-structured interview to assess patients' opinion on the web-based system. The participation rate was 77% (20/26 invited patients) with no dropouts. The use of the web-based system had a negative effect on patients' perception and satisfaction of received information (range Cohen's d -0.88 to 0.13). Positive effects were found for distress (Cohen's d 0.75), global QoL (subscale European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30, Cohen's d 0.46), resolving problems with social functioning and finding information (subscales EORTC QLQ-GINET 21, Cohen's d 0.69, respectively, 1.04), and feeling informed (subscale empowerment questionnaire, Cohen's d 0.51). The interview indicated that the web-based system was of additional value to standard care. Use of this web-based system is feasible. Contradictory effects on informing and supporting NET patients were found and should be subject of further research. NCT01849523.

Perfusion magnetic resonance imaging provides additional information as compared to anatomical imaging for decision-making in vestibular schwannoma

International Nuclear Information System (INIS)

Kleijwegt, M.C.; Mey, A.G.L. van der; Wiggers-deBruine, F.T.; Malessy, M.J.A; Osch, M.J.P. van

2016-01-01

•DSC/ASL-MRI can be acquired in growing VS with sufficient image quality.•In most patients DSC and ASL techniques provide similar qualitative scores.•These techniques can be of importance in future decision-making. DSC/ASL-MRI can be acquired in growing VS with sufficient image quality. In most patients DSC and ASL techniques provide similar qualitative scores. These techniques can be of importance in future decision-making. The added value of perfusion MRI for decision-making in vestibular schwannoma (VS) patients is unknown. MRI offers two perfusion methods: the first employing contrast agent (dynamic susceptibility contrast (DSC)-MRI) that provides information on cerebral blood volume (CBV) and cerebral blood flow (CBF), the second by magnetic labeling of blood (arterial spin labeling (ASL)-MRI), providing CBF-images. The goal of the current study is to investigate whether DSC and ASL perfusion MRI provides complimentary information to current anatomical imaging in treatment selection process of VS. Nine patients with growing VS with extrameatal diameter >9 mm were included (>2 mm/year and 20% volume expansion/year) and one patient with 23 mm extrameatal VS without growth. DSC and ASL perfusion MRI were obtained on 3 T MRI. Perfusion in VS was scored as hyperintense, hypointense or isointense compared to the contralateral region. Seven patients showed hyperintense signal on DSC and ASL sequences. Three patients showed iso- or hypointense signal on at least one perfusion map (1 patient hypointense on both DSC-MRI and ASL; 1 patient isointense on DSC-CBF; 1 patient isointense on ASL). All patients showed enhancement on post-contrast T1 anatomical scan. Perfusion MR provides additional information compared to anatomical imaging for decision-making in VS

An information-motivation-behavioral skills (IMB) model-based intervention for CABG patients.

Science.gov (United States)

Zarani, Fariba; Besharat, Mohammad Ali; Sarami, Gholamreza; Sadeghian, Saeed

2012-12-01

In order to benefit from a coronary artery bypass graft (CABG) surgery, patients must adhere to medical recommendations and health advices. Despite the importance of adherence in CABG patients, adherence rates are disappointingly low. Despite the low adherence rates, very few articles regarding adherence-enhancing intervention among heart patients have been published. The goal of this study was to assess the effects of the Information-Motivation-Behavioral Skills (IMB) model-based intervention on the IMB model constructs among patients undergoing CABG and to evaluate the relationship of information, motivation, and behavioral skills with adherence. A total of 152 CABG patients were randomly assigned to either an intervention group or to a standard care control group. Participants completed pretest measures and were reassessed 1 month later. Findings showed mixed support for the effectiveness of the intervention. There was a significant effect of IMB intervention on information and motivation of patients, but no significant effect on behavioral skills. Furthermore, the results revealed that intervention constructs (information, motivation, and behavioral skills) were significantly related to patients' adherence. Findings provided initial evidence for the effectiveness of IMB-based interventions on the IMB constructs and supported the importance of these constructs to improve adherence; however, there are additional factors that need to be identified in order to improve behavioral skills more effectively.

38 CFR 61.15 - Obtaining additional information and awarding capital grants.

Science.gov (United States)

2010-07-01

... information and awarding capital grants. 61.15 Section 61.15 Pensions, Bonuses, and Veterans' Relief DEPARTMENT OF VETERANS AFFAIRS (CONTINUED) VA HOMELESS PROVIDERS GRANT AND PER DIEM PROGRAM § 61.15 Obtaining additional information and awarding capital grants. (a) Each applicant who has been conditionally selected...

Information-seeking Behavior and Information Needs in Patients With Amyotrophic Lateral Sclerosis: Analyzing an Online Patient Community.

Science.gov (United States)

Oh, Juyeon; Kim, Jung A

2017-07-01

A few studies have examined the specific informational needs of the population with amyotrophic lateral sclerosis. The aims of this study were to describe the information-seeking behavior and information needs of patients with amyotrophic lateral sclerosis and their families in Korea by analyzing messages from an online patient community. A total of 1047 messages from the question and answer forum of the "Lou Gehrig's Disease Network" (http://cafe.daum.net/alsfree) from January 2010 to September 2015 were collected. The word frequency, main questions, and asker of the messages were analyzed and coded. Terms such as "hospital," "mother," "father," "gastrostomy," and "ALS" were most frequently identified. The most commonly mentioned main topic was about disease-specific information, while the most frequent subcategory was symptoms or management of symptoms. Other prominent categories concerned information about treatment, rehabilitation, and the medical system. The people who wrote the questions were mostly the son/daughter of patients with amyotrophic lateral sclerosis. Patients with amyotrophic lateral sclerosis and their family members commonly obtained information by posting their inquiries online and have a variety of questions regarding amyotrophic lateral sclerosis in this study. The findings of this study can be used as a base of information for developing educational programs and resources for patients with amyotrophic lateral sclerosis and their families.

25 CFR 103.14 - Can BIA request additional information?

Science.gov (United States)

2010-04-01

... 25 Indians 1 2010-04-01 2010-04-01 false Can BIA request additional information? 103.14 Section 103.14 Indians BUREAU OF INDIAN AFFAIRS, DEPARTMENT OF THE INTERIOR FINANCIAL ACTIVITIES LOAN GUARANTY, INSURANCE, AND INTEREST SUBSIDY How a Lender Obtains a Loan Guaranty or Insurance Coverage § 103.14 Can BIA...

Expressed information needs of patients with osteoporosis and/or fragility fractures: a systematic review.

Science.gov (United States)

Raybould, Grace; Babatunde, Opeyemi; Evans, Amy L; Jordan, Joanne L; Paskins, Zoe

2018-05-08

This systematic review identified patients have unmet information needs about the nature of osteoporosis, medication, self-management and follow-up. Clinician knowledge and attitudes appear to be of key importance in determining whether these needs are met. Unmet information needs appear to have psychosocial consequences and result in poor treatment adherence. Patient education is an integral component of the management of osteoporosis, yet patients are dissatisfied with the information they receive and see this as an area of research priority. This study aimed to describe and summarise the specific expressed information needs of patients in previously published qualitative research. Using terms relating to osteoporosis, fragility fracture and information needs, seven databases were searched. Articles were screened using predefined inclusion and exclusion criteria. Full-text articles selected for inclusion underwent data extraction and quality appraisal. Findings were drawn together using narrative synthesis. The search identified 11,024 articles. Sixteen empirical studies were included in the review. Thematic analysis revealed three overarching themes relating to specific information needs, factors influencing whether information needs are met and the impact of unmet information needs. Specific information needs identified included the following: the nature of osteoporosis/fracture risk; medication; self-management and understanding the role of dual energy x-ray absorptiometry and follow-up. Perceived physician knowledge and attitudes, and the attitudes, beliefs and behaviours of patients were important factors in influencing whether information needs were met, in addition to contextual factors and the format of educational resources. Failure to elicit and address information needs appears to be associated with poor treatment adherence, deterioration of the doctor-patient relationship and important psychosocial consequences. This is the first study to describe the

Information technology for patient empowerment in healthcare

CERN Document Server

Grando, Maria Adela; Bates, David

2015-01-01

The authors explore novel information-based mechanisms that are changing the way patients are involved in their own health care. The book covers models, frameworks and technologies to improve patient-to-provider communication, patient interaction with information technologies, patient education and involvement in health care decision processes, and patient access, understanding and control over their clinical data.

Melanoma patients' disease-specific knowledge, information preference, and appreciation of educational YouTube videos for self-inspection.

Science.gov (United States)

Damude, S; Hoekstra-Weebers, J E H M; van Leeuwen, B L; Hoekstra, H J

2017-08-01

Informing and educating melanoma patients is important for early detection of a recurrence or second primary. This study aimed to investigate Dutch melanoma patients' disease-specific knowledge, and their opinions on information provision and the value of e-Health videos. All AJCC stage I-II melanoma patients in follow-up between March 2015 and March 2016 at a single melanoma center were invited to complete 19 online questions, addressing respondents' characteristics, knowledge on melanoma, and opinions on melanoma-specific information received and the educational YouTube videos. In total, 100 patients completed the survey (response = 52%); median age was 60 years and 51% were female. Breslow tumor thickness was unknown by 34% and incorrectly indicated by 19%, for presence of ulceration this was 33% and 11%, for mitosis 65% and 14%, and for AJCC stage 52% and 23%, respectively. Only 5% correctly reproduced all four tumor characteristics. Orally delivered information regarding warning signs, severity, treatment possibilities, and importance of self-inspection was clearest for patients, compared to information in the melanoma brochure. According to 77% of patients, YouTube videos regarding self-inspection of the skin and regional lymph nodes had additional value. Altogether, 63% preferred receiving information in multiple ways; 92% orally by their physician, 62% through videos, and 43% through brochures. Patients' melanoma-specific knowledge appears to be limited. There is an urgent need for further improvement of providing information and patient education. In addition to oral and written information, e-Health videos seem to be a convenient supplemental and easy accessible method for patient education. Copyright © 2017 Elsevier Ltd, BASO ~ The Association for Cancer Surgery, and the European Society of Surgical Oncology. All rights reserved.

Information Needs of Cancer Patients and Perception of Impact of the Disease, of Self-Efficacy, and Locus of Control.

Science.gov (United States)

Keinki, C; Seilacher, E; Ebel, M; Ruetters, D; Kessler, I; Stellamanns, J; Rudolph, I; Huebner, J

2016-09-01

The aim of our study was to investigate the relationship between information needs and cancer patients' perceptions of the impact of the disease, self-efficacy, and locus of control. Using a standardized questionnaire, we obtained data from patients who attended a series of lectures. The questionnaire included questions on their information needs, sources of information, satisfaction with information, and short questionnaires on self-efficacy, perception of the disease, and locus of control of reinforcement. Data was obtained from 185 patients. Our results showed that the sources of information that were most often used were physicians (84 %), print media (68 %), and the Internet (59 %); online fora (7.5 %), non-medical practitioners (9.7 %), and telephone-based counseling (8.6 %) were only used by a minority. Patients with a high perception of their own control over the disease more often used any source of information available to them and were more often interested in acquiring additional information. Higher self-efficacy was significantly associated with the need for information on all topics. Patients with a higher external locus of control significantly more often used sources of information and had significantly more need for additional information. By contrast, there were no associations with an internal locus of control. Neither external nor internal locus of control showed any associations with satisfaction with information. Information needs seem to be higher in patients with a high external locus of control and low self-efficacy. Physicians, other professionals, and institutions that provide information may take these relationships into consideration for tailoring their services to patients.

Do patients with a limited number of brain metastases need whole-brain radiotherapy in addition to radiosurgery?

International Nuclear Information System (INIS)

Rades, D.; Schild, S.E.

2012-01-01

Background: About 40% of patients with brain metastases have a very limited number of lesions and may be candidates for radiosurgery. Radiosurgery alone is superior to whole-brain radiotherapy (WBRT) alone for control of treated and new brain metastases. In patients with a good performance status, radiosurgery also resulted in better survival. However, the question is whether the results of radiosurgery alone can be further improved with additional WBRT. Methods: Information for this review was compiled by searching the PubMed and MEDLINE databases. Very important published meeting abstracts were also considered. Results: Based on both retrospective and prospective studies, the addition of WBRT to radiosurgery improved control of treated and new brain metastases but not survival. However, because a recurrence within the brain has a negative impact on neurocognitive function, it is important to achieve long-term control of brain metastases. Conclusion: The addition of WBRT provides significant benefits. Further randomized studies including adequate assessment of neurocognitive function and a follow-up period of at least 2 years are needed to help customize the treatment for individual patients. (orig.)

Tailored information for cancer patients on the Internet: effects of visual cues and language complexity on information recall and satisfaction.

NARCIS (Netherlands)

Weert, J.C.M. van; Noort, G. van; Bol, N.; Dijk, L. van; Tates, K.; Jansen, J.

2011-01-01

Objective: This study was designed to investigate the effects of visual cues and language complexity on satisfaction and information recall using a personalised website for lung cancer patients. In addition, age effects were investigated. Methods: An experiment using a 2 (complex vs. non-complex

Tailored information for cancer patients on the Internet: effects of visual cues and language complexity on information recall and satisfaction

NARCIS (Netherlands)

van Weert, J.C.M.; van Noort, G.; Bol, N.; van Dijk, L.; Tates, K.; Jansen, J.

2011-01-01

Objective This study was designed to investigate the effects of visual cues and language complexity on satisfaction and information recall using a personalised website for lung cancer patients. In addition, age effects were investigated. Methods An experiment using a 2 (complex vs. non-complex

Evaluation of the quality of patient information to support informed shared decision-making.

Science.gov (United States)

Godolphin, W; Towle, A; McKendry, R

2001-12-01

(a) To find out how much patient information material on display in family physicians' offices refers to management choices, and hence may be useful to support informed and shared decision-making (ISDM) by patients and (b) to evaluate the quality of print information materials exchanged during the consultation, i.e. brought in by patients or given out by family physicians. All print information available for patients and exchanged between physicians and patients was collected in a single complete day of the office practices of 21 family physicians. A published and validated instrument (DISCERN) was used to assess quality. Community office practices in the greater Vancouver area, British Columbia, Canada. The physicians were purposefully recruited by their association with the medical school Department of Family Practice, their interest in providing patients with print information and their representation of a range of practice types and location. The source of the pamphlets and these categories: available in the physicians' offices; exchanged between physician and patient; and produced with the explicit or apparent intent to support evidence-based patient choice. The quality of the print information to support ISDM, as measured by DISCERN and the ease of use and reliability of the DISCERN tool. Fewer than 50% of pamphlets available in these offices fulfilled our minimum criteria for ISDM (mentioned more than one management option). Offices varied widely in the proportion of pamphlets on display that supported ISDM and how particular the physician was in selecting materials. The DISCERN tool is quick, valid and reliable for the evaluation of patient information. The quality of patient information materials used in the consultation and available in these offices was below midpoint on the DISCERN score. Major deficiencies were with respect to the mention of choices, risks, effect of no treatment or uncertainty and reliability (source, evidence-base). Good quality

PA2 Satisfaction with information received: perceptions of the patient and the informal caregiver.

Science.gov (United States)

Dawber, R; Armour, K; Carter, C; Ferry, P; Meystre, C

2015-04-01

Provision of information to patients and families is a priority of palliative care. Lack of information on symptoms, treatment and disease progress adversely affects patients' and caregivers' abilities to self manage and participate in decision making and care. Qualitative reports of end of life care suggest caregivers seek more information than patients. Ignorance of this need may hamper health promotion strategies and limitation of patient and caregiver morbidity during end of life and bereavement processes. To compare satisfaction of dying patients with information given; to proxy satisfaction estimates on the patient's behalf. Prospective study comparing assessment of satisfaction with information received by nurse, informal caregiver and dying patient (>64 years) in hospital. Assessments made within 24 h, using patient and caregiver versions of the palliative outcome scale (POS). weighted kappa for agreement between proxy and patient. Informal caregivers overestimate dissatisfaction with level of information given compared to patients. Weighted kappa patient versus ICG 0.187 (slight agreement), n = 50. The disparity between patient and proxy information satisfaction reflects the complexity of participatory strategies to limit morbidity at the end of life. Proxy over- estimation of patient dissatisfaction with information received may reflect the caregivers own dissatisfaction. As death approaches, caregivers require more information than patients, their burden increases and they become the interpreter of patient symptoms. Ignorance may lead to overestimation of symptoms, early breakdown of social care, and unplanned admission, risking death other than in the patients preferred place. Meeting caregiver information needs may reduce caregiver burden and improve proxy assessments, reducing patient and caregiver morbidity. © 2015, 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.

Antecedent characteristics of online cancer information seeking among rural breast cancer patients: an application of the Cognitive-Social Health Information Processing (C-SHIP) model.

Science.gov (United States)

Shaw, Bret R; Dubenske, Lori L; Han, Jeong Yeob; Cofta-Woerpel, Ludmila; Bush, Nigel; Gustafson, David H; McTavish, Fiona

2008-06-01

Little research has examined the antecedent characteristics of patients most likely to seek online cancer information. This study employs the Cognitive-Social Health Information Processing (C-SHIP) model as a framework to understand what psychosocial characteristics precede online cancer-related information seeking among rural breast cancer patients who often have fewer health care providers and limited local support services. Examining 144 patients who were provided free computer hardware, Internet access, and training for how to use an interactive cancer communication system, pretest survey scores indicating patients' psychosocial status were correlated with specific online cancer information seeking behaviors. Each of the factors specified by the C-SHIP model had significant relationships with online cancer information seeking behaviors, with the strongest findings emerging for cancer-relevant encodings and self-construals, cancer-relevant beliefs and expectancies, and cancer-relevant self-regulatory competencies and skills. Specifically, patients with more negative appraisals in these domains were more likely to seek out online cancer information. Additionally, antecedent variables associated with the C-SHIP model had more frequent relationships with experiential information as compared with to didactic information. This study supports the applicability of the model to discern why people afflicted with cancer may seek online information to cope with their disease.

Patient-Reported Safety Information: A Renaissance of Pharmacovigilance?

Science.gov (United States)

Härmark, Linda; Raine, June; Leufkens, Hubert; Edwards, I Ralph; Moretti, Ugo; Sarinic, Viola Macolic; Kant, Agnes

2016-10-01

The role of patients as key contributors in pharmacovigilance was acknowledged in the new EU pharmacovigilance legislation. This contains several efforts to increase the involvement of the general public, including making patient adverse drug reaction (ADR) reporting systems mandatory. Three years have passed since the legislation was introduced and the key question is: does pharmacovigilance yet make optimal use of patient-reported safety information? Independent research has shown beyond doubt that patients make an important contribution to pharmacovigilance signal detection. Patient reports provide first-hand information about the suspected ADR and the circumstances under which it occurred, including medication errors, quality failures, and 'near misses'. Patient-reported safety information leads to a better understanding of the patient's experiences of the ADR. Patients are better at explaining the nature, personal significance and consequences of ADRs than healthcare professionals' reports on similar associations and they give more detailed information regarding quality of life including psychological effects and effects on everyday tasks. Current methods used in pharmacovigilance need to optimise use of the information reported from patients. To make the most of information from patients, the systems we use for collecting, coding and recording patient-reported information and the methodologies applied for signal detection and assessment need to be further developed, such as a patient-specific form, development of a severity grading and evolution of the database structure and the signal detection methods applied. It is time for a renaissance of pharmacovigilance.

Is this a reflux patient or is it a patient with functional dyspepsia with additional reflux symptoms?

DEFF Research Database (Denmark)

Funch-Jensen, Peter

1995-01-01

Patients with pyrosis or regurgitation as the dominating symptoms have gastro-oesophageal reflux disease (GORD). However, patients with more atypical symptoms may also suffer from it. The disease is usually chronic and patients who have additional oesophagitis are at risk of developing complicati......Patients with pyrosis or regurgitation as the dominating symptoms have gastro-oesophageal reflux disease (GORD). However, patients with more atypical symptoms may also suffer from it. The disease is usually chronic and patients who have additional oesophagitis are at risk of developing...

Internet health information in the patient-provider dialogue.

Science.gov (United States)

Hong, Traci

2008-10-01

A patient discussing Internet health information with a health care provider (referred to as "patient-provider communication about Internet health information") can contribute positively to health outcomes. Although research has found that once Internet access is achieved, there are no ethnic differences in Internet health information seeking, it is unclear if there are ethnic differences in patient-provider communication about Internet health information. To help fill this gap in the literature, the National Cancer Institute's Health Information National Trends Survey 2005 was analyzed with Stata 9. Two sets of logistic regression analyses were conducted, one for a subsample of Internet users (n = 3,244) and one for a subsample of Internet users who are first-generation immigrants (n = 563). The dependent variable was patient-provider communication about Internet health information, which assessed whether survey participants had discussed online health information with a health care provider. The predictor variables included trust of health care provider, trust of online health information, Internet use, health care coverage, frequency of visits to health care provider, health status, and demographics. Among all Internet users, Whites had higher levels of patient-provider communication about Internet health information than Blacks and Asians. Similarly, among Internet users who are immigrants, Whites had higher levels of patient-provider communication about Internet health information than Blacks and Asians. While the digital divide is narrowing in terms of Internet access, racial differences in patient-provider communication about Internet health information may undermine the potential benefits of the information age.

The patient's opinion of informed consent

International Nuclear Information System (INIS)

Pinto, I.; Paul, L.; Chimeno, P.; Fernandez, J. L.; Vigil, D.

1999-01-01

To evaluate the quality of the information provided by informed consent forms for angiography and interventional radiology on the basis of the patients opinion. A descriptive study was performed based on an anonymous survey distributed among patients who were to undergo angiography and interventional radiology, and had previously been informed and provided with the corresponding informed consent form. A descriptive and analytical statistical study was carried out to compare the responses to the questions concerning different factors (Mann-Whitney U test). Of the 182 surveys completed 75.3% corresponded to diagnostic procedures and the remaining 24.7% to therapeutic procedures. When the responses to closed-ended questions were analyzed, 90.1% of respondents considered the amount of information provided by the document to be sufficient 75.3% declared that they found the form easy to comprehend and 34.1% responded that reading it had calmed their nerves. Statistically significant differences were observed, depending on whether the form corresponded to diagnostic or therapeutic procedures, concerning the questions related to comprehension of the document and to the feeling upon reading it, with those used for diagnostic procedures obtaining better scores. There was a statistically significant difference between the responses of the patients to the question concerning their feeling upon reading the document and the responses of family members, with the patients responding more favorably than their relatives. The consent forms prepared for angiography and interventional radiology procedures are acceptable to the patients concerned with respect to both the quantity and the quality of the information. (Author) 22 refs

Evaluation of the quality of patient information to support informed shared decision‐making

Science.gov (United States)

Godolphin, William; Towle, Angela; McKendry, Rachael

2008-01-01

Objectives (a) To find out how much patient information material on display in family physicians’ offices refers to management choices, and hence may be useful to support informed and shared decision‐making (ISDM) by patients and (b) to evaluate the quality of print information materials exchanged during the consultation, i.e. brought in by patients or given out by family physicians. Design All print information available for patients and exchanged between physicians and patients was collected in a single complete day of the office practices of 21 family physicians. A published and validated instrument (DISCERN) was used to assess quality. Setting and participants Community office practices in the greater Vancouver area, British Columbia, Canada. The physicians were purposefully recruited by their association with the medical school Department of Family Practice, their interest in providing patients with print information and their representation of a range of practice types and location. Main variables studied The source of the pamphlets and these categories: available in the physicians’ offices; exchanged between physician and patient; and produced with the explicit or apparent intent to support evidence‐based patient choice. Main outcome measures The quality of the print information to support ISDM, as measured by DISCERN and the ease of use and reliability of the DISCERN tool. Results and conclusions Fewer than 50% of pamphlets available in these offices fulfilled our minimum criteria for ISDM (mentioned more than one management option). Offices varied widely in the proportion of pamphlets on display that supported ISDM and how particular the physician was in selecting materials. The DISCERN tool is quick, valid and reliable for the evaluation of patient information. The quality of patient information materials used in the consultation and available in these offices was below midpoint on the DISCERN score. Major deficiencies were with

Core information sets for informed consent to surgical interventions: baseline information of importance to patients and clinicians.

Science.gov (United States)

Main, Barry G; McNair, Angus G K; Huxtable, Richard; Donovan, Jenny L; Thomas, Steven J; Kinnersley, Paul; Blazeby, Jane M

2017-04-26

Consent remains a crucial, yet challenging, cornerstone of clinical practice. The ethical, legal and professional understandings of this construct have evolved away from a doctor-centred act to a patient-centred process that encompasses the patient's values, beliefs and goals. This alignment of consent with the philosophy of shared decision-making was affirmed in a recent high-profile Supreme Court ruling in England. The communication of information is central to this model of health care delivery but it can be difficult for doctors to gauge the information needs of the individual patient. The aim of this paper is to describe 'core information sets' which are defined as a minimum set of consensus-derived information about a given procedure to be discussed with all patients. Importantly, they are intended to catalyse discussion of subjective importance to individuals. The model described in this paper applies health services research and Delphi consensus-building methods to an idea orginally proposed 30 years ago. The hypothesis is that, first, large amounts of potentially-important information are distilled down to discrete information domains. These are then, secondly, rated by key stakeholders in multiple iterations, so that core information of agreed importance can be defined. We argue that this scientific approach is key to identifying information important to all stakeholders, which may otherwise be communicated poorly or omitted from discussions entirely. Our methods apply systematic review, qualitative, survey and consensus-building techniques to define this 'core information'. We propose that such information addresses the 'reasonable patient' standard for information disclosure but, more importantly, can serve as a spring board for high-value discussion of importance to the individual patient. The application of established research methods can define information of core importance to informed consent. Further work will establish how best to incorporate

Perceptions of Received Information, Social Support, and Coping in Patients with Pulmonary Arterial Hypertension or Chronic Thromboembolic Pulmonary Hypertension

Directory of Open Access Journals (Sweden)

Bodil Ivarsson

2014-01-01

Full Text Available Patients with a life-limiting diagnosis of pulmonary arterial hypertension (PAH or chronic thromboembolic pulmonary hypertension (CTEPH need disease-specific information, ability to cope, and functioning social networks. This cohort study investigated the experiences of PAH and CTEPH patients who received information about their diagnosis, treatment, and management, in addition to coping and social support. Sixty-eight adult patients (mean ∓ SD, age 67 ∓ 14; 66% women were included. A total of 54% of the patients wanted more information. Patients received information mostly in areas concerning medical test procedures, the diagnosis, disease severity, possible disease causes, and how to manage their disease. Coping ability was significantly better in patients who were satisfied with the received information (P= 0.0045. The information given to PAH or CTEPH patients and their communication with healthcare professionals can be greatly improved. Gaps in information and misunderstandings can be avoided by working in cooperation with the patients, their relatives, and within the PAH team.

Information Needs of Hepato-Pancreato-Biliary Surgical Oncology Patients.

Science.gov (United States)

Gillespie, Jacqueline; Kacikanis, Anna; Nyhof-Young, Joyce; Gallinger, Steven; Ruthig, Elke

2017-09-01

A marked knowledge gap exists concerning the information needs of hepato-pancreato-biliary (HPB) surgical oncology patients. We investigated the comprehensive information needs of this patient population, including the type and amount of information desired, as well as the preferred method of receiving information. A questionnaire was administered to patients being treated surgically for cancers of the liver, pancreas, gallbladder, or bile ducts at Toronto General Hospital, part of the University Health Network, in Toronto, Canada. The questionnaire examined patients' information needs across six domains of information: medical, practical, physical, emotional, social, and spiritual. Among 36 respondents, the importance of information and amount of information desired differed significantly by domain (both p < 0.001). This group of patients rated information in the medical and physical domains as most important, though they also desired specific items of information from the emotional, practical, and social domains. Patients' overwhelming preference was to receive information via a one-on-one consultation with a healthcare provider. It is important for healthcare providers working with HPB surgical oncology patients to be comprehensive when providing information related to patients' cancer diagnosis, prognosis, associated symptoms, and side effects of treatment. Certain emotional, practical, and social issues (e.g., fears of cancer recurrence, drug coverage options, relationship changes) should be addressed as well. Face-to-face interactions should be the primary mode of delivering information to patients. Our findings are being used to guide the training of healthcare providers and the development of educational resources specific to HPB surgical oncology patients.

The effects of additional care by a pulmonary nurse for asthma and COPD patients at a respiratory outpatient clinic: results from a double blind, randomized clinical trial

NARCIS (Netherlands)

Rootmensen, Geert N.; van Keimpema, Anton R. J.; Looysen, Elske E.; van der Schaaf, Letty; de Haan, Rob J.; Jansen, Henk M.

2008-01-01

OBJECTIVE: To assess the effects of additional information based nursing care program in the treatment of asthma and COPD patients at a pulmonary outpatient clinic. METHODS: In a double blind, randomized clinical trial, 191 patients were allocated to an additional care group or control group.

Antecedent Characteristics of Online Cancer Information Seeking Among Rural Breast Cancer Patients: An Application of the Cognitive-Social Health Information Processing (C-SHIP) Model

Science.gov (United States)

Shaw, Bret R.; DuBenske, Lori L.; Han, Jeong Yeob; Cofta-Woerpel, Ludmila; Bush, Nigel; Gustafson, David H.; McTavish, Fiona

2013-01-01

Little research has examined the antecedent characteristics of patients most likely to seek online cancer information. This study employs the Cognitive-Social Health Information Processing (C-SHIP) model as a framework to understand what psychosocial characteristics precede online cancer-related information seeking among rural breast cancer patients who often have fewer healthcare providers and limited local support services. Examining 144 patients who were provided free computer hardware, Internet access and training for how to use an Interactive Cancer Communication System, pre-test survey scores indicating patients’ psychosocial status were correlated with specific online cancer information seeking behaviors. Each of the factors specified by the C-SHIP model had significant relationships with online cancer information seeking behaviors with the strongest findings emerging for cancer-relevant encodings and self-construals, cancer-relevant beliefs and expectancies and cancer-relevant self-regulatory competencies and skills. Specifically, patients with more negative appraisals in these domains were more likely to seek out online cancer information. Additionally, antecedent variables associated with the C-SHIP model had more frequent relationships with experiential information as compared to didactic information. This study supports the applicability of the model to discern why people afflicted with cancer may seek online information to cope with their disease. PMID:18569368

Toward a patient-centered ambulatory after-visit summary: Identifying primary care patients' information needs.

Science.gov (United States)

Clarke, Martina A; Moore, Joi L; Steege, Linsey M; Koopman, Richelle J; Belden, Jeffery L; Canfield, Shannon M; Kim, Min S

2018-09-01

The purpose of this study was to determine the information needs of primary care patients as they review clinic visit notes to inform information that should be contained in an after-visit summary (AVS). We collected data from 15 patients with an acute illness and 14 patients with a chronic disease using semi-structured interviews. The acute patients reviewed seven major sections, and chronic patients reviewed eight major sections of a simulated, but realistic visit note to identify relevant information needs for their AVS. Patients in the acute illness group identified the Plan, Assessment and History of Present Illness the most as important note sections, while patients in the chronic care group identified Significant Lab Data, Plan, and Assessment the most as important note sections. This study was able to identify primary care patients' information needs after clinic visit. Primary care patients have information needs pertaining to diagnosis and treatment, which may be the reason why both patient groups identified Plan and Assessment as important note sections. Future research should also develop and assess an AVS based on the information gathered in this study and evaluate its usefulness among primary care patients. The results of this study can be used to inform the development of an after-visit summary that assists patients to fully understand their treatment plan, which may improve treatment adherence.

Abnormal neural hierarchy in processing of verbal information in patients with schizophrenia.

Science.gov (United States)

Lerner, Yulia; Bleich-Cohen, Maya; Solnik-Knirsh, Shimrit; Yogev-Seligmann, Galit; Eisenstein, Tamir; Madah, Waheed; Shamir, Alon; Hendler, Talma; Kremer, Ilana

2018-01-01

Previous research indicates abnormal comprehension of verbal information in patients with schizophrenia. Yet the neural mechanism underlying the breakdown of verbal information processing in schizophrenia is poorly understood. Imaging studies in healthy populations have shown a network of brain areas involved in hierarchical processing of verbal information over time. Here, we identified critical aspects of this hierarchy, examining patients with schizophrenia. Using functional magnetic resonance imaging, we examined various levels of information comprehension elicited by naturally presented verbal stimuli; from a set of randomly shuffled words to an intact story. Specifically, patients with first episode schizophrenia ( N  = 15), their non-manifesting siblings ( N  = 14) and healthy controls ( N  = 15) listened to a narrated story and randomly scrambled versions of it. To quantify the degree of dissimilarity between the groups, we adopted an inter-subject correlation (inter-SC) approach, which estimates differences in synchronization of neural responses within and between groups. The temporal topography found in healthy and siblings groups were consistent with our previous findings - high synchronization in responses from early sensory toward high order perceptual and cognitive areas. In patients with schizophrenia, stimuli with short and intermediate temporal scales evoked a typical pattern of reliable responses, whereas story condition (long temporal scale) revealed robust and widespread disruption of the inter-SCs. In addition, the more similar the neural activity of patients with schizophrenia was to the average response in the healthy group, the less severe the positive symptoms of the patients. Our findings suggest that system-level neural indication of abnormal verbal information processing in schizophrenia reflects disease manifestations.

Abnormal neural hierarchy in processing of verbal information in patients with schizophrenia

Directory of Open Access Journals (Sweden)

Yulia Lerner

2018-01-01

Full Text Available Previous research indicates abnormal comprehension of verbal information in patients with schizophrenia. Yet the neural mechanism underlying the breakdown of verbal information processing in schizophrenia is poorly understood. Imaging studies in healthy populations have shown a network of brain areas involved in hierarchical processing of verbal information over time. Here, we identified critical aspects of this hierarchy, examining patients with schizophrenia. Using functional magnetic resonance imaging, we examined various levels of information comprehension elicited by naturally presented verbal stimuli; from a set of randomly shuffled words to an intact story. Specifically, patients with first episode schizophrenia (N = 15, their non-manifesting siblings (N = 14 and healthy controls (N = 15 listened to a narrated story and randomly scrambled versions of it. To quantify the degree of dissimilarity between the groups, we adopted an inter-subject correlation (inter-SC approach, which estimates differences in synchronization of neural responses within and between groups. The temporal topography found in healthy and siblings groups were consistent with our previous findings – high synchronization in responses from early sensory toward high order perceptual and cognitive areas. In patients with schizophrenia, stimuli with short and intermediate temporal scales evoked a typical pattern of reliable responses, whereas story condition (long temporal scale revealed robust and widespread disruption of the inter-SCs. In addition, the more similar the neural activity of patients with schizophrenia was to the average response in the healthy group, the less severe the positive symptoms of the patients. Our findings suggest that system-level neural indication of abnormal verbal information processing in schizophrenia reflects disease manifestations.

Informed consent: do information pamphlets improve post-operative risk-recall in patients undergoing total thyroidectomy: prospective randomized control study.

Science.gov (United States)

Alsaffar, Hussain; Wilson, Lindsay; Kamdar, Dev P; Sultanov, Faizullo; Enepekides, Danny; Higgins, Kevin M

2016-02-13

Informed consent consists of basic five elements: voluntarism, capacity, disclosure, understanding, and ultimate decision-making. Physician disclosure, patient understanding, and information retention are all essential in the doctor-patient relationship. This is inclusive of helping patients make and manage their decisions and expectations better and also to deal with any consequences and/or complications that arise. This study investigates whether giving patients procedure-specific handouts pre-operatively as part of the established informed consent process significantly improves overall risk-recall following surgery. These handouts outline the anticipated peri-operative risks and complications associated with total thyroidectomy, as well as the corrective measures to address complications. In addition, the influence of potential confounders affecting risk-recall, such as anxiety and pre-existing memory disturbance, are also examined. Consecutive adult (≥18 years old) patients undergoing total thyroidectomy at a single academic tertiary care referral centre are included. Participants are randomly assigned into either the experimental group (with pamphlets) or the control group by a computerized randomization system (Clinstat). All participants filled out a Hospital Anxiety and Depression Scale (HADS) and they are tested by the physician for short-term memory loss using the Memory Impairment Screen (MIS) exam. All patients are evaluated at one week post-operatively. The written recall questionnaire test is also administered during this clinical encounter. Forty-nine patients are included--25 of them receive verbal consent only, while another 24 patients received both verbal consent and patient education information pamphlets. The overall average of correct answers for each group was 83% and 80% in the control and intervention groups, respectively, with no statistically significant differences. There are also no statistically significant differences between the

Do Patients Feel Well Informed in a Radiation Oncology Service?

Science.gov (United States)

Jimenez-Jimenez, Esther; Mateos, Pedro; Ortiz, Irene; Aymar, Neus; Vidal, Meritxell; Roncero, Raquel; Pardo, Jose; Soto, Carmen; Fuentes, Concepción; Sabater, Sebastià

2018-04-01

Information received by cancer patients has gained importance in recent decades. The aim of this study was to evaluate the perception of information received by oncological patients in a radiotherapy department and to measure the importance of the other information sources. A cross-sectional study was conducted, evaluating patients who received radiotherapy. All the patients were asked two questionnaires: the EORTC QLQ-INFO26 module evaluating their satisfaction with received information, and a questionnaire analyzing other sources of information search. One hundred patients between 27 and 84 years were enrolled. Breast cancer (26 %) was the commonest cancer. Patients felt better informed about the medical tests and secondly about the performed treatment. The younger patients were those who were more satisfied with the information received and patients with no formal education felt less satisfied, with statistically significant differences. Patients did not seek external information; at the most, they asked relatives and other people with cancer. Patients were satisfied with the received information, although a high percentage would like more information. In general, patients did not search for external information sources. Age and educational level seem to influence in the satisfaction with the received information.

Preoperative Surgical Discussion and Information Retention by Patients.

Science.gov (United States)

Feiner, David E; Rayan, Ghazi M

2016-10-01

To assess how much information communicated to patients is understood and retained after preoperative discussion of upper extremity procedures. A prospective study was designed by recruiting patients prior to undergoing upper extremity surgical procedures after a detailed discussion of their operative technique, postoperative care and treatment outcomes. Patients were given the same 20-item questionnaire to fill out twice, at two pre operative visits. An independent evaluator filled out a third questionnaire as a control. Various discussion points of the survey were compared among the 3 questionnaires and retained information and perceived comprehension were evaluated. The average patients' age was 50.3 (27-75) years The average time between the two surveys preoperative 1 and preoperative 2 was 40.7 (7-75) days,. The average patient had approximately 2 years of college or an associate's degree. Patients initially retained 73% (52-90%) of discussion points presented during preoperative 1 and 61% (36-85%) of the information at preoperative 2 p = .002. 50% of patients felt they understood 100% of the discussion, this dropped to only 10% at their preoperative 2 visit. 15% of our patients did not know what type of anesthesia they were having at preoperative 2. A communication barrier between patients and physicians exists when patients are informed about their preoperative surgical discussion. The retention of information presented is worsened with elapsing time from the initial preoperative discussion to the second preoperative visit immediately prior to surgery. Methods to enhance patients' retention of information prior to surgery must be sought and implemented which will improve patients' treatment outcome.

Consequences of additional use of PET information for target volume delineation and radiotherapy dose distribution for esophageal cancer

International Nuclear Information System (INIS)

Muijs, Christina T.; Schreurs, Liesbeth M.; Busz, Dianne M.; Beukema, Jannet C.; Borden, Arnout J. van der; Pruim, Jan; Van der Jagt, Eric J.; Plukker, John Th.; Langendijk, Johannes A.

2009-01-01

Background and purpose: To determine the consequences of target volume (TV) modifications, based on the additional use of PET information, on radiation planning, assuming PET/CT-imaging represents the true extent of the tumour. Materials and methods: For 21 patients with esophageal cancer, two separate TV's were retrospectively defined based on CT (CT-TV) and co-registered PET/CT images (PET/CT-TV). Two 3D-CRT plans (prescribed dose 50.4 Gy) were constructed to cover the corresponding TV's. Subsequently, these plans were compared for target coverage, normal tissue dose-volume histograms and the corresponding normal tissue complication probability (NTCP) values. Results: The addition of PET led to the modification of CT-TV with at least 10% in 12 of 21 patients (57%) (reduction in 9, enlargement in 3). PET/CT-TV was inadequately covered by the CT-based treatment plan in 8 patients (36%). Treatment plan modifications resulted in significant changes (p < 0.05) in dose distributions to heart and lungs. Corresponding changes in NTCP values ranged from -3% to +2% for radiation pneumonitis and from -0.2% to +1.2% for cardiac mortality. Conclusions: This study demonstrated that TV's based on CT might exclude PET-avid disease. Consequences are under dosing and thereby possibly ineffective treatment. Moreover, the addition of PET in radiation planning might result in clinical important changes in NTCP.

Comparison of hybrid {sup 68}Ga-PSMA-PET/CT and {sup 99m}Tc-DPD-SPECT/CT for the detection of bone metastases in prostate cancer patients. Additional value of morphologic information from low dose CT

Energy Technology Data Exchange (ETDEWEB)

Janssen, Jan-Carlo; Meissner, Sebastian; Diederichs, Gerd; Hamm, Bernd; Makowski, Marcus R. [Charite, Department of Radiology, Berlin (Germany); Woythal, Nadine; Prasad, Vikas; Brenner, Winfried [Charite, Department of Nuclear Medicine, Berlin (Germany)

2018-02-15

This study compared {sup 68}Gallium-prostate-specific-membrane-antigen based Positron-emission-tomography ({sup 68}Ga-PSMA-PET) and {sup 99metastable}technetium-3,3-diphospho-1,2-propanedicarbonacid ({sup 99m}Tc-DPD-SPECT) in performing skeletal staging in prostate cancer (PC) patients and evaluated the additional value of the information from low-dose-computed tomography (CT). In this retrospective study, 54 patients who received {sup 68}Ga-PSMA-PET/CT and {sup 99m}Tc-DPD-SPECT/CT within 80 days were extracted from our database. Osseous lesions were classified as benign, malignant or equivocal. Lesion, region and patient based analysis was performed with and without CT fusion. The reference standard was generated by defining a best valuable comparator (BVC) containing information from all available data. In the patient based analysis, accuracies measured as ''area-under-the-curve'' (AUC) for {sup 68}Ga-PSMA-PET, {sup 99m}Tc-SPECT, {sup 68}Ga-PSMA-PET/CT and {sup 99m}Tc-SPECT/CT were 0.97-0.96, 0.86-0.83, 1.00 and 0.83, respectively (p<0.05) (ranges = optimistic vs. pessimistic view). Region based analysis resulted in the following sensitivities and specificities: 91.8-97.7%, 100-99.5% (PET); 61.2-70.6%, 99.8-98.3% (SPECT); 97.7%, 100% (PET/CT), 69.4% and 98.3% (SPECT/CT) (p<0.05). The amount of correct classifications of equivocal lesions by CT was significantly higher in PET (100%) compared to SPECT (52.4%) (p<0.05). {sup 68}Ga-PSMA-PET outperforms {sup 99m}Tc-DPD-SPECT in detecting bone metastases in PC patients. Additional information from low-dose-CT resulted in a significant reduction in equivocal lesions in both modalities, however {sup 68}Ga-PSMA-PET benefited most. (orig.)

"The Dose Makes the Poison": Informing Consumers About the Scientific Risk Assessment of Food Additives.

Science.gov (United States)

Bearth, Angela; Cousin, Marie-Eve; Siegrist, Michael

2016-01-01

Intensive risk assessment is required before the approval of food additives. During this process, based on the toxicological principle of "the dose makes the poison,ˮ maximum usage doses are assessed. However, most consumers are not aware of these efforts to ensure the safety of food additives and are therefore sceptical, even though food additives bring certain benefits to consumers. This study investigated the effect of a short video, which explains the scientific risk assessment and regulation of food additives, on consumers' perceptions and acceptance of food additives. The primary goal of this study was to inform consumers and enable them to construct their own risk-benefit assessment and make informed decisions about food additives. The secondary goal was to investigate whether people have different perceptions of food additives of artificial (i.e., aspartame) or natural origin (i.e., steviolglycoside). To attain these research goals, an online experiment was conducted on 185 Swiss consumers. Participants were randomly assigned to either the experimental group, which was shown a video about the scientific risk assessment of food additives, or the control group, which was shown a video about a topic irrelevant to the study. After watching the video, the respondents knew significantly more, expressed more positive thoughts and feelings, had less risk perception, and more acceptance than prior to watching the video. Thus, it appears that informing consumers about complex food safety topics, such as the scientific risk assessment of food additives, is possible, and using a carefully developed information video is a successful strategy for informing consumers. © 2015 Society for Risk Analysis.

Patients' information-seeking activity is associated with treatment compliance in inflammatory bowel disease patients.

Science.gov (United States)

Pittet, Valérie; Rogler, Gerhard; Mottet, Christian; Froehlich, Florian; Michetti, Pierre; de Saussure, Philippe; Burnand, Bernard; Vader, John-Paul

2014-06-01

Despite the chronic and relapsing nature of inflammatory bowel diseases (IBD), at least 30% to 45% of the patients are noncompliant to treatment. IBD patients often seek information about their disease. To examine the association between information-seeking activity and treatment compliance among IBD patients. To compare information sources and concerns between compliant and noncompliant patients. We used data from the Swiss IBD cohort study, and from a qualitative survey conducted to assess information sources and concerns. Crude and adjusted odds ratios (OR) for noncompliance were calculated. Differences in the proportions of information sources and concerns were compared between compliant and noncompliant patients. A total of 512 patients were included. About 18% (n = 99) of patients were reported to be noncompliant to drug treatment and two-thirds (n = 353) were information seekers. The OR for noncompliance among information seekers was 2.44 (95%CI: 1.34-4.41) after adjustment for confounders and major risk factors. General practitioners were 15.2% more often consulted (p = 0.019) among compliant patients, as were books and television (+13.1%; p = 0.048), whereas no difference in proportions was observed for sources such as internet or gastroenterologists. Information on tips for disease management were 14.2% more often sought among noncompliant patients (p = 0.028). No difference was observed for concerns on research and development on IBD or therapies. In Switzerland, IBD patients noncompliant to treatment were more often seeking disease-related information than compliant patients. Daily management of symptoms and disease seemed to be an important concern of those patients.

77 FR 67655 - Agency Information Collection Activities; Proposed Collection; Comment Request; Food Additive...

Science.gov (United States)

2012-11-13

... collection of information. Sec. 571.1(c) Moderate Category: For a food additive petition without complex... burden of 3,000 hours. Sec. 571.1(c) Complex Category: For a food additive petition with complex.... Sec. 570.17 Moderate Category: For an investigational food additive file without complex chemistry...

Why primary care practices should become digital health information hubs for their patients.

Science.gov (United States)

Baird, Aaron; Nowak, Samantha

2014-11-25

Two interesting health care trends are currently occurring: 1) patient-facing technologies, such as personal health records, patient portals, and mobile health apps, are being adopted at rapid rates, and 2) primary care, which includes family practice, is being promoted as essential to reducing health care costs and improving health care outcomes. While these trends are notable and commendable, both remain subject to significant fragmentation and incentive misalignments, which has resulted in significant data coordination and value generation challenges. In particular, patient-facing technologies designed to increase care coordination, often fall prey to the very digital fragmentation issues they are supposed to overcome. Additionally, primary care providers are treating patients that may have considerable health information histories, but generating a single view of such multi-source data is nearly impossible. We contribute to this debate by proposing that primary care practices become digital health information hubs for their patients. Such hubs would offer health data coordination in a medically professional setting with the benefits of expert, trustworthy advice coupled with active patient engagement. We acknowledge challenges including: costs, information quality and provenance, willingness-to-share information and records, willingness-to-use (by both providers and patients), primary care scope creep, and determinations of technical and process effectiveness. Even with such potential challenges, we strongly believe that more debate is needed on this topic prior to full implementation of various health information technology incentives and reform programs currently being designed and enacted throughout the world. Ultimately, if we do not provide a meaningful way for the full spectrum of health information to be used by both providers and patients, especially early in the health care continuum, effectively improving health outcomes may remain elusive. We view

Combination Cancer Therapy Can Confer Benefit via Patient-to-Patient Variability without Drug Additivity or Synergy.

Science.gov (United States)

Palmer, Adam C; Sorger, Peter K

2017-12-14

Combination cancer therapies aim to improve the probability and magnitude of therapeutic responses and reduce the likelihood of acquired resistance in an individual patient. However, drugs are tested in clinical trials on genetically diverse patient populations. We show here that patient-to-patient variability and independent drug action are sufficient to explain the superiority of many FDA-approved drug combinations in the absence of drug synergy or additivity. This is also true for combinations tested in patient-derived tumor xenografts. In a combination exhibiting independent drug action, each patient benefits solely from the drug to which his or her tumor is most sensitive, with no added benefit from other drugs. Even when drug combinations exhibit additivity or synergy in pre-clinical models, patient-to-patient variability and low cross-resistance make independent action the dominant mechanism in clinical populations. This insight represents a different way to interpret trial data and a different way to design combination therapies. Copyright © 2017 Elsevier Inc. All rights reserved.

Online information seeking by patients with bipolar disorder

DEFF Research Database (Denmark)

Conell, Jörn; Bauer, Rita; Glenn, Tasha

2016-01-01

alternative information sources remain important. Most patients do not discuss Internet findings with their doctor, and concern remains about the quality of online information especially related to prescription drugs. Patients may not rate search skills accurately, and may not understand limitations of online...... privacy. More patient education about online information searching is needed and physicians should recommend a few high quality websites....

Anesthesia in Mowat-Wilson syndrome: information on 11 Italian patients

Directory of Open Access Journals (Sweden)

Marianna Spunton

2018-03-01

Full Text Available Mowat-Wilson syndrome is a genetic disease caused by heterozygous mutations or deletions of the ZEB2 gene and characterized by typical clinical features. The congenital malformations typical of this syndrome call for early diagnostic and surgical procedures requiring general anesthesia, but few information about the anesthesiology management of such patients is available. We enrolled 11 families of patients with Mowat-Wilson syndrome who had undergone surgical or diagnostic procedures requiring general anesthesia, and sent them a retrospective questionnaire including 16 open questions about the procedures. They were further contacted by phone for a semi-structured interview. A total of 37 procedures requiring general anesthesia was reported in 11 patients. Only two patients reported anesthesia-related complications during the procedure. No true additional anesthesia-related risk was present for the patients with MW syndrome, besides difficult intubation, weaning and lower respiratory tract infection. Perception of risk, however, is derived by non-medical observation on the part of the parents.

Patient information and education with modern media: the Spine Society of Europe Patient Line.

Science.gov (United States)

Pellisé, Ferran; Sell, P

2009-08-01

The role of the patient as an active partner in health care, and not just a passive object of diagnostic testing and medical treatment, is widely accepted. Providing information to patients is considered a crucial issue and the central focus in patient educational activities. It is necessary to educate patients on the nature of the outcomes and the benefits and risks of the procedures to involve them in the decision-making process and enable them to achieve fully informed consent. Information materials must contain scientifically reliable information and be presented in a form that is acceptable and useful to patients. Given the mismatch between public beliefs and current evidence, strategies for changing the public perceptions are required. Traditional patient education programmes have to face the potential barriers of storage, access problems and the need to keep content materials up to date. A computer-based resource provides many advantages, including "just-in-time" availability and a private learning environment. The use of the Internet for patient information needs will continue to expand as Internet access becomes readily available. However, the problem is no longer in finding information, but in assessing the credibility and validity of it. Health Web sites should provide health information that is secure and trustworthy. The large majority of the Web sites providing information related to spinal disorders are of limited and poor quality. Patient Line (PL), a patient information section in the Web site of Eurospine, was born in 2005 to offer patients and the general population the accumulated expertise represented by the members of the society and provide up-to-date information related to spinal disorders. In areas where evidence is scarce, Patient Line provides a real-time opinion of the EuroSpine membership. The published data reflect the pragmatic and the common sense range of treatments offered by the Eurospine membership. The first chapters have been

Information needs of adolescent and young adult cancer patients and their parent-carers.

Science.gov (United States)

McCarthy, Maria C; McNeil, Robyn; Drew, Sarah; Orme, Lisa; Sawyer, Susan M

2018-05-01

This study aimed to explore health-related information needs of adolescent and young adults (AYAs) and their parent-carers and to examine demographic and clinical variables associated with unmet information needs, including patient activation. In a national cross-sectional study, 196 Australian AYAs diagnosed with cancer between 15 and 25 years and within 24 months of diagnosis and 204 parent-carers reported on total and unmet needs for cancer and health-related information. Fifty-one percent of AYAs were male, 81% had completed treatment and 86% were treated in adult hospitals. AYAs and parents reported high levels of total need for information. The mean number of unmet needs was 5.63 and 6.82 for AYAs and parents, respectively. AYAs reported the highest unmet needs in relation to their cancer (e.g. late effects and cancer recurrence, and having children in the future). The highest unmet parent information needs were related to medical information about their child as well as information on financial issues for their children and themselves. Unmet information need was associated with psychological distress (posttraumatic stress symptoms) for AYAs and parents. Patient activation was negatively associated with unmet information needs for AYAs. Demographic and treatment variables were not significantly associated with information needs. These findings indicate the importance of information needs for AYAs and their carers. The association between patient activation and information needs suggests that promoting young people's engagement with healthcare is a key opportunity within AYA care. Parent information needs and associated emotional distress additionally highlight the importance of family-centered care.

Knowledge, information and communication among cancer patients

International Nuclear Information System (INIS)

Parvez, T.; Saeed, N.; Pervaiz, K.

2001-01-01

Objective: Knowledge, information and communication, within oncology, are a core clinical strength for the out-come of the disease and inadequate communication, can cause distress for the patient and their families. Design: A senior doctor conducted this study by filling in the performa after interviewing the subject of the study. Place and duration of study: This study was done in Oncology Department of Service Hospital, Lahore and was completed in four months. Subjects and Method: One hundred cancer patients were interviewed regarding their knowledge about their disease, its causes, prognosis, and information supplied by the health-care providers. They were also asked about their satisfaction regarding this information, deficiencies and pitfalls in this information, need for more information, which should supply the information from among the hospital team or their relative, attitude of the family and their communication regarding the disease. Results: Study revealed that the knowledge about the disease and its causes was present in 53% and 7% respectively. The patients (59%) wanted more information. Majority perceived that the information was not adequate and needed more information and 68% thought that more information would reduce their anxiety. The attitude of family was found encouraging in 87% of patients and 42% were communicating with other family members regarding their diseases. Conclusion: Knowledge about the disease and its cause should be increasingly supplied by the doctors, as it will reduce the anxiety and have a good effect on health. Communication among the family members needs to be improved. (author)

78 FR 27936 - Request for Extension and Revision of a Currently Approved Information Collection With Additional...

Science.gov (United States)

2013-05-13

..., or auditing services. Such information includes; the name and location of the person or company..., mechanical, or other technological collection techniques or other forms of information technology. All... Extension and Revision of a Currently Approved Information Collection With Additional Merge of Additional...

Extraction and Analysis of Information Related to Research & Development Declared Under an Additional Protocol

International Nuclear Information System (INIS)

Idinger, J.; Labella, R.; Rialhe, A.; Teller, N.

2015-01-01

The additional protocol (AP) provides important tools to strengthen and improve the effectiveness and efficiency of the safeguards system. Safeguards are designed to verify that States comply with their international commitments not to use nuclear material or to engage in nuclear-related activities for the purpose of developing nuclear weapons or other nuclear explosive devices. Under an AP based on INFCIRC/540, a State must provide to the IAEA additional information about, and inspector access to, all parts of its nuclear fuel cycle. In addition, the State has to supply information about its nuclear fuel cycle-related research and development (R&D) activities. The majority of States declare their R&D activities under the AP Articles 2.a.(i), 2.a.(x), and 2.b.(i) as part of initial declarations and their annual updates under the AP. In order to verify consistency and completeness of information provided under the AP by States, the Agency has started to analyze declared R&D information by identifying interrelationships between States in different R&D areas relevant to safeguards. The paper outlines the quality of R&D information provided by States to the Agency, describes how the extraction and analysis of relevant declarations are currently carried out at the Agency and specifies what kinds of difficulties arise during evaluation in respect to cross-linking international projects and finding gaps in reporting. In addition, the paper tries to elaborate how the reporting quality of AP information with reference to R&D activities and the assessment process of R&D information could be improved. (author)

Assessing the information desire of patients with advanced cancer by providing information with a decision aid, which is evaluated in a randomized trial: a study protocol.

Science.gov (United States)

Oostendorp, Linda J M; Ottevanger, Petronella B; van der Graaf, Winette T A; Stalmeier, Peep F M

2011-02-14

There is a continuing debate on the desirability of informing patients with cancer and thereby involving them in treatment decisions. On the one hand, information uptake may be hampered, and additional stress could be inflicted by involving these patients. On the other hand, even patients with advanced cancer desire information on risks and prognosis. To settle the debate, a decision aid will be developed and presented to patients with advanced disease at the point of decision making. The aid is used to assess the amount of information desired. Factors related to information desire are explored, as well as the ability of the medical oncologist to judge the patient's information desire. The effects of the information on patient well-being are assessed by comparing the decision aid group with a usual care group. This study is a randomized controlled trial of patients with advanced colorectal, breast, or ovarian cancer who have started treatment with first-line palliative chemotherapy. The trial will consist of 100 patients in the decision aid group and 70 patients in the usual care group. To collect complete data of 170 patients, 246 patients will be approached for the study. Patients will complete a baseline questionnaire on sociodemographic data, well-being measures, and psychological measures, believed to predict information desire. The medical oncologist will judge the patient's information desire. After disease progression is diagnosed, the medical oncologist offers the choice between second-line palliative chemotherapy plus best supportive care (BSC) and BSC alone. Randomization will take place to determine whether patients will receive usual care (n = 70) or usual care and the decision aid (n = 100). The aid offers information about the potential risks and benefits of both treatment options, in terms of adverse events, tumour response, and survival. Patients decide for each item whether they desire the information or not. Two follow-up questionnaires will

The additional diagnostic value of a single-session combined scintigraphic and ultrasonographic examination in patients with thyroid and parathyroid diseases.

Science.gov (United States)

Gedik, G K; Bozkurt, F M; Ugur, O; Grassetto, G; Rubello, D

2008-09-01

The aim of this study was to investigate the diagnostic efficacy and the clinical impact of scintigraphy combined with ultrasonography (USG) in the management of thyroid and parathyroid disorders in a large series of patients. A total of 387 consecutive patients referred to the Nuclear Medicine Department of Hacettepe University in the period from January to September 2007 for investigating a thyroid (N. 339 patients: 232 females and 107 males, mean age+/-SD=48.9+/-13.6 years) or a parathyroid disease (N. 48 patients: 34 females and 14 males, mean age+/-SD=47.4+/-9.6 years) were prospectively evaluated, systematically performing both scintigraphy and USG in a single-day session. All the examinations were independently reviewed by two nuclear medicine physicians; in cases of discrepancy (3%) a final diagnosis was reached by consensus. For thyroid pathologies, USG results were considered to provide additional diagnostic information over scintigraphy: 1) if more nodules were identified; 2) if an irregular hyperactive area at scintigraphy suspicious for the presence of a nodule was clearly characterized at USG; 3) if a nodule missed at scintigraphy because of small size (thyroid diseases, scintigraphy was considered to provide additional diagnostic information over USG, if the functional status of a diffuse or uni- or multi-nodular goiter were clearly defined at scintigraphy. In parathyroid diseases, scintigraphy was considered to provide additional diagnostic information over USG, if the differential diagnosis between a lymph node or a muscle or a vessel depicted at USG was clearly defined as a parathyroid enlargement at scintigraphy. Lastly, the clinical impact of the single-day combined scintigraphic/USG protocol was evaluated. USG. In the thyroid diseases group, USG was particularly useful: 1) to detect additional nodules in glands with suppressed thyroid tissue; 2) to disclose small thyroid nodules (thyroid diseases group, scintigraphy was particularly useful: 1

Health Information Technology in Healthcare Quality and Patient Safety: Literature Review.

Science.gov (United States)

Feldman, Sue S; Buchalter, Scott; Hayes, Leslie W

2018-06-04

The area of healthcare quality and patient safety is starting to use health information technology to prevent reportable events, identify them before they become issues, and act on events that are thought to be unavoidable. As healthcare organizations begin to explore the use of health information technology in this realm, it is often unclear where fiscal and human efforts should be focused. The purpose of this study was to provide a foundation for understanding where to focus health information technology fiscal and human resources as well as expectations for the use of health information technology in healthcare quality and patient safety. A literature review was conducted to identify peer-reviewed publications reporting on the actual use of health information technology in healthcare quality and patient safety. Inductive thematic analysis with open coding was used to categorize a total of 41 studies. Three pre-set categories were used: prevention, identification, and action. Three additional categories were formed through coding: challenges, outcomes, and location. This study identifies five main categories across seven study settings. A majority of the studies used health IT for identification and prevention of healthcare quality and patient safety issues. In this realm, alerts, clinical decision support, and customized health IT solutions were most often implemented. Implementation, interface design, and culture were most often noted as challenges. This study provides valuable information as organizations determine where they stand to get the most "bang for their buck" relative to health IT for quality and patient safety. Knowing what implementations are being effectivity used by other organizations helps with fiscal and human resource planning as well as managing expectations relative to cost, scope, and outcomes. The findings from this scan of the literature suggest that having organizational champion leaders that can shepherd implementation, impact culture

Venous thromboembolism: Additional diagnostic value and radiation dose of pelvic CT venography in patients with suspected pulmonary embolism

International Nuclear Information System (INIS)

Reichert, Miriam; Henzler, Thomas; Krissak, Radko; Apfaltrer, Paul; Huck, Kurt; Buesing, Karen; Sueselbeck, Tim; Schoenberg, Stefan O.; Fink, Christian

2011-01-01

Purpose: To assess the additional diagnostic value of indirect CT venography (CTV) of the pelvis and upper thighs performed after pulmonary CT angiography (CTA) for the diagnosis of venous thromboembolism (VTE). Materials and methods: In a retrospective analysis, the radiology information system entries between January 2003 and December 2007 were searched for patients who received pulmonary CTA and additional CTV of the pelvis and upper thighs. Of those patients, the radiology reports were reviewed for the diagnosis of pulmonary embolism (PE) and deep venous thrombosis (DVT) in the pelvic veins and veins of the upper thighs. In cases with an isolated pelvic thrombosis at CTV (i.e. which only had a thrombosis in the pelvic veins but not in the veins of the upper thigh) ultrasound reports were reviewed for the presence of DVT of the legs. The estimated radiation dose was calculated for pulmonary CTA and for CTV of the pelvis. Results: In the defined period 3670 patients were referred to our institution for exclusion of PE. Of those, 642 patients (353 men, 289 women; mean age, 65 ± 15 years, age range 18-98 years) underwent combined pulmonary CTA and CTV. Among them, PE was found in 227 patients (35.4%). In patients without PE CTV was negative in all cases. In patients with PE, CTV demonstrated pelvic thrombosis in 24 patients (3.7%) and thrombosis of the upper thighs in 43 patients (6.6%). Of those patients 14 (2.1%) had DVT in the pelvis and upper thighs. In 10 patients (1.5%) CTV showed an isolated pelvic thrombosis. Of those patients ultrasound reports were available in 7 patients, which revealed DVT of the leg veins in 5 cases (1%). Thus, the estimated prevalence of isolated pelvic thrombosis detected only by pelvic CTV ranges between 1-5/642 patients (0.1-0.7%). Radiation dose ranges between 4.8 and 9.7 mSv for additional CTV of the pelvis. Conclusion: CTV of the pelvis performed after pulmonary CTA is of neglectable additional diagnostic value for the

Postoperative information needs and communication barriers of esophageal cancer patients.

Science.gov (United States)

Henselmans, Inge; Jacobs, Marc; van Berge Henegouwen, Mark I; de Haes, Hanneke C J M; Sprangers, Mirjam A G; Smets, Ellen M A

2012-07-01

Given the poor prognosis of esophageal cancer and the impact of surgery on health-related quality of life (HRQL), addressing patients' postoperative information needs is important. This study aimed to examine (1) the content and type of patients' information needs and (2) patient perceived facilitators and barriers to patient participation. Interviews were conducted with 20 purposefully selected esophageal cancer patients. Open and structured questions were alternated. The transcribed interviews were analysed inductively and deductively, using MAXqda. Patients' post-operative information needs concerned HRQL, medical care and prognosis, covering several sub-domains. Different types of needs were identified, e.g., requests for information about cause, course and self-management. Barriers to patient participation mostly reflected beliefs and skills, and could be categorized into agenda and communication barriers. Facilitators of patient participation reflected physician, patient and interaction characteristics, companion support and pre-visit preparation. Many patients saw merit in pre-visit preparation interventions; few endorsed skill-building interventions. This study listed the postoperative information needs of esophageal cancer patients. Moreover, it gained insight into patient-perceived barriers and facilitators of patient participation. The findings demonstrate what information physicians should have available and informs interventions to support patients in meeting their information needs. Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

Lay-friendliness in translated Patient Information Leaflets

DEFF Research Database (Denmark)

Jensen, Matilde Nisbeth; Zethsen, Karen Korning

This paper seeks to empirically explore the claim that translated Danish Patient Information Leaflets (PILs) are less lay-friendly than their English source texts. The last two decades have seen an increased focus on providing patients with lay-friendly, easily understood information, enabling them...... to make informed decisions concerning their health. For this purpose, many new genres have been created, one such genre being the PIL, a mandatory text which in an EU context has to accompany all medication informing patients about dosage, side effects etc. Legally, the PIL genre is required to ensure lay......-friendly information as it must be “written and designed to be clear and understandable, enabling the users to act appropriately” (Article 63(2) of EU Directive 2001/83/EC). Despite the legal requirements and the intensified focus on lay-friendly health communication, many studies have shown that PILs are often...

Creation New Patient Information Leaflets with Diabetes by Pharmacists and Assesment Conducted by Patients.

Science.gov (United States)

Arai, Motoharu; Maeda, Kazuto; Satoh, Hiroki; Miki, Akiko; Sawada, Yasufumi

2016-10-01

We created a draft of new patient information leaflets to ensure patients' proper use of drugs and to highlight safety issues and improvement plans extracted and proposed by small group discussions (SGD) with pharmacists. A total of 3 SGDs (participants: 15 pharmacists) were conducted with the aim of improving patient information leaflets for oral diabetes drugs. First, the disadvantages and advantages of the current instructions as well as requests for ideal patient information leaflets were obtained from participants. Conventional patient information leaflets that could be improved were useful to understand drug efficacy, adverse effects, and instructions for daily consumption of medicines, and to encourage patients to re-check drugs at home and inform their family of the measures to be taken in the case of adverse effects from the standpoint of patients. However, some disadvantages arose; for example, the instructions were difficult to read because of small lettering and illustrations and too much text. It was not tailored for individual patients, and descriptions about serious adverse effects caused patients much anxiety. Therefore, we have created a draft of new patient information leaflets with diabetes that are simpler and easier to understand and use concise wording and illustrations that are impactful.

Replacing Phosphorus-Containing Food Additives With Foods Without Additives Reduces Phosphatemia in End-Stage Renal Disease Patients: A Randomized Clinical Trial.

Science.gov (United States)

de Fornasari, Margareth Lage Leite; Dos Santos Sens, Yvoty Alves

2017-03-01

The purpose of the study was to verify the effects of replacing phosphorus-containing food additives with foods without additives on phosphatemia in end-stage renal disease (ESRD) patients. Randomized clinical trial. Adult patients on hemodialysis for ≥6 months at a single center. A total of 134 patients with phosphorus levels of >5.5 mg/dL were included and were randomized into an intervention group (n = 67) and a control group (n = 67). The IG received individual orientation to replace processed foods that have phosphorus additives with foods of similar nutritional value without these additives. The CG received only the nutritional orientation given before the study. Clinical laboratory data, nutritional status, energy and protein intake, and normalized protein nitrogen appearance (nPNA) were evaluated at the beginning of the study and after 90 days. There was no initial difference between the groups in terms of serum phosphorus levels, nutritional status, and energy intake. After 3 months, there was a decline in phosphorus levels in the IG (from 7.2 ± 1.4 to 5.0 ± 1.3 mg/dL, P food additives with foods without additives reduced serum phosphorus without interfering in the nutritional status of ESRD patients. Copyright © 2016 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.

Informing patients of risks inherent in treatment.

Science.gov (United States)

Griffith, Richard; Tengnah, Cassam

2009-11-01

Consent to treatment lies at the heart of autonomous decision making by patients who are entitled to make a free choice about whether to accept or refuse treatment. To help patients arrive at their decision district nurses must ensure that they give sufficient information about the nature and risks inherent in the treatment to allow an informed choice to be made. This article considers how much information regarding risks needs to be disclosed. It discusses how the law requires a different level of disclosure for patients who ask no questions about risks, those who make general enquiries about risks and those who ask specific questions about the risks inherent in treatment.

Patient-Centered Tools for Medication Information Search.

Science.gov (United States)

Wilcox, Lauren; Feiner, Steven; Elhadad, Noémie; Vawdrey, David; Tran, Tran H

2014-05-20

Recent research focused on online health information seeking highlights a heavy reliance on general-purpose search engines. However, current general-purpose search interfaces do not necessarily provide adequate support for non-experts in identifying suitable sources of health information. Popular search engines have recently introduced search tools in their user interfaces for a range of topics. In this work, we explore how such tools can support non-expert, patient-centered health information search. Scoping the current work to medication-related search, we report on findings from a formative study focused on the design of patient-centered, medication-information search tools. Our study included qualitative interviews with patients, family members, and domain experts, as well as observations of their use of Remedy, a technology probe embodying a set of search tools. Post-operative cardiothoracic surgery patients and their visiting family members used the tools to find information about their hospital medications and were interviewed before and after their use. Domain experts conducted similar search tasks and provided qualitative feedback on their preferences and recommendations for designing these tools. Findings from our study suggest the importance of four valuation principles underlying our tools: credibility, readability, consumer perspective, and topical relevance.

Satisfaction with information provided to Danish cancer patients

DEFF Research Database (Denmark)

Ross, Lone; Petersen, Morten Aagaard; Johnsen, Anna Thit

2013-01-01

To validate five items (CPWQ-inf) regarding satisfaction with information provided to cancer patients from health care staff, assess the prevalence of dissatisfaction with this information, and identify factors predicting dissatisfaction.......To validate five items (CPWQ-inf) regarding satisfaction with information provided to cancer patients from health care staff, assess the prevalence of dissatisfaction with this information, and identify factors predicting dissatisfaction....

Information Security in Distributed Healthcare : Exploring the Needs for Achieving Patient Safety and Patient Privacy

OpenAIRE

Åhlfeldt, Rose-Mharie

2008-01-01

In healthcare, patient information is a critical factor. The right information at the right time is a necessity in order to provide the best possible care for a patient. Patient information must also be protected from unauthorized access in order to protect patient privacy. It is furthermore common for patients to visit more than one healthcare provider, which implies a need for cross border healthcare and continuity in the patient process. This thesis is focused on information security in he...

Cognitive Investigation Study of Patients Admitted for Cosmetic Surgery: Information, Expectations, and Consent for Treatment

Directory of Open Access Journals (Sweden)

Mauro Barone

2015-01-01

Full Text Available BackgroundIn all branches of medicine, it is the surgeon's responsibility to provide the patient with accurate information before surgery. This is especially important in cosmetic surgery because the surgeon must focus on the aesthetic results desired by the patient.MethodsAn experimental protocol was developed based on an original questionnaire given to 72 patients. The nature of the responses, the patients' motivation and expectations, the degree of patient awareness regarding the planned operation, and the patients' perceptions of the purpose of the required consent for cosmetic surgery were all analyzed using Fisher's exact test.ResultsCandidates for abdominal wall surgery had significantly more preoperative psychological problems than their counterparts did (P=0.035. A significantly different percentage of patients under 40 years of age compared to those over 40 years of age searched for additional sources of information prior to the operation (P=0.046. Only 30% of patients with a lower educational background stated that the preoperative information had been adequate, whereas 92% of subjects with secondary schooling or a postsecondary degree felt that the information was sufficient (P=0.001. A statistically significant difference was also present between patients according to their educational background regarding expected improvements in their quality of life postoperatively (P=0.008.ConclusionsThis study suggests that patients require more attention in presurgical consultations and that clear communication should be prioritized to ensure that the surgeon understands the patient's expectations.

Patient decision making in the face of conflicting medication information

Directory of Open Access Journals (Sweden)

Emily Elstad

2012-08-01

Full Text Available When patients consult more than one source of information about their medications, they may encounter conflicting information. Although conflicting information has been associated with negative outcomes, including worse medication adherence, little is known about how patients make health decisions when they receive conflicting information. The objective of this study was to explore the decision making strategies that individuals with arthritis use when they receive conflicting medication information. Qualitative telephone interviews were conducted with 20 men and women with arthritis. Interview vignettes posed scenarios involving conflicting information from different sources (e.g., doctor, pharmacist, and relative, and respondents were asked how they would respond to the situation. Data analysis involved inductive coding to identify emergent themes and deductive contextualization to make meaning from the emergent themes. In response to conflicting medication information, patients used rules of thumb, trial and error, weighed benefits and risks, and sought more information, especially from a doctor. Patients relied heavily on trial and error when there was no conflicting information involved in the vignette. In contrast, patients used rules of thumb as a unique response to conflicting information. These findings increase our understanding of what patients do when they receive conflicting medication information. Given that patient exposure to conflicting information is likely to increase alongside the proliferation of medication information on the Internet, patients may benefit from assistance in identifying the most appropriate decision strategies for dealing with conflicting information, including information about best information sources.

Informal Patient Payments and Bought and Brought Goods in the Western Balkans – A Scoping Review

Directory of Open Access Journals (Sweden)

Sofie Buch Mejsner

2017-11-01

complex phenomenon. Additionally, the data on bought and brought goods illustrate that not much is known about this matter. Although informal patient payments have been studied and described in several settings, there is still little research on the effectiveness of such strategies in the Western Balkans context.

A study into the information needs of patients with urological cancers and the development of layered patient information

NARCIS (Netherlands)

Petit, V.

2017-01-01

Patients are nowadays increasingly responsible for their own care process. However, it has been shown that patients experience difficulties in managing their own disease. In order to empower patients, they need to have sufficient knowledge on the care process. Patients who are well informed are more

Roles for Information professionals in patient education: Librarians' perspective

Directory of Open Access Journals (Sweden)

Susan L. MacDonald

2010-07-01

Full Text Available Through an examination of librarians’ contributions to the PEPTalk research project, this article highlights roles for information professionals at various stages in the design and clinical implementation of an information system that delivers patient education. The Personal Education Plan (PEPTalk was a collaborative, multi-disciplinary research project (2005-2006 based at the University Health Network’s Princess Margaret Hospital that designed an information system to provide web-based health information resources to both patients and clinicians under a shared umbrella of patient education. This article provides an overview of the PEPTalk project methods and outcomes, and documents the contributions of librarians throughout the design and clinical implementation stages of the project. Librarians brought expertise about information seeking behaviours of both patients and clinicians to the project; liaised across institutional and professional boundaries; developed a classification system for online learning objects, and educated project team about information and health literacies. The contributions of librarians on the PEPTalk project illustrate the need for boundary spanners, information brokers, knowledge translators, and change champions in the design and implementation of patient education delivery systems. There are new roles emergent at the intersections of clinical practice and health information provision. There is a need for the traditional skills and expertise of librarians and other information professionals in tailoring health information. Yet the design and implementation of patient education systems also require the development of new skills and the application of advanced information literacy as it pertains to both clinicians and patients.

Can Internet information on vertebroplasty be a reliable means of patient self-education?

Science.gov (United States)

Sullivan, T Barrett; Anderson, Joshua T; Ahn, Uri M; Ahn, Nicholas U

2014-05-01

Studies of the quality and accuracy of health and medical information available on the Internet have shown that many sources provide inadequate information. However, to our knowledge, there are no published studies analyzing the quality of information available online regarding vertebroplasty. Because this has been a high-volume procedure with highly debated efficacy, it is critical that patients receive complete, accurate, and well-balanced information before deciding a treatment course. Additionally, few studies have evaluated the merit of academic site authorship or site certification on information quality, but some studies have used measurements of quality that are based primarily on subjective criteria or information accuracy rather than information completeness. The purposes of our study were (1) to evaluate and analyze the information on vertebroplasty available to the general public through the Internet; (2) to see if sites sponsored by academic institutions offered a higher quality of information; and (3) to determine whether quality of information varied according to site approval by a certification body. Three search engines were used to identify 105 web sites (35 per engine) offering information regarding vertebroplasty. Sites were evaluated for authorship/sponsorship, content, and references cited. Information quality was rated as "excellent," "high," "moderate," "low," or "unacceptable." Sites also were evaluated for contact information to set up an appointment. Data were analyzed as a complete set, then compared between authorship types, and finally evaluated by certification status. Academic sites were compared with other authorship groups and certified sites were compared with noncertified sites using Student's t-test. Appropriate indications were referenced in 74% of sites, whereas only 45% discussed a contraindication to the procedure. Benefits were expressed by 100% of sites, but risks were outlined in only 53% (p  0.05). Internet information

Informed consent for the administration of an intravenous contrast agent: importance and determinants of patient refusal

International Nuclear Information System (INIS)

Martel, J.; Garcia-Diaz, J. D.

1999-01-01

We proposed to determine the proportion of patients who refuse to undergo intravenous contrast administration and the factors that influence their refusal. Our series consisted of 442 patients who were supposed to undergo imaging studies involving the intravenous injection of an iodine contrast. In a personal interview, the patients were issued a questionnaire specifically designed for this study. The following parameters were recorded: sex, age, inpatient or outpatient status, medical history available, person who informed them about the procedure, person signing the informed consent (patient or other) , highest academic degree, attitude toward receiving the information and degree of concern after reading and signing the consent form. In our series 8.6% of the patients (95% confidence interval: 6-11.2) refused to sign the informed consent form. In addition, there were a number of patients who delayed the procedure or hindered the daily work schedule by some other means. When the relationship between each of the variables studied and refusal to sign the consent form was assessed, significant associations were observed between the latter and the academic level of the patient, his or her degree of concern and having received the information from a trained person. There was also a nearly significant trend toward the association between refusal and the patient's background. Relatively few patients refuse to sign the informed consent to receive intravenous contrast administration but this negative decision interferes with the health care practice. It is possible to identify certain correctable factors that influence the patient in this respect. (Author) 13 refs

Perspectives of patients with haematological cancer on how clinicians meet their information needs: "Managing" information versus "giving" it.

Science.gov (United States)

Atherton, Kirsten; Young, Bridget; Kalakonda, Nagesh; Salmon, Peter

2018-03-23

Practitioners treating patients with haematological cancers have extensive clinical information available to give to patients, and patients need to be informed. However, many patients want to be protected from having information that is too detailed or threatening. To illuminate how practitioners can address this dilemma and help patients feel appropriately informed, we explored patients' experience of feeling informed or uninformed. Semi-structured interviews were conducted with 20 patients who had been diagnosed with haematological cancer and had recently received results from clinical investigations or from evaluations of treatment response. Inductive and interpretive analysis of the transcribed audio-recorded interviews drew on constant comparison. Patients described the need for practitioners carefully to manage the information that they provided, and many felt alarmed by information that they did not experience as having been managed for them. A few patients who had difficulty trusting practitioners were not content with the information provided. These findings can be understood using attachment theory, whereby practitioners' careful management of information demonstrates their care for patients, and patients' trust in the practitioner enables them to feel informed. It follows that, when patients do not feel informed, the solution will not necessarily be more information but might be to help patients feel more secure in a caring clinical relationship. Copyright © 2018 John Wiley & Sons, Ltd.

What cancer patients find in the internet: the visibility of evidence-based patient information - analysis of information on German websites.

Science.gov (United States)

Liebl, Patrick; Seilacher, Eckart; Koester, Marie-Jolin; Stellamanns, Jan; Zell, Joerg; Hübner, Jutta

2015-01-01

The internet is an easy and always accessible source of information for cancer patients. The aim of our study was to evaluate the information provided on German websites. We developed an instrument based on criteria for patient information from the German Network for Evidence-based Medicine, the Agency for Quality in Medicine, HONcode, DISCERN, and the afgis. We simulated a patient's search and derived the websites for evaluation. We analyzed the visibility of each website and evaluated the websites using the developed instrument. We analyzed 77 websites. The highest visibility index was shown by 4 profit websites. Websites from professional societies and self-help groups have low rankings. Concerning quality, websites from non-profit providers and self-help groups are on top. Websites with a profit interest have the lowest average score. A discrepancy exists between the visibility and the quality of the analyzed websites. With the internet becoming an important source of information on cancer treatments for patients, this may lead to false information and wrong decisions. We provide a list of suggestions as to how this risk may be reduced by complementary information from the physician and from trustworthy websites. © 2015 S. Karger GmbH, Freiburg.

The Norwegian National Summary Care Record: a qualitative analysis of doctors' use of and trust in shared patient information.

Science.gov (United States)

Dyb, Kari; Warth, Line Lundvoll

2018-04-06

This paper explores Norwegian doctors' use of and experiences with a national tool for sharing core patient health information. The summary care record (SCR; the Kjernejournal in Norwegian) is the first national system for sharing patient information among the various levels and institutions of health care throughout the country. The health authorities have invested heavily in the development, implementation and deployment of this tool, and as of 2017 all Norwegian citizens have a personalised SCR. However, as there remains limited knowledge about health professionals' use of, experiences with and opinions regarding this new tool, the purpose of this study was to explore doctors' direct SCR experiences. We conducted 25 in-depth interviews with 10 doctors from an emergency ward, 5 doctors from an emergency clinic and 10 doctors from 5 general practitioner offices. We then transcribed, thematically coded and analysed the interviews utilising a grounded theory approach. The SCRs contain several features for providing core patient information that is particularly relevant in acute or emergency situations; nonetheless, we found that the doctors generally used only one of the tool's six functions, namely, the pharmaceutical summary. In addition, they primarily used this summary for a few subgroups of patients, including in the emergency ward for unconscious patients, for elderly patients with multiple prescriptions and for patients with substance abuse conditions. The primary difference of the pharmaceutical summary compared with the other functions of the tool is that patient information is automatically updated from a national pharmaceutical server, while other clinically relevant functions, like the critical information category, require manual updates by the health professionals themselves, thereby potentially causing variations in the accuracy, completeness and trustworthiness of the data. Therefore, we can assume that the popularity of the pharmaceutical summary

An Experimental Comparison of a Co-Design Visualizing Personal Drug Information and Patient Information Leaflets: Usability Aspects.

Science.gov (United States)

Khodambashi, Soudabeh; Haugland, Dagrun; Ellingsberg, Anette; Kottum, Hanne; Sund, Janne Kutschera; Nytrø, Øystein

2017-01-01

Providing patients with specific information about their own drugs can reduce unintentional misuse and improve compliance. Searching for information is time-consuming when information is not personalized and is written using medical vocabulary that is difficult for patients to understand. In this study we explored patient information needs regarding visualizing of drug information and interrelationships by conducting a total of four co-design workshops with patients, other users and pharmacists. We developed a prototype and drug ontology to support reasoning about drug interactions. We evaluated individual performance in finding information, understanding the drug interactions, and learning from the provided information in the prototype compared to using patient information leaflets (PILs). We concluded that interactive visualization of drug information helps individuals find information about drugs, their side effects and interactions more quickly and correctly compared to using PILs. Our study is limited to co-morbid patients with transient ischaemic attack with several chronic diseases.

Preoperative information for ICU patients to reduce anxiety during and after the ICU-stay: protocol of a randomized controlled trial [NCT00151554

Directory of Open Access Journals (Sweden)

Koller Michael

2006-03-01

Full Text Available Abstract Background According to current evidence and psychological theorizing proper information giving seems to be a promising way to reduce patient anxiety. In the case of surgical patients, admission to the intensive care unit (ICU is strongly associated with uncertainty, unpredictability and anxiety for the patient. Thus, ICU specific information could have a high clinical impact. This study investigates the potential benefits of a specifically designed ICU-related information program for patients who undergo elective cardiac, abdominal or thoracic surgery and are scheduled for ICU stay. Methods/Design The trial is designed as a prospective randomized controlled trial including an intervention and a control group. The control group receives the standard preparation currently conducted by surgeons and anesthetists. The intervention group additionally receives a standardized information program with specific procedural, sensory and coping information about the ICU. A measurable clinical relevant difference regarding anxiety will be expected after discharge from ICU. Power calculation (α = 0.05; β = 0.20; Δ = 8.50 score points resulted in a required sample size of N = 120 cardiac surgical patients (n = 60 vs. n = 60. Furthermore, N = 20 abdominal or thoracic surgical patients will be recruited (n = 10 vs. n = 10 to gain insight to a possible generalization to other patient groups. Additionally the moderating effect of specific patient attributes (need for cognition, high trait anxiety will be investigated to identify certain patient groups which benefit most. Discussion The proposed study promises to strengthen evidence on effects of a specific, concise information program that addresses the information needs of patients scheduled for ICU stay.

Interventions before consultations for helping patients address their information needs.

Science.gov (United States)

Kinnersley, P; Edwards, A; Hood, K; Cadbury, N; Ryan, R; Prout, H; Owen, D; Macbeth, F; Butow, P; Butler, C

2007-07-18

patient satisfaction (SMD 0.09 (95% CI 0.03 to 0.16)). There was a notable but not statistically significant decrease in patient anxiety before consultations (weighted mean difference (WMD) -1.56 (95% CI -7.10 to 3.97)). There were small and not statistically significant changes in patient anxiety after consultations (reduced) (SMD -0.08 (95%CI -0.22 to 0.06)), patient knowledge (reduced) (SMD -0.34 (95% CI -0.94 to 0.25)), and consultation length (increased) (SMD 0.10 (95% CI -0.05 to 0.25)). Further analyses showed that both coaching and written materials produced similar effects on question asking but that coaching produced a smaller increase in consultation length and a larger increase in patient satisfaction. Interventions immediately before consultations led to a small and statistically significant increase in consultation length, whereas those implemented some time before the consultation had no effect. Both interventions immediately before the consultation and those some time before it led to small increases in patient satisfaction, but this was only statistically significant for those immediately before the consultation. There appear to be no clear benefits from clinician training in addition to patient interventions, although the evidence is limited. Interventions before consultations designed to help patients address their information needs within consultations produce limited benefits to patients. Further research could explore whether the quality of questions is increased, whether anxiety before consultations is reduced, the effects on other outcomes and the impact of training and the timing of interventions. More studies need to consider the timing of interventions and possibly the type of training provided to clinicians.

Health Information Exchange: What do patients want?

Science.gov (United States)

Medford-Davis, Laura N; Chang, Lawrence; Rhodes, Karin V

2017-12-01

To determine whether emergency department patients want to share their medical records across health systems through Health Information Exchange and if so, whether they prefer to sign consent or share their records automatically, 982 adult patients presenting to an emergency department participated in a questionnaire-based interview. The majority (N = 906; 92.3%) were willing to share their data in a Health Information Exchange. Half (N = 490; 49.9%) reported routinely getting healthcare outside the system and 78.6 percent reported having records in other systems. Of those who were willing to share their data in a Health Information Exchange, 54.3 percent wanted to sign consent but 90 percent of those would waive consent in the case of an emergency. Privacy and security were primary concerns of patients not willing to participate in Health Information Exchange and preferring to sign consent. Improved privacy and security protections could increase participation, and findings support consideration of "break-the-glass" provider access to Health Information Exchange records in an emergent situation.

Radiology and the Internet: A systematic review of patient information resources

Energy Technology Data Exchange (ETDEWEB)

Smart, James M; Burling, David

2001-11-01

AIM: To determine whether the internet is a useful resource for patients seeking information on radiological procedures. MATERIALS AND METHODS: A systematic search of the world wide web was performed by means of four general search engines (AltaVista, Yahoo{exclamation_point}, Infoseek and Excite). Twenty-eight suitable patient-directed websites on arteriography were identified for analysis. The value of this material was measured by establishing inclusion or exclusion of a number of factors relating to the procedure. Readability of the materials was evaluated using the Flesch reading ease score. RESULTS: Advice on preparation was included in 21 (75%) sites. Contraindications were found in 16 (57%) sites, risks in 6 (21%) and aftercare in 25 (89%). Result availability was discussed in 15 (54%) sites, with links to other radiology sites in 13 (46%). Visual aids were used in 6 (21%) sites and a contact address found in 27 (96%). Mean Flesch reading ease score was 57, with 46% of sites below the preferred minimum of 60. CONCLUSIONS: Few sites provide the range of information a patient needs before arriving for a procedure. In addition, the readability of the material on these sites is frequently set at a level incomprehensible to patients with lower levels of literacy. Smart, J.M. and Burling, D. (2001)

Radiology and the Internet: A systematic review of patient information resources

International Nuclear Information System (INIS)

Smart, James M.; Burling, David

2001-01-01

AIM: To determine whether the internet is a useful resource for patients seeking information on radiological procedures. MATERIALS AND METHODS: A systematic search of the world wide web was performed by means of four general search engines (AltaVista, Yahoo!, Infoseek and Excite). Twenty-eight suitable patient-directed websites on arteriography were identified for analysis. The value of this material was measured by establishing inclusion or exclusion of a number of factors relating to the procedure. Readability of the materials was evaluated using the Flesch reading ease score. RESULTS: Advice on preparation was included in 21 (75%) sites. Contraindications were found in 16 (57%) sites, risks in 6 (21%) and aftercare in 25 (89%). Result availability was discussed in 15 (54%) sites, with links to other radiology sites in 13 (46%). Visual aids were used in 6 (21%) sites and a contact address found in 27 (96%). Mean Flesch reading ease score was 57, with 46% of sites below the preferred minimum of 60. CONCLUSIONS: Few sites provide the range of information a patient needs before arriving for a procedure. In addition, the readability of the material on these sites is frequently set at a level incomprehensible to patients with lower levels of literacy. Smart, J.M. and Burling, D. (2001)

Information needs of patients with whiplash associated disorders: A Delphi study of patient beliefs.

Science.gov (United States)

Sterling, Joanna; Maujean, Annick; Sterling, Michele

2018-02-01

Whiplash associated disorders (WAD) result in significant personal and economic costs. Patient education and reassurance are recommended treatments for acute WAD but the information needs of patients have not been investigated. To determine what information whiplash-injured patients believe is important to help recovery in the acute stage of injury. A Delphi design survey series with three rounds. Thirty-three participants who had sustained a whiplash injury within the last three years were invited to participate. Participants were asked to provide five statements, in response to an open-ended question, regarding what they believed was the most important information to provide to patients following a whiplash injury. Nineteen patients responded and 85 statements were collected and reviewed independently by two of the authors to remove duplicates. The importance of the remaining items was rated by the participants in the second survey round. Items rated by >50% of participants as important were included in the third survey round. To be deemed key information, >80% of participants had to rate an item as important in this final round. Eighteen items met the criteria for key information. These points addressed four areas: assessment and treatment, recovery and symptoms, patient attitudes during treatment and relationships with health practitioners. The key information points endorsed by patients in this study may provide useful information to constitute a basis for reassurance and education provided to patients with WAD. The results also suggest that improved relationships between patients with whiplash and health practitioners is required. Copyright © 2017 Elsevier Ltd. All rights reserved.

Food-additive-induced urticaria: a survey of 838 patients with recurrent chronic idiopathic urticaria.

Science.gov (United States)

Di Lorenzo, Gabriele; Pacor, Maria Luisa; Mansueto, Pasquale; Martinelli, Nicola; Esposito-Pellitteri, Maria; Lo Bianco, Claudia; Ditta, Vito; Leto-Barone, Maria Stefania; Napoli, Nicola; Di Fede, Gaetana; Rini, Giovambattista; Corrocher, Roberto

2005-11-01

Recurrent chronic idiopathic urticaria (RCIU) is a common skin condition that affects 0.1-3% of the population in the USA and Europe and accounts for nearly 75% of all 'ordinary' chronic urticaria (CU) cases. We studied 838 consecutive patients with RCIU referred to hospital between 1998 and 2003. Patients with known causes of CU were excluded. Clinical history, physical examination, and symptom diaries were evaluated during two periods, a diet-free period (1 week) and a food-additive-free diet (FAFD) period (4 weeks), respectively, and two double-blind placebo-controlled (DBPC) challenges of six food additives were administered. The first DBPC challenge included a mixture of the six food additives (DBPCmixed) given to all patients. The second DBPC challenge comprised the single food additives, administered at increasing doses (DBPCsingle) to patients with a positive DBPCmixed test and 105 patients with a negative DBPCmixed test, as a control. The DBPCmixed challenge was positive in 116 patients. None of the 105 control patients had a positive DBPCsingle test. Only 31 DBPCsingle tests were positive in patients with positive DBPCmixed challenge. Twenty-four of the 116 patients showing a positive DBPCmixed challenge also had a positive DBPCsingle result. Our results confirmed that food additive hypersensitivity reactions occurred in few RCIU patients using DBPCsingle challenge. The combination of the results of FAFD and DBPCmixed challenge seems to be of considerable practical interest for allergists, internists and dermatologists, rather than the data of clinical history and the results of DBPCsingle challenge, in patients with RCIU. Copyright (c) 2005 S. Karger AG, Basel.

Tailored patient information using a database system: Increasing patient compliance in a day surgery setting

DEFF Research Database (Denmark)

Grode, Jesper Nicolai Riis; Grode, Louise; Steinsøe, Ulla

rehabilitation. The hospital is responsible of providing the patients with accurate information enabling the patient to prepare for surgery. Often patients are overloaded with uncoordinated information, letters and leaflets. The contribution of this project is a database system enabling health professionals...... to empower patients through tailored individualized information. Performing 6500 operations per year at our Day Surgery Centre, health professionals need a computer based system to create individualized information material. Health professionals must be able to adapt the information material quickly...... was established to support these requirements. A relational database system holds all information pieces in a granular, structured form. Each individual piece of information can be joined with other pieces thus supporting the tailoring of information. A web service layer caters for integration with output systems...

Patient-provider discussion of online health information: results from the 2007 Health Information National Trends Survey (HINTS).

Science.gov (United States)

Chung, Jae Eun

2013-01-01

Increasing numbers of people have turned to the Internet for health information. Little has been done beyond speculation to empirically investigate patients' discussion of online health information with health care professionals (HCPs) and patients' perception of HCPs' reactions to such discussion. The author analyzed data from the 2007 Health Information National Trends Survey (HINTS) to identify the characteristics of patients (a) who search for health information on the Internet, (b) who discuss the information found on the Internet with HCPs, and (c) who positively assess HCPs' reaction to the online information. Findings show that men were more likely than were women to have a conversation on online information with HCPs. It is unfortunate that patients who had trouble understanding or trusting online health information were no more likely to ask questions to or seek guidance from HCPs. Reactions of HCPs to online information were perceived as particularly negative by certain groups of patients, such as those who experienced poor health and those who had more concerns about the quality of their searched information. Results are discussed for their implications for patient empowerment and patient-HCP relationships.

A Computerized Hospital Patient Information Management System

Science.gov (United States)

Wig, Eldon D.

1982-01-01

The information processing needs of a hospital are many, with varying degrees of complexity. The prime concern in providing an integrated hospital information management system lies in the ability to process the data relating to the single entity for which every hospital functions - the patient. This paper examines the PRIMIS computer system developed to accommodate hospital needs with respect to a central patient registry, inpatients (i.e., Admission/Transfer/Discharge), and out-patients. Finally, the potential for expansion to permit the incorporation of more hospital functions within PRIMIS is examined.

Development of patient centric virtual organizations (PCVOs) in clinical environment for patient information management.

Science.gov (United States)

Mohyuddin; Gray, W A; Bailey, Hazel; Jones, Wendy; Morrey, David

2007-01-01

A novel Virtual Organization framework which incorporates wireless technology support is presented in the research work. The Virtual Organization is designed for a clinical environment to provide better patient information management and enhanced collaborative working of multidisciplinary care teams. The analysis studies the current clinical practices and looks at the general patient information resource structure currently in use for patient care. Based on this problem analysis and current requirements of the multi-disciplinary care team members, we propose a generic and sustainable Patient Centric Virtual Organization (PCVO) framework to complement the functionality of the existing infrastructure by incorporating wireless technologies support for improved patient information provision at the point of care. The preliminary results of the study identify and classify the specific point of care tasks suited to appropriate information resources needed by the care team members. This paper concentrates on the patient information management aspects brought in by incorporating wireless technologies at the point of care using patient information resources in a decentralized and distributed computing environment. This applied research is carried out in the secondary and tertiary care sector in the cancer domain. For the analysis and results of the pilot project, we have used a case study of a local NHS Cancer Hospital.

Factors affecting patients' online health information-seeking behaviours: The role of the Patient Health Engagement (PHE) Model.

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Graffigna, Guendalina; Barello, Serena; Bonanomi, Andrea; Riva, Giuseppe

2017-10-01

To identify the variables affecting patients' online health information-seeking behaviours by examining the relationships between patient participation in their healthcare and online health information-seeking behaviours. A cross-sectional survey of Italian chronic patients (N=352) was conducted on patient's online health information-seeking behaviours and patient participation-related variables. Structural equation modeling analysis was conducted to test the hypothesis. This study showed how the healthcare professionals' ability to support chronic patients' autonomy affect patients' participation in their healthcare and patient's online health information-seeking behaviours. However, results do not confirm that the frequency of patients' online health-information seeking behavior has an impact on their adherence to medical prescriptions. Assuming a psychosocial perspective, we have discussed how patients' engagement - conceived as the level of their emotional elaboration of the health condition - affects the patients' ability to search for and manage online health information. To improve the effectiveness of patients' online health information-seeking behaviours and to enhance the effectiveness of technological interventions in this field, healthcare providers should target assessing and improving patient engagement and patient empowerment in their healthcare. It is important that health professionals acknowledge patients' online health information-seeking behaviours that they discuss the information offered by patients and guide them to reliable and accurate web sources. Copyright © 2017 Elsevier B.V. All rights reserved.

49 CFR 40.331 - To what additional parties must employers and service agents release information?

Science.gov (United States)

2010-10-01

... service agents release information? 40.331 Section 40.331 Transportation Office of the Secretary of... Release of Information § 40.331 To what additional parties must employers and service agents release information? As an employer or service agent you must release information under the following circumstances...

Informed consent for phase I studies: evaluation of quantity and quality of information provided to patients.

Science.gov (United States)

Tomamichel, M; Sessa, C; Herzig, S; de Jong, J; Pagani, O; Willems, Y; Cavalli, F

1995-04-01

The process by which patients are informed and their consent is obtained in phase I trials has thus far been only marginally studied. Since 1986 we have followed an oral procedure, consisting of three consecutive conversations in which the investigator responsible for phase I studies, the research nurse and the patients' relatives and/or friends also participate, followed by the patients signing of a written consent form. It is required that six items of information considered essential by our staff be conveyed to patients by the responsible investigator. Meerwein's model, which defines three main dimensions of the informing process (the information itself, the emotional and interactive aspects), has been studied to ascertain whether it can be applied to evaluate the quality of the information proffered. Thirty-two conversations were taped, transcribed and evaluated by one psychiatrist and one psychologist. A quantitative analysis of information was performed by calculating the number of patients to whom the essential items of information had been conveyed. The qualitative analysis was performed by rating on a five-point scoring system, from 1 (very bad) to 5 (excellent), the three dimensions of the informing process for each patient and by calculating for each dimension the mean score of the constituent items. Complete information about the characteristics of the phase I drug and the modalities of the treatment and follow up was given to almost 80% of the patients. All but one of the items of the information dimension scored 3.5 or higher, with the one related to the assessment by the doctor of the patient's understanding at the end of the consultation scoring less than 3 in 53% of the patients. All items of the emotional dimension scored higher than 3.5. Greater difficulty was encountered by the physician with the interactive dimension, the lowest mean scores being reported on the items related to the doctor's awareness of the indirectly expressed anxieties of

Delivering Breast Reconstruction Information to Patients: Women Report on Preferred Information Delivery Styles and Options.

Science.gov (United States)

Webb, Carmen; Sharma, Vishal; Temple-Oberle, Claire

2018-02-01

To discover missed opportunities for providing information to women undergoing breast reconstruction in an effort to decrease regret and improve patient education, teaching modalities, and satisfaction. Thirty- to 45-minute semi-structured interviews were conducted exploring patient experiences with information provision on breast reconstruction. Purposeful sampling was used to include women with a variety of reconstruction types at different time points along their recovery. Using grounded theory methodology, 2 independent reviewers analyzed the transcripts and generated thematic codes based on patient responses. BREAST-Q scores were also collected to compare satisfaction scores with qualitative responses. Patients were interested in a wide variety of topics related to breast reconstruction including the pros and cons of different options, nipple-sparing mastectomies, immediate breast reconstruction, oncological safety/monitoring and the impact of chemotherapy and radiotherapy, secondary procedures (balancing, nipple reconstruction), post-operative recovery, and long-term expectations. Patients valued accessing information from multiple sources, seeing numerous photographs, being guided to reliable information online, and having access to a frequently asked questions file or document. Information delivery via interaction with medical personnel and previously reconstructed patients was most appreciated. Compared with BREAST-Q scores for satisfaction with the plastic surgeon (mean: 95.7, range: 60-100), informational satisfaction scores were lower at 74.7 (50-100), confirming the informational gaps expressed by interviewees. Women having recently undergone breast reconstruction reported key deficiencies in information provided prior to surgery and identified preferred information delivery options. Addressing women's educational needs is important to achieve appropriate expectations and improve satisfaction.

Informed patients: legal fiction or reality?

NARCIS (Netherlands)

Brink-Muinen, A. van den; Dulmen, S. van; Bensing, J.

2003-01-01

Background: Shared decision making is based on the assumption that it is acceptable, even important and probably favourable to involve patients in the decision-making process. To achieve this goal, patients need to be informed about the content and the aim of the treatment, alternative treatments,

What information do patients need following a whiplash injury? The perspectives of patients and physiotherapists.

Science.gov (United States)

Maujean, Annick; Sterling, Joanna; Sterling, Michele

2018-05-01

The aims of the present study were to identify information that individuals with whiplash associated disorders (WAD) need to know in the early stages of recovery and to establish whether there is a difference between what physiotherapists and whiplash-injured patients perceive as important information. Forty-one participants were recruited (20 whiplash-injured patients, 21 physiotherapists). Participants were asked to provide five statements to one open-ended question about what they believe is the most important information individuals with WAD need to know in the early stages of recovery. Participants provided 182 statements which were reviewed independently and organised into themes by two of the authors. Six key themes emerged from the statements. These included general information about whiplash injury, treatment and recovery, reassurance, provision of poor information and patients' interaction with general practitioners, maintaining daily activities, and compensation claims and litigation. Both patients and physiotherapists agreed on the type of general whiplash information that should be provided however, major differences were found with regard to information pertaining to compensation claims and litigation and maintaining daily activities. The findings of this study provide some insight into the type of information that WAD individuals require in the early stages of recovery. Implications for Rehabilitation The provision of reassurance can be an effective communication tool to decrease patients concerns about their injury and help strengthen the patient-health practitioner relationship. Although clinical guidelines for the management of whiplash injuries recommend that individuals must remain physically active post-injury, statements from the patient group indicate that this information is not always provided and clearly explained to patients. Keeping in line with the patient centred care approach of being responsive to patient needs and values, it is

Spatial interpolation of hourly rainfall – effect of additional information, variogram inference and storm properties

Directory of Open Access Journals (Sweden)

A. Verworn

2011-02-01

Full Text Available Hydrological modelling of floods relies on precipitation data with a high resolution in space and time. A reliable spatial representation of short time step rainfall is often difficult to achieve due to a low network density. In this study hourly precipitation was spatially interpolated with the multivariate geostatistical method kriging with external drift (KED using additional information from topography, rainfall data from the denser daily networks and weather radar data. Investigations were carried out for several flood events in the time period between 2000 and 2005 caused by different meteorological conditions. The 125 km radius around the radar station Ummendorf in northern Germany covered the overall study region. One objective was to assess the effect of different approaches for estimation of semivariograms on the interpolation performance of short time step rainfall. Another objective was the refined application of the method kriging with external drift. Special attention was not only given to find the most relevant additional information, but also to combine the additional information in the best possible way. A multi-step interpolation procedure was applied to better consider sub-regions without rainfall.

The impact of different semivariogram types on the interpolation performance was low. While it varied over the events, an averaged semivariogram was sufficient overall. Weather radar data were the most valuable additional information for KED for convective summer events. For interpolation of stratiform winter events using daily rainfall as additional information was sufficient. The application of the multi-step procedure significantly helped to improve the representation of fractional precipitation coverage.

Quality and readability of websites for patient information on tonsillectomy and sleep apnea.

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Chi, Ethan; Jabbour, Noel; Aaronson, Nicole Leigh

2017-07-01

Tonsillectomy is a common treatment for obstructive sleep apnea (OSA). The Internet allows patients direct access to medical information. Since information on the Internet is largely unregulated, quality and readability are variable. This study evaluates the quality and readability of the most likely visited websites presenting information on sleep apnea and tonsillectomy. The three most popular search engines (Google, Bing, Yahoo) were queried with the phrase "sleep apnea AND tonsillectomy." The DISCERN instrument was used to assess quality of information. Readability was evaluated using the Flesch-Kincaid Reading Grade Level (FKGL) and Flesch Reading Ease Score (FRES). Out of the maximum of 80, the average DISCERN quality score for the websites was 55.1 (SD- 12.3, Median- 60.5). The mean score for FRES was 42.3 (SD- 15.9, Median- 45.5), which falls in the range defined as difficult. No website was above the optimal score of 65. The mean score for the FKGL was US grade-level of 10.7 (SD- 1.6, Median- 11.6). Only 4(27%) websites were in the optimal range of 6-8. There was very weak correlation between FRES and DISCERN (r = 0.07) and FKGL and DISCERN (r = 0.21). Tonsillectomy is one of the most common surgeries in the US. However, the internet information readily available to patients varies in quality. Additionally, much of the information is above the recommended grade level for comprehension by the public. By being aware of what information patients are reading online, physicians can better explain treatments and address misunderstandings. Physicians may consider using similar methods to test the readability for their own resources for patient education. Copyright © 2017 Elsevier B.V. All rights reserved.

The impact of health information technology on patient safety.

Science.gov (United States)

Alotaibi, Yasser K; Federico, Frank

2017-12-01

Since the original Institute of Medicine (IOM) report was published there has been an accelerated development and adoption of health information technology with varying degrees of evidence about the impact of health information technology on patient safety.  This article is intended to review the current available scientific evidence on the impact of different health information technologies on improving patient safety outcomes. We conclude that health information technology improves patient's safety by reducing medication errors, reducing adverse drug reactions, and improving compliance to practice guidelines. There should be no doubt that health information technology is an important tool for improving healthcare quality and safety. Healthcare organizations need to be selective in which technology to invest in, as literature shows that some technologies have limited evidence in improving patient safety outcomes.

Perceptions of pharmacists and patients on information provision and their influence on patient satisfaction in Japanese community pharmacies.

Science.gov (United States)

Takaki, Hiroko; Abe, Takeru; Hagihara, Akihito

2015-12-01

The provision of information is now considered a major area in pharmacist-patient interactions. However, few reports have simultaneously evaluated patient and pharmacist perceptions with regard to the pharmacist's information provision. The aims were to clarify the perceptions of pharmacists and patients regarding information provision and the level of influence of those perceptions on patient satisfaction. A cross-sectional survey with respect to information provision was conducted for patients and pharmacists in community pharmacies in Fukuoka Prefecture, Japan. In total, 407 patient-pharmacist pairs were included in a t-test and multilevel analysis. The levels of patient perception regarding information provision were significantly higher than the levels of pharmacist perception in all variables. The pharmacists' perceived level of information provision concerning medication effects had a negative and significant association with patient satisfaction, while the patients' perceived level of information provision by the pharmacist had a positive and significant association with patient satisfaction. Higher patient expectations regarding the level of information provision concerning medication side effects and older age of the pharmacist were adversely related to patient satisfaction. Both pharmacist and patient perceptions of the information provision by pharmacists personalized to the patient had positive associations with patient satisfaction. Pharmacist perceptions related to the information provision were not associated with patient satisfaction. The present study highlights accurate information provision, building good patient-pharmacist relationships, and improving pharmaceutical care in community pharmacy settings. © 2015 John Wiley & Sons, Ltd.

Measuring mobile patient safety information system success: an empirical study.

Science.gov (United States)

Jen, Wen-Yuan; Chao, Chia-Cheng

2008-10-01

The Health Risk Reminders and Surveillance (HRRS) system was designed to deliver critical abnormal test results of severely ill patients from Laboratory, Radiology, and Pathology departments to physicians within 5 min using cell phone text messages. This paper explores the success of the HRRS system. This study employed an augmented version of the DeLone and McLean IS success model. Seven variables (system quality, information quality, system use, user satisfaction, mobile healthcare anxiety, impact on the individual and impact on the organization) were used to evaluate the success of the HRRS system. The interrelationships between the seven variables were hypothesized and the hypotheses were empirically tested. The results indicate that the information quality of the HRRS system is positively associated with both system use and user satisfaction. In addition, system use is positively associated with user satisfaction, which is also positively associated with mobile healthcare anxiety. Moreover, results indicate that impact on the individual is positively associated with both user satisfaction and mobile healthcare anxiety. Finally, the impact of the organization is positively associated with impact on the individual. The results of the study provide an expanded understanding of the factors that contribute to mobile patient safety information system (IS) success. Implications of the relationship between system use and physician mobile healthcare anxiety are discussed.

Using the internet to evaluate the opinion of patients with inflammatory bowel disease with regard to the available information.

Science.gov (United States)

Martín Fernández, Carmen; Maroto Martín, Carlos; Fernández Salazar, Luis

2018-05-01

patients need information for shared decision making. The aims of the study were to ascertain how patients with inflammatory bowel disease (IBD) felt about the information available and the way that their doctors informed them. In addition, how patients used the internet and factors that predicted a positive information evaluation were also assessed. a 39-item survey was designed that was distributed via the internet, principally using a Spanish Facebook site. four hundred and twenty completed surveys were received. Patients rated the information available with a mean of 8 points (maximum of 10) and 71% felt that their doctor informed them well or very well. Various deficiencies were found such as little information available at the time of diagnosis (58%); doubts after seeing the specialist (70%); insufficient information about IBD complications, disease course and dietary aspects; and a lack of appropriate internet webpage recommendations from specialists or pharmacists. Patients ranked the internet fourth as an information source, followed by their specialist, patient associations and other patients. Independent predictive factors of feeling well informed (≥ 8) included age, OR 1.539 (CI 1.047-2.261), p = 0.028; education, OR 1.544 (CI 1.110-2.147), p = 0,010; IBD evolution time, OR 1.267 (CI 1.003-1,601), p = 0.047; and good or very good information from the specialist, OR 3.262 (CI 2.425-4.388), p < 0.001. patients generally felt that they were well informed. However, there were aspects that needed improvement, such as information for younger patients or a lower education level, the information provided at diagnosis, information about specific or insufficiently covered IBD aspects and suggestions from doctors about high quality websites.

Magnetic resonance imaging in the preoperative setting for breast cancer patients with undetected additional disease

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Barco, Israel [Breast Unit, Department of Gynecology, University Hospital of Mútua Terrassa, Research Foundation Mútua Terrassa, University of Barcelona (Spain); Chabrera, Carolina [Department of Nursing, School of Health Science TecnoCampus Mataró-Maresme (Spain); and others

2016-10-15

Highlights: • Preoperative MRI displays additional disease in 10.4% of cases in patients with infiltrating ductal carcinoma. • In cases with a complex intraductal-associated component, MRI is helpful in managing the surgical approach, and can potentially reduce reoperation rates. • Preoperative MRI showed a 91.9% agreement with the final histology, but core-needle biopsy cannot be rejected, so as to limit unnecessary surgery. • When MRI shows additional disease, there is often a change in the initial surgical plan. • Evolving surgery techniques, such as oncoplastic procedures, can be safely performed as an alternative to mastectomy in some patients. - Abstract: Objective: The last few years have witnessed a significant increase in the preoperative use of Magnetic Resonance Imaging (MRI) for staging purposes in breast cancer (BC) patients. Many studies have confirmed the improvement that MRI can provide in terms of diagnostic assessment, especially with regard to additional disease foci. In the present study, we address the advantages and disadvantages of MRI in the preoperative setting for BC patients. Patients and methods: There were 1513 consecutive breast MRI studies performed in patients with either primary or recurrent BC, who were scheduled for surgery. Results: Beyond the primary lesion, 10.4% of our cases had additional disease at the final histological assessment. MRI overall sensitivity, when considering tumour size and additional foci together, was 74.3%, and 80.3% when considering additional foci exclusively. MRI specificity for additional disease was 95.3%, positive predictive value was 77.4%, and negative predictive value was 94.6%. Nevertheless, 5% of cases had additional tumours that were missed by MRI or, conversely, had additional foci on MRI that were not confirmed by histology. Age (p = 0.020) and lobular carcinomas (p = 0.030) showed significance in the multivariate analysis by logistic regression, using the presence of additional

Information needs of patients with spondyloarthritis about their disease.

Science.gov (United States)

Almodóvar, Raquel; Gratacós, Jordi; Zarco, Pedro

2017-06-02

1. To describe the information provided to, or inquired about, by patients with axial spondyloarthritis and psoriatic arthritis. 2. To analyze improvements. Analysis of the discourse of focus groups (with patients, some of them from patient associations, and rheumatologists). The discussion included the identification of elements that shape the reality being studied, describing the relationship among them and summarizing the results by: 1)thematic segmentation; 2)categorization according to situations, relationships, opinions, feelings or others; 3)coding of the various categories, and 4)interpretation of results. Representativeness was ensured by using a typological framework. Rheumatologists are the main source of information. Patient associations have a fundamental role and are well-regarded. Internet is used with caution due to its limited reliability. Patients are interested in: disease characteristics and treatments, the course and prognosis, and social, administrative and other kinds of support. More information is needed (objective and constructive, avoiding a catastrophic tone); it should be provided progressively, adjusted to patients features and needs. There are areas for improvement including: the standardization and updating of contents (based on scientific evidence), the optimization of informative materials (written, electronic), and other resources such as nursing and primary care. Rheumatologists are the main and most reliable source of information for patients with spondyloarthritis and psoriatic arthritis. Patient associations have an important role and are well-regarded. Changes in the content, format and sources of information are required. Copyright © 2017 Elsevier España, S.L.U. and Sociedad Española de Reumatología y Colegio Mexicano de Reumatología. All rights reserved.

Accuracy and completeness of patient information in organic World-Wide Web search for Mohs surgery: a prospective cross-sectional multirater study using consensus criteria.

Science.gov (United States)

Miller, Christopher J; Neuhaus, Isaac M; Sobanko, Joseph F; Veledar, Emir; Alam, Murad

2013-11-01

Many patients obtain medical information from the Internet. Inaccurate information affects patient care and perceptions. To assess the accuracy and completeness of information regarding Mohs micrographic surgery (MMS) on the Internet. Prospective cross-sectional Internet-based study reviewing 30 consecutive organic results from three U.S. urban areas on "Mohs surgery" using Google. Text was assessed using a consensus-derived rating scale that quantified necessary and additional or supplementary information about MMS, as well as wrong information. Websites were classified according to type of sponsor. Ninety-one percent of sites conveyed basic information about MMS. There was variation in the mean amount of additional information items (range 0-9) according to website type: 8.4, medical societies; 6.7, academic practices; 5.9, web-based medical information resources; 4.7, private practices; and 4.4, other (p web-based sources (mean 5.11, p web-based medical information sources also provide additional information. © 2013 by the American Society for Dermatologic Surgery, Inc. Published by Wiley Periodicals, Inc.

Evaluating radiotherapy patients' need for information: a study using a patient information booklet; Evaluation des besoins en information des patients suivis en radiotherapi: etude effectuee sur la base du livret de la radiotherapie

Energy Technology Data Exchange (ETDEWEB)

Bonnet, V.; Romestaing, P.; Gerard, J.P.; Mornex, F. [Centre Hospitalier Universitaire Lyon-Sud, Dept. d' Oncologie-Radiotherapie, 69 - Pierre-Benite (France); Couvreur, C. [Institut Gustave Roussy, Dept. d' Oncologie-Radiotherapie, 94 - Villejuif (France); Demachy, P. [Centre Hospitalier V. Dupouy, Centre de Radiologie et de Traitement des Tumeurs, 95 - Argenteuil (France); Kimmel, F. [Centre de Radiologie et de Traitement des Tumeurs, 92 - Meudon-la-Foret (France); Milan, H. [Centre Georges-Francois-Leclerc, 21 - Dijon (France); Noel, D. [Hopital Pitie-Salpetriere, Dept. d' Oncologie-Radiotherapie, 75 - Paris (France); Pace, M. [Hopital d' Annecy, Dept. d' Oncologie-Radiotherapie, 74 - Annecy (France); Raison, C. [Centre Catherine-de-Sienne, 44 - Nantes (France); Compagnon, C. [Ligue Nationale Contre le Cancer, 75 -Paris (France); Pigeon, P. [Isis Research, 69 - Lyon (France)

2000-08-01

The French Radiotherapy-Oncology Society (SFRO) and the National Trade of Radiotherapists-Oncologists (SNRO) elaborated and published a patient information booklet on radiotherapy, in 1999. This present study appraises the pertinence of the form and substance of this booklet one year after its release. Eight radiotherapy centers participated in this research which evaluated 162 patients at treatment initiation. The conclusions of this study demonstrated the importance of clearly informing patients of their disease, treatment, and the secondary effects of treatment. It is essential to emphasize that 97% of the patients declared that an information booklet is a real necessity, and that the one provided by the SFRO responds to the majority of their concerns. Obtaining technical and practical knowledge resulted in a reassurance about their treatment. The most revealing result is that 87% requested direct communication about their illness, and that cancer be named by this word and not other, evasive terms. Seventy-two percent of the patients requested more information about their cancer, different treatment options, and quality of life issues in an attempt to psychologically prepare themselves to face an illness for which they have little control. Patients refuse to be passive, and claim the right to become 'partners' of the medical teams, concerning their treatment and recovery. (authors)

Health information sources for different types of information used by Chinese patients with cancer and their family caregivers.

Science.gov (United States)

Xie, Bo; Su, Zhaohui; Liu, Yihao; Wang, Mo; Zhang, Ming

2017-08-01

Little is known about the information sources of Chinese patients with cancer and their family caregivers, yet this knowledge is critical for providing patient-centred care. To assess and compare the information sources used by Chinese patients with cancer and their family caregivers. The validated Health Information Wants Questionnaire (HIWQ) was translated and administered in March 2014. The oncology department of a general hospital in south-west China. A convenience sample of 198 individuals, including 79 patients with cancer (mean age=55.24, SD=13.80) and 119 family caregivers (mean age=46.83, SD=14.61). Ratings on the HIWQ items assessing information sources for different types of information. The interaction between information source and group was significant (F 3,576 =6.32, Pinformation than patients from the Internet. Caregivers and patients did not differ in the amount of information they obtained from doctors/nurses, interpersonal contacts or mass media. The interaction between information type and information source was significant (F 18,3456 =6.38, Pinformation of all types from doctors/nurses than from the other three sources and obtained more information from interpersonal contacts than from mass media or the Internet. The information sources of Chinese patients with cancer and their family caregivers were similar, with an important difference that caregivers obtained more online information than patients. These findings have important implications for patient care and education in China where the family typically plays a major role in the care and decision making. © 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd.

Perceived need for information of patients with haematological malignancies: a literature review.

Science.gov (United States)

Rood, Janneke A J; Eeltink, Corien M; van Zuuren, Florence J; Verdonck-de Leeuw, Irma M; Huijgens, Peter C

2015-02-01

To provide insight into the perceived need for information of patients with haematological malignancies. Providing timely and accurate information to patients diagnosed with a haematological malignancy is a challenge in clinical practice; treatment often has to start promptly, with little time to inform patients. Literature review. A comprehensive literature search was conducted from all available literature to May 2013 in the databases: Cumulative Index to Nursing and Allied Health Literature, PsycINFO and PubMed (Medline). Relevant studies were reviewed regarding the perceived need for information on various topics, sources of information and satisfaction with information provided. The initial search revealed 215 articles, fourteen of which were relevant. Patients need basic information on the disease (diagnosis and diagnostics), treatment (various treatment options, side effects and duration), prognosis (curability and prolonging life) and all other topics (recovery, self-care and psychosocial functioning). Need for detailed information varied between studies. Patients expressed a higher need for medical than for psychosocial information. Patients preferred to receive information from their doctors the most, followed by nurses. Most studies described patients' satisfaction with the information provided. Based on the limited number of data available, medical information is for patients of higher priority compared to psychosocial information. Patients need basic information on diagnosis, treatment, prognosis and all other topics. Need for detailed information varied between studies. Patients were satisfied with the provided information, preferably offered by doctors and nurses. The perceived need for information and satisfaction with the information provided differs strongly between patients. In clinical practice, more attention is needed for information tailored to the patient, taking into account important moderating factors such as age, type of cancer, time

Increased Access to Professional Interpreters in the Hospital Improves Informed Consent for Patients with Limited English Proficiency.

Science.gov (United States)

Lee, Jonathan S; Pérez-Stable, Eliseo J; Gregorich, Steven E; Crawford, Michael H; Green, Adrienne; Livaudais-Toman, Jennifer; Karliner, Leah S

2017-08-01

care for patients with LEP; however, these improvements did not eliminate the language-based disparity. Additional clinician educational interventions and more language-concordant care may be necessary for informed consent to equal that for English speakers.

Patient information about radiation therapy: a survey in Europe

International Nuclear Information System (INIS)

Hubert, Annie; Kantor, Guy; Dilhuydy, Jean-Marie; Toulouse, Claude; Germain, Colette; Le Polles, Gisele; Salamon, Roger; Scalliet, Pierre

1997-01-01

Background and purpose: We performed a survey to evaluate the present status and means of information given to patients treated by radiotherapy. A short questionnaire was sent, with the help of ESTRO, to 746 European heads of department with a request to send specific documents used for informing the patient. Within 2 months (March and April 1996) we received 290 answers (39%) and 97 centres sent documents. Materials and methods: Analysis of the questionnaire and the documents was performed quantitatively with usual statistical methods and qualitatively with a socio-anthropological method of content analysis. Results: Analysis of the questionnaire shows the major role of the radiation oncologist in giving information and writing documents. The 298 different samples sent from 97 centres represent a wide panel with a booklet of general information (59 booklets/57 centres), practical advice and specific explanations (177 documents/49 centres) and informed consent (36 documents/28 centres). The anthropological study was centred on the way information was given, evaluation of the patient's understanding and analysis of documents sent. Conclusion: This preliminary survey needs to be completed by a study, including the patient's point of view and needs, about the information given

Informal Caregiving for Cancer Patients

Science.gov (United States)

Romito, Francesca; Goldzweig, Gil; Cormio, Claudia; Hagedoorn, Mariët; Andersen, Barbara L.

2013-01-01

According to the recent worldwide estimation by the GLOBOCAN project, in total, 12.7 million new cancer cases and 7.6 million cancer deaths occurred in 2008. The worldwide number of cancer survivors within 5 years of diagnosis has been estimated at be almost 28.8 million. Informal caregivers, such as family members and close friends, provide essential support to cancer patients. The authors of this report provide an overview of issues in the study of informal caregivers for cancer patients and long-term survivors in the United States and Europe, characterizing the caregivers commonly studied; the resources currently available to them; and their unmet needs, their psychosocial outcomes, and the psychosocial interventions tailored to their special circumstances. A broad overview of the state of research and knowledge, both in Europe and the United States, and observations on the directions for future research are provided. PMID:23695928

Patients' use of the Internet for pain-related medical information

NARCIS (Netherlands)

de Boer, Maaike J.; Versteegen, Gerbrig J.; van Wijhe, Marten

Objective: Patients increasingly use the Internet for medical information. For doctor-patient communication it is important to gain insight into the use and impact of medical Internet searches of patients. This study aims to evaluate patients' use of the Internet for information about their pain

Application of a model of social information processing to nursing theory: how nurses respond to patients.

Science.gov (United States)

Sheldon, Lisa Kennedy; Ellington, Lee

2008-11-01

This paper is a report of a study to assess the applicability of a theoretical model of social information processing in expanding a nursing theory addressing how nurses respond to patients. Nursing communication affects patient outcomes such as anxiety, adherence to treatments and satisfaction with care. Orlando's theory of nursing process describes nurses' reactions to patients' behaviour as generating a perception, thought and feeling in the nurse and then action by the nurse. A model of social information processing describes the sequential steps in the cognitive processes used to respond to social cues and may be useful in describing the nursing process. Cognitive interviews were conducted in 2006 with a convenience sample of 5 nurses in the United States of America. The data were interpreted using the Crick and Dodge model of social information processing. Themes arising from cognitive interviews validated concepts of the nursing theory and the constructs of the model of social information processing. The interviews revealed that the support of peers was an additional construct involved in the development of communication skills, creation of a database and enhancement of self-efficacy. Models of social information processing enhance understanding of the process of how nurses respond to patients and further develop nursing theories further. In combination, the theories are useful in developing research into nurse-patient communication. Future research based on the expansion of nursing theory may identify effective and culturally appropriate nurse response patterns to specific patient interactions with implications for nursing care and patient outcomes.

Regional Longitudinal Myocardial Deformation Provides Incremental Prognostic Information in Patients with ST-Segment Elevation Myocardial Infarction.

Directory of Open Access Journals (Sweden)

Tor Biering-Sørensen

Full Text Available Global longitudinal systolic strain (GLS has recently been demonstrated to be a superior prognosticator to conventional echocardiographic measures in patients after myocardial infarction (MI. The aim of this study was to evaluate the prognostic value of regional longitudinal myocardial deformation in comparison to GLS, conventional echocardiography and clinical information.In total 391 patients were admitted with ST-Segment elevation myocardial infarction (STEMI, treated with primary percutaneous coronary intervention and subsequently examined by echocardiography. All patients were examined by tissue Doppler imaging (TDI and two-dimensional strain echocardiography (2DSE.During a median-follow-up of 5.3 (IQR 2.5-6.1 years the primary endpoint (death, heart failure or a new MI was reached by 145 (38.9% patients. After adjustment for significant confounders (including conventional echocardiographic parameters and culprit lesion, reduced longitudinal performance in the anterior septal and inferior myocardial regions (but not GLS remained independent predictors of the combined outcome. Furthermore, inferior myocardial longitudinal deformation provided incremental prognostic information to clinical and conventional echocardiographic information (Harrell's c-statistics: 0.63 vs. 0.67, p = 0.032. In addition, impaired longitudinal deformation outside the culprit lesion perfusion region was significantly associated with an adverse outcome (p<0.05 for all deformation parameters.Regional longitudinal myocardial deformation measures, regardless if determined by TDI or 2DSE, are superior prognosticators to GLS. In addition, impaired longitudinal deformation in the inferior myocardial segment provides prognostic information over and above clinical and conventional echocardiographic risk factors. Furthermore, impaired longitudinal deformation outside the culprit lesion perfusion region seems to be a paramount marker of adverse outcome.

A COMPARISON OF PATIENT AND HEALTHCARE PROFESSIONAL VIEWS WHEN ASSESSING QUALITY OF INFORMATION ON PITUITARY ADENOMA AVAILABLE ON THE INTERNET.

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Druce, Irena; Williams, Chantal; Baggoo, Carolyn; Keely, Erin; Malcolm, Janine

2017-10-01

Patients are increasingly turning to the internet to seek reliable sources of health information and desire guidance in assessing the quality of information as healthcare becomes progressively more complex. Pituitary adenomas are a rare, diverse group of tumors associated with increased mortality and morbidity whose management requires a multidisciplinary approach. As such, patients with this disorder are often searching for additional sources of healthcare information. We undertook a study to assess the quality of information available on the internet for patients with pituitary adenoma. After exclusion, 42 websites were identified based on a search engine query with various search terms. Each website was assessed in triplicate: once by a health professional, once by a simulated patient, and once by a patient who had a pituitary adenoma and underwent medical and surgical treatment. The assessment tools included a content-specific questionnaire, the DISCERN tool, and the Ensuring Quality Information for Patients tool. The readability of the information was assessed with the Flesch-Kincaid grade level. We found that the overall quality of information on pituitary adenoma on the internet was variable and written at a high grade level. Correlation between the different assessors was poor, indicating that there may be differences in how healthcare professionals and patients view healthcare information. Our findings highlight the importance of assessment of the health information by groups of the intended user to ensure the needs of that population are met. Abbreviation: EQIP = Ensuring Quality Information for Patients.

Bridging the care continuum: patient information needs for specialist referrals

Directory of Open Access Journals (Sweden)

Steltenkamp Carol L

2009-09-01

Full Text Available Abstract Background Information transfer is critical in the primary care to specialist referral process and has been examined extensively in the US and other countries, yet there has been little attention to the patient's perspective of the information transfer process. This cross-sectional study examined the quality of the information received by patients with a chronic condition from the referring and specialist physician in the specialist referral process and the relationship of the quality of information received to trust in the physicians. Methods Structured telephone interviews were conducted with a random sample of 250 patients who had experienced a referral to a specialist for the first visit for a chronic condition within the prior six months. The sample was selected from the patients who visited specialist physicians at any of the 500 hospitals from the National Research Corporation client base. Results Most patients (85% received a good explanation about the reason for the specialist visit from the referring physician yet 26% felt unprepared about what to expect. Trust in the referring physician was highly associated with the preparatory information patients received. Specialists gave good explanations about diagnosis and treatment, but 26% of patients got no information about follow-up. Trust in the specialist correlated highly with good explanations of diagnosis, treatment, and self-management. Conclusion Preparatory information from referring physicians influences the quality of the referral process, the subsequent coordination of care, and trust in the physician. Changes in the health care system can improve the information transfer process and improve coordination of care for patients.

Information technology-based standardized patient education in psychiatric inpatient care.

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Anttila, Minna; Koivunen, Marita; Välimäki, Maritta

2008-10-01

This paper is a report of a study to describe nurses' experiences of information technology-based standardized patient education in inpatient psychiatric care. Serious mental health problems are an increasing global concern. Emerging evidence supports the implementation of practices that are conducive to patient self-management and improved patient outcomes among chronically ill patients with mental health problems. In contrast, the attitude of staff towards information technology has been reported to be contradictory in mental health care. After 1 year of using an Internet-based portal (Mieli.Net) developed for patients with schizophrenia spectrum psychosis, all 89 participating nurses were asked to complete questionnaires about their experiences. The data were collected in 2006. Fifty-six participants (63%) returned completed questionnaires and the data were analysed using content analysis. Nurses' experiences of the information technology-based standardized patient education were categorized into two major categories describing the advantages and obstacles in using information technology. Nurses thought that it brought the patients and nurses closer to each other and helped nurses to provide individual support for their patients. However, the education was time-consuming. Systematic patient education using information technology is a promising method of patient-centred care which supports nurses in their daily work. However, it must fit in with clinical activities, and nurses need some guidance in understanding its benefits. The study data can be used in policy-making when developing methods to improve the transparency of information provision in psychiatric nursing.

26 CFR 1.852-7 - Additional information required in returns of shareholders.

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2010-04-01

... 26 Internal Revenue 9 2010-04-01 2010-04-01 false Additional information required in returns of shareholders. 1.852-7 Section 1.852-7 Internal Revenue INTERNAL REVENUE SERVICE, DEPARTMENT OF THE TREASURY (CONTINUED) INCOME TAX (CONTINUED) INCOME TAXES Regulated Investment Companies and Real Estate Investment...

Information security requirements in patient-centred healthcare support systems.

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Alsalamah, Shada; Gray, W Alex; Hilton, Jeremy; Alsalamah, Hessah

2013-01-01

Enabling Patient-Centred (PC) care in modern healthcare requires the flow of medical information with the patient between different healthcare providers as they follow the patient's treatment plan. However, PC care threatens the stability of the balance of information security in the support systems since legacy systems fall short of attaining a security balance when sharing their information due to compromises made between its availability, integrity, and confidentiality. Results show that the main reason for this is that information security implementation in discrete legacy systems focused mainly on information confidentiality and integrity leaving availability a challenge in collaboration. Through an empirical study using domain analysis, observations, and interviews, this paper identifies a need for six information security requirements in legacy systems to cope with this situation in order to attain the security balance in systems supporting PC care implementation in modern healthcare.

Cancer Patients and the Internet: a Survey Among German Cancer Patients.

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Ebel, Marie-Desiree; Stellamanns, Jan; Keinki, Christian; Rudolph, Ivonne; Huebner, Jutta

2017-09-01

An increasing number of patients and relatives use the Internet to get additional or initial information about their disease. The aim of the study was to reevaluate the Internet usage among German cancer patients. Using a standardized questionnaire, we did an anonymous survey on patients attending a series of lectures on complementary medicine in 2014. We received 255 questionnaires. Nearly 80 % of the participants stated that they used the Internet to read up information about health or medicine issues. There was no significant difference regarding gender, age, or status (patient, current treatment/former treatment; relatives). Most users use the Internet in order to get additional information after a consultation with a physician (82.2 %). Important qualities from the view of the patient are a trustable source (65.3 %), information from experts (59.6 %), and actual information (52.8 %). There is an increasing number of patients in Germany looking for information in the Internet mostly in the intention of getting additional information. Yet, as the quality of information is heterogeneous, false information may lead to distrust in the doctor or wrong decision-making. Accordingly, organizations working on improving quality of cancer care should engage in conveying comprehensive and actual information adapted to the needs of patients. Physicians should know trustful websites for referral of patients.

Prioritization of the hemodialysis patients' preferences in acquisition of health information: A strategy for patient education

Directory of Open Access Journals (Sweden)

Hassan Babamohamadi

2016-07-01

Full Text Available Full training according to the information needs of patients reduces health care costs and increases the quality of care. The present study was conducted aims to prioritize the preferences of hemodialysis patients in acquisition of health information to be able to provide training according to these preferences and their prioritization after achieving them. This study was a descriptive cross-sectional one which was conducted on all hemodialysis patients who visited Kowsar Hospital in Semnan within the year 2014-2015. Data collecting tool was researcher-made questionnaire which assessed physical information needs of patients in four areas of nutrition, energy, pain and discomfort, sleep and rest. Data were analyzed by SPSS software version 16 using the descriptive statistics.71 hemodialysis patients participated in this study. 68.6%, 50.7%, 42.6% and 46.7% of patients expressed acquisition information regarding hematopoietic foods, how to increase mobility, how to relieve itching during dialysis and mental activities before sleep as their first priorities, respectively. The results of this study showed that hemodialysis patients need to know what kinds of information in the field of physical problems. To facilitate adaptation and selfcare of patients, providing information and training based on the real needs of patients will be helpful.

Recall in older cancer patients: measuring memory for medical information.

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Jansen, Jesse; van Weert, Julia; van der Meulen, Nienke; van Dulmen, Sandra; Heeren, Thea; Bensing, Jozien

2008-04-01

Remembering medical treatment information may be particularly taxing for older cancer patients, but to our knowledge this ability has never been assessed in this specific age group only. Our purpose in this study was to investigate older cancer patients' recall of information after patient education preceding chemotherapy. We constructed a recall questionnaire consisting of multiple-choice questions, completion items, and open-ended questions related to information about treatment and recommendations on how to handle side effects. Immediately after a nursing consultation preceding chemotherapy treatment, 69 older patients (M = 71.8 years, SD = 4.1) completed the questionnaire. We checked recall against the actual communication in video recordings of the consultations. On average, 82.2 items were discussed during the consultations. The mean percentage of information recalled correctly was 23.2% for open-ended questions, 68.0% for completion items, and 80.2% for multiple-choice questions. Older cancer patients are confronted with a lot of information. Recall of information strongly depended on question format; especially active reproduction appeared to be poor. To improve treatment outcomes, it is important that cancer patients are able to actively retrieve knowledge about how to prevent and recognize adverse side effects and that this is checked by the health professional. We make suggestions on how to make information more memorable for older cancer patients.

26 CFR 54.9802-3T - Additional requirements prohibiting discrimination based on genetic information (temporary).

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2010-04-01

... assembles the data requested by M and, although N reviews it to delete genetic information, the data from a... discrimination based on genetic information (temporary). 54.9802-3T Section 54.9802-3T Internal Revenue INTERNAL... EXCISE TAXES § 54.9802-3T Additional requirements prohibiting discrimination based on genetic information...

Understanding the medicines information-seeking behaviour and information needs of South African long-term patients with limited literacy skills.

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Patel, Sonal; Dowse, Ros

2015-10-01

Although much health information-seeking behaviour (HISB) research has been reported in patients with good literacy skills, little is known about HISB in patients with limited literacy skills served by under-resourced health-care systems. To investigate medicine information-seeking behaviour and information needs in patients with limited literacy. Using a question guide, four focus group discussions (FGDs) were conducted to explore themes related to information needs, information-seeking practices and awareness of and ability to utilize information sources. Twenty-two isiXhosa-speaking long-term patients with limited formal education were recruited from a primary health-care clinic in South Africa. Discussions were audio-recorded and transcribed verbatim. NVivo(®) was used for initial coding of transcripts. Codes were analysed, and potential themes and subthemes in the entire data set were identified and refined. The results of this study reflect a passive, disempowered patient. Poor awareness of information sources, lack of health-related knowledge and stigma contributed to a lack of information-seeking practice, thus potentially adversely influencing patient-provider interactions. Patients neither asked questions nor were encouraged to ask questions. All expressed an unmet need for information and a desire for receiving the illustrated written medicines-related information displayed in the FGDs. The main sources of information were health-care professionals, followed by family and friends. The significant level of patient disempowerment and passivity reported amongst patients underpinned their inability to actively seek information. Neither sources of information nor types of appropriate medicines information could be identified. Unmet information needs and a desire for information were reported. © 2013 John Wiley & Sons Ltd.

The impact of health information technology on patient safety

Directory of Open Access Journals (Sweden)

Yasser K. Alotaibi

2017-12-01

Full Text Available Since the original Institute of Medicine (IOM report was published there has been an accelerated development and adoption of health information technology with varying degrees of evidence about the impact of health information technology on patient safety. This article is intended to review the current available scientific evidence on the impact of different health information technologies on improving patient safety outcomes. We conclude that health information technology improves patient’s safety by reducing medication errors, reducing adverse drug reactions, and improving compliance to practice guidelines. There should be no doubt that health information technology is an important tool for improving healthcare quality and safety. Healthcare organizations need to be selective in which technology to invest in, as literature shows that some technologies have limited evidence in improving patient safety outcomes.

Illness Beliefs, Treatment Beliefs and Information Needs as Starting Points for Patient Information: The Evaluation of an Intervention for Patients with Depression.

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Glattacker, Manuela; Heyduck, Katja; Meffert, Cornelia; Jakob, Teresa

2018-02-16

Patients with depression are often dissatisfied with disease- and therapy-related information. The objective of this study was to evaluate an intervention that applied the Common Sense Model to the provision of information during inpatient rehabilitation for patients with depression. The intervention was evaluated in a sequential control group design. Analyses of covariance were used to assess differences between the control and intervention groups. Changes with respect to illness and treatment beliefs (personal control, treatment control, coherence and concerns about medicines), satisfaction with information about medicines, illness and rehabilitation, and depressive burden were selected as primary outcome measures. We observed significant between-group differences indicating the intervention group's superiority in terms of satisfaction with information regarding medicines. However, the two groups' changes during rehabilitation did not differ in terms of the other outcomes. The intervention resulted in patients judging that their medication information needs had been more thoroughly fulfilled than those patients who received care-as-usual information. However, the intervention did not prove to be effective when the other outcome variables are considered. Taken together and bearing in mind the limitations of our study-particularly the non-randomised design-our results should be replicated in a randomised controlled trial.

Additional Support for the Information Systems Analyst Exam as a Valid Program Assessment Tool

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Carpenter, Donald A.; Snyder, Johnny; Slauson, Gayla Jo; Bridge, Morgan K.

2011-01-01

This paper presents a statistical analysis to support the notion that the Information Systems Analyst (ISA) exam can be used as a program assessment tool in addition to measuring student performance. It compares ISA exam scores earned by students in one particular Computer Information Systems program with scores earned by the same students on the…

[Subjective Level of Information and Information Needs of Patients with an Approved Rehabilitation Application and Patients at the End of Rehabilitation Results of a Written Survey].

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Walther, Anna Lena; Schreiber, Dora; Falk, Johannes; Deck, Ruth

2017-08-01

Aim The aim of the study was to identify the subjective level of information and information needs of patients with an approved rehabilitation application and patients at the end of rehabilitation with regard to preferred subjects and kind of information transfer. Method Written survey with N=283 patients with approved rehabilitation application and N=388 patients at the end of rehabilitation. Results Both groups reported high information needs particularly regarding treatments during rehabilitation, rehabilitation aftercare and rehabilitation aims. A conversation with their physician, a brochure and a website are the preferred information pathways. Conclusion Taking into account the topics for which both groups require information and the preference regarding the kind of information transfer can make a valuable contribution for the development of needs-oriented information material. © Georg Thieme Verlag KG Stuttgart · New York.

Magnetic resonance imaging in the preoperative setting for breast cancer patients with undetected additional disease.

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Barco, Israel; Chabrera, Carolina; García-Fernández, Antonio; Fraile, Manel; Vidal, MCarmen; González, Sonia; Lain, Jose María; Reñé, Assumpta; Canales, Lidia; Vallejo, Elena; Deu, Jordi; Pessarrodona, Antoni; Giménez, Nuria; García-Font, Marc

2016-10-01

The last few years have witnessed a significant increase in the preoperative use of Magnetic Resonance Imaging (MRI) for staging purposes in breast cancer (BC) patients. Many studies have confirmed the improvement that MRI can provide in terms of diagnostic assessment, especially with regard to additional disease foci. In the present study, we address the advantages and disadvantages of MRI in the preoperative setting for BC patients. There were 1513 consecutive breast MRI studies performed in patients with either primary or recurrent BC, who were scheduled for surgery. Beyond the primary lesion, 10.4% of our cases had additional disease at the final histological assessment. MRI overall sensitivity, when considering tumour size and additional foci together, was 74.3%, and 80.3% when considering additional foci exclusively. MRI specificity for additional disease was 95.3%, positive predictive value was 77.4%, and negative predictive value was 94.6%. Nevertheless, 5% of cases had additional tumours that were missed by MRI or, conversely, had additional foci on MRI that were not confirmed by histology. Age (p=0.020) and lobular carcinomas (p=0.030) showed significance in the multivariate analysis by logistic regression, using the presence of additional foci diagnosed by MRI as a dependent variable. Preoperative MRI seems to have a role in preoperative tumour staging for breast cancer patients, as it discloses additional disease foci in some patients, including contralateral involvement. However, given the lack of absolute accuracy, core-needle biopsy cannot be neglected in the diagnosis of such additional malignant foci, which could result in a change in surgical treatment. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Do patients' information needs decrease over the course of radiotherapy?

NARCIS (Netherlands)

Douma, Kirsten F. L.; Koning, Caro C. E.; Zandbelt, Linda C.; de Haes, Hanneke C. J. M.; Smets, Ellen M. A.

2012-01-01

We aimed to investigate if cancer patients' information needs decrease during radiotherapy and if so, which patient, consultation and radiation oncologist characteristics are associated with a decrease in information needs over time. In this longitudinal study, patients (n = 104) completed a

Using Patient-Reported Information to Improve Clinical Practice.

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Schlesinger, Mark; Grob, Rachel; Shaller, Dale

2015-12-01

To assess what is known about the relationship between patient experience measures and incentives designed to improve care, and to identify how public policy and medical practices can promote patient-valued outcomes in health systems with strong financial incentives. Existing literature (gray and peer-reviewed) on measuring patient experience and patient-reported outcomes, identified from Medline and Cochrane databases; evaluations of pay-for-performance programs in the United States, Europe, and the Commonwealth countries. We analyzed (1) studies of pay-for-performance, to identify those including metrics for patient experience, and (2) studies of patient experience and of patient-reported outcomes to identify evidence of influence on clinical practice, whether through public reporting or private reporting to clinicians. First, we identify four forms of "patient-reported information" (PRI), each with distinctive roles shaping clinical practice: (1) patient-reported outcomes measuring self-assessed physical and mental well-being, (2) surveys of patient experience with clinicians and staff, (3) narrative accounts describing encounters with clinicians in patients' own words, and (4) complaints/grievances signaling patients' distress when treatment or outcomes fall short of expectations. Because these forms vary in crucial ways, each must be distinctively measured, deployed, and linked with financial incentives. Second, although the literature linking incentives to patients experience is limited, implementing pay-for-performance systems appears to threaten certain patient-valued aspects of health care. But incentives can be made compatible with the outcomes patients value if: (a) a sufficient portion of incentives is tied to patient-reported outcomes and experiences, (b) incentivized forms of PRI are complemented by other forms of patient feedback, and (c) health care organizations assist clinicians to interpret and respond to PRI. Finally, we identify roles for the

Data-Driven Modeling for Minimizing the Side-Channel Information Leakage in Additive Manufacturing

OpenAIRE

Faezi, Sina

2017-01-01

Cyber-physical additive manufacturing systems consists of tight integration of cyber and physical domains. This results in new cross-domain vulnerabilities that poses unique security challenges. One of the challenges is preventing confidentiality breach due to physical-to-cyber domain attacks, where attackers can use physical analog emissions to steal the cyber-domain information. This information theft is based on the idea that an attacker can accurately estimate the relation between the ana...

Hardwiring patient blood management: harnessing information technology to optimize transfusion practice.

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Dunbar, Nancy M; Szczepiorkowski, Zbigniew M

2014-11-01

This review will describe recent applications of computerized provider order entry (CPOE) with clinical decision support systems (CDSS) in transfusion medicine and other novel ways information technology is being applied to support patient blood management (PBM) efforts. CPOE with CDSS can be used to encourage appropriate transfusion practices as part of an institutional PBM program. The impact of CPOE with CDSS is enhanced when the laboratory information system (LIS) can be linked to the electronic medical record (EMR) to enable adaptive alerts that query transfusion orders against current laboratory and/or clinical data to ensure provider ordering practice is consistent with institutional guidelines. Additional current applications of healthcare information technology to transfusion medicine include creation of electronic reports to support order auditing, assessment of blood product utilization and compliance monitoring. Application of healthcare information technology to transfusion medicine will expand, as more institutions embrace PBM and utilize their EMR and LIS to 'hardwire' appropriate transfusion practice. The impact of implementation of CPOE with CDSS is variable and influenced by multiple factors including existing practice patterns, provider receptiveness and system configuration.

Extra-phosphate load from food additives in commonly eaten foods: a real and insidious danger for renal patients.

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Benini, Omar; D'Alessandro, Claudia; Gianfaldoni, Daniela; Cupisti, Adamasco

2011-07-01

Restriction of dietary phosphorus is a major aspect of patient care in those with renal disease. Restriction of dietary phosphorus is necessary to control for phosphate balance during both conservative therapy and dialysis treatment. The extra amount of phosphorus which is consumed as a result of phosphate-containing food additives is a real challenge for patients with renal disease and for dieticians because it represents a "hidden" phosphate load. The objective of this study was to measure phosphorus content in foods, common protein sources in particular, and comprised both those which included a listing of phosphate additives and those which did not. Determinations of dry matter, nitrogen, total and soluble phosphate ions were carried out in 60 samples of foods, namely cooked ham, roast breast turkey, and roast breast chicken, of which, 30 were with declared phosphate additives and the other 30 similar items were without additives. Total phosphorus (290 ± 40 mg/100 g vs. 185 ± 23 mg/100 g, P additives than in foods without additives. No difference was detected between the 2 groups regarding dry matter (27.2 ± 2.0 g/100 g vs. 26.7 ± 1.9 g/100 g) or total nitrogen (3.15 ± 0.40 g/100 g vs. 3.19 ± 0.40 g/100 g). Consequently, phosphorus intake per gram of protein was much greater in the foods containing phosphorus additives (15.0 ± 3.1 mg/g vs. 9.3 ± 0.7 mg/g, P foods which contain phosphate additives have a phosphorus content nearly 70% higher than the samples which did not contain additives. This creates a special concern because this extra amount of phosphorus is almost completely absorbed by the intestinal tract. These hidden phosphates worsen phosphate balance control and increase the need for phosphate binders and related costs. Information and educational programs are essential to make patients with renal disease aware of the existence of foods with phosphate additives. Moreover, these facts highlight the need for national and international

Informing cancer patient based on his type of personality: the suspicious (paranoid) patient.

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Kallergis, G

2013-01-01

Imparting bad news had always been an unpleasant task for the physician, as shown from ancient years to our days. In the healthcare sector and as far as the cancer patient is concerned, the imparting of bad news is performed by the patient's doctor within a therapeutic relationship of course. The fundamental question is how a therapist could tailor the information to any patient and if "Is it possible to determine who should be told what, when and how ?". The aim of this paper was to describe the suspicious character or type of personality thoroughly so that any physician can make a diagnosis and tailor the information strategy to the patient's needs. As method of research was used the qualitative method through groups with doctors and nurses, while research within groups lasted for 5 years. The degree of informing of the suspicious personality in the range "minimal - small - medium - large - very large" is : the degree of denial varies between large and very large. The degree of informing varies between medium and small and sometimes minimal. Informing the Family: The hardest family to deal with. Pay attention to litigious mania. Avoid confrontation or be drawn into agreeing with the family views.

Attitudes toward health care providers, collecting information about patients' race, ethnicity, and language.

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Baker, David W; Hasnain-Wynia, Romana; Kandula, Namratha R; Thompson, Jason A; Brown, E Richard

2007-11-01

Experts recommend that health care providers (HCPs) collect patients' race/ethnicity and language, but we know little about public attitudes towards this. To determine attitudes towards HCPs collecting race/ethnicity and language data. A telephone survey was held with 563 Californians, including 105 whites, 97 blacks, 199 Hispanics (162 Spanish-speaking), 129 Asians (73 Chinese-speaking), and 33 multiracial individuals. Attitudes towards HCPs asking patients their race/ethnicity and preferred language, concerns about providing their own information, reactions to statements explaining the rationale for data collection, and attitudes towards possible policies. Most (87.8%) somewhat or strongly agreed that HCPs should collect race/ethnicity information and use this to monitor disparities, and 73.6% supported state legislation requiring this. Support for collection of patients' preferred language was even higher. However, 17.2% were uncomfortable (score 1-4 on 10-point scale) reporting their own race/ethnicity, and 46.3% of participants were somewhat or very worried that providing information could be used to discriminate against them. In addition, 35.9% of Hispanics were uncomfortable reporting their English proficiency. All statements explaining the rationale for data collection modestly increased participants' comfort level; the statement that this would be used for staff training increased comfort the most. Although most surveyed believe that HCPs should collect information about race/ethnicity and language, many feel uncomfortable giving this information and worry it could be misused. Statements explaining the rationale for collecting data may assuage concerns, but community engagement and legislation to prevent misuse may be needed to gain more widespread trust and comfort.

Informal patient payments in oncology practice

Directory of Open Access Journals (Sweden)

Fomenko, Tetiana

2012-07-01

Full Text Available BACKGROUND: In Europe, new cases of cancer are diagnosed in 4 million people yearly, of whom 837 000 die. In Ukraine of 160 000 new cases almost 100 000 die. With proper treatment, one third of cancer cases is curable, but informal payments (IPP in health care limit access to treatment. We aimed to explore the experience of people treated for cancer to identify obstacles in obtaining health care and the expert opinion about health care for cancer patients in Ukraine.METHODS: The study is exploratory. Semi-structured in-depth interviews were conducted with 15 convenience sample patients or their relatives as well as with three experts between October 2011 – April 2012. RESULTS. Solicitation or receipt of IPP depends on the organizational culture. Respondents do not mind about IPP, but want this to be their own decision. IPP are often considered a “thank” to the medical staff for the service. The significant percentage of expenditures while in treatment for patients is due to purchases of medicines at their own expense. The problem of a long process of diagnostics and incomplete information by the medical staff about the stage of cancer and possible prognoses are essential for the respondents. According to experts not sufficient number of specialists and equipment for proper diagnosis and treatment is another problem. The attitude of medical staff to the patient with cancer largely depends on the personal features of the staff.CONCLUSIONS: Significant problems perceived by cancer patients are related to purchase of medicines at their own expense, structural and organizational features of hospitals, where they are staying for the treatment. Informal payments largely depend on the personal qualities of medical staff. The government must ensure fairness and equal access in getting care in oncology practice because it mainly affects the health of the nation.

78 FR 77119 - Proposed Information Collection Request; Comment Request; Regulation of Fuels and Fuel Additives...

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2013-12-20

... Collection Request; Comment Request; Regulation of Fuels and Fuel Additives: 2011 Renewable Fuel Standards... collection request (ICR), ``Regulation of Fuels and Fuel Additives: 2011 Renewable Fuel Standards--Petition... whose disclosure is restricted by statute. FOR FURTHER INFORMATION CONTACT: Geanetta Heard, Fuels...

47 CFR 25.111 - Additional information.

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2010-10-01

... information it requires for the Advance Publication, Coordination and Notification of frequency assignments... information required by the ITU Radiocommunication Bureau to advance publish, coordinate and notify the frequencies to be used for tracking, telemetry and control functions of DBS systems. [56 FR 24016, May 28...

Patients want granular privacy control over health information in electronic medical records.

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Caine, Kelly; Hanania, Rima

2013-01-01

To assess patients' desire for granular level privacy control over which personal health information should be shared, with whom, and for what purpose; and whether these preferences vary based on sensitivity of health information. A card task for matching health information with providers, questionnaire, and interview with 30 patients whose health information is stored in an electronic medical record system. Most patients' records contained sensitive health information. No patients reported that they would prefer to share all information stored in an electronic medical record (EMR) with all potential recipients. Sharing preferences varied by type of information (EMR data element) and recipient (eg, primary care provider), and overall sharing preferences varied by participant. Patients with and without sensitive records preferred less sharing of sensitive versus less-sensitive information. Patients expressed sharing preferences consistent with a desire for granular privacy control over which health information should be shared with whom and expressed differences in sharing preferences for sensitive versus less-sensitive EMR data. The pattern of results may be used by designers to generate privacy-preserving EMR systems including interfaces for patients to express privacy and sharing preferences. To maintain the level of privacy afforded by medical records and to achieve alignment with patients' preferences, patients should have granular privacy control over information contained in their EMR.

Recall in older cancer patients: measuring memory for medical information.

NARCIS (Netherlands)

Jansen, J.; Weert, J. van; Meulen, N. van der; Dulmen, S. van; Heeren, T.; Bensing, J.

2008-01-01

PURPOSE: Remembering medical treatment information may be particularly taxing for older cancer patients, but to our knowledge this ability has never been assessed in this specific age group only. Our purpose in this study was to investigate older cancer patients' recall of information after patient

Recall in older cancer patients: Measuring memory for medical information

NARCIS (Netherlands)

Jansen, J.; van Weert, J.; van der Meulen, N.; van Dulmen, S.; Heeren, T.; Bensing, J.

2008-01-01

Purpose: Remembering medical treatment information may be particularly taxing for older cancer patients, but to our knowledge this ability has never been assessed in this specific age group only. Our purpose in this study was to investigate older cancer patients' recall of information after patient

Postoperative information needs and communication barriers of esophageal cancer patients

NARCIS (Netherlands)

Henselmans, Inge; Jacobs, Marc; van Berge Henegouwen, Mark I.; de Haes, Hanneke C. J. M.; Sprangers, Mirjam A. G.; Smets, Ellen M. A.

2012-01-01

Objective: Given the poor prognosis of esophageal cancer and the impact of surgery on health-related quality of life (HRQL), addressing patients' postoperative information needs is important. This study aimed to examine (1) the content and type of patients' information needs and (2) patient

Pectus patient information website has improved access to care and patient reported outcomes.

Science.gov (United States)

Tikka, Theofano; Webb, Joanne; Agostini, Paula; Kerr, Amy; Mannion, Glenn; Steyn, Richard S; Bishay, Ehab; Kalkat, Maninder S; Rajesh, Pala B; Naidu, Babu

2016-04-26

Pectus is the most common congenital disorder. Awareness amongst primary care physicians and the general public is poor. NHS commissioning bodies plan to withdraw funding for this surgery because they deem a lack of sufficient evidence of benefit. The purpose of this study is to assess the effects of introducing a patient information website on referral and activity patterns and on patients reported outcomes. We produced an innovative information website, www.pectus.co.uk , accessible to the general public, providing information about pectus deformities; management options and advice about surgery. Referral patterns and number of cases where studied before and after the introduction of the website in 2010. Patients' satisfaction post-op was assessed using the Brompton's single step questionnaire (SSQ). The website had considerable traffic with 2179 hits in 2012, 4983 in 2013 and 7416 in 2014. This has led to 1421 contacts and 372 email enquiries. These emails have resulted in an increased number of patients who have been assessed and go on to have surgery. We asked 59 pectus excavatum patients who were operated from 2008 to 2014 to complete the SSQ. We received 32 replies. Eighty-four percent (16/19) of patients who visited the website and then underwent surgery, found the website useful. All patients scored satisfactorily in SSQ. Even though those who visited the website tended to be more satisfied with the surgical outcomes this did not reach statistical significance. This group of patients said that would have the operation again given the option compared to 76.9 % of the group who did not visit the website before surgery (p=0.031). Despite the fact that patients who visited the website experienced more post-operative complications were equally or more satisfied with post-operative outcomes. The overall SSQ obtainable score was not different for the two subgroups, being more widespread in the group that did not visit the website. The introduction of a pectus

[Internet as a source of information about infertility among infertile patients].

Science.gov (United States)

Talarczyk, Joanna; Hauke, Jan; Poniewaz, Marta; Serdyńska-Szuster, Monika; Pawelczyk, Leszek; Jedrzejczak, Piotr

2012-04-01

Around one million couples in Poland suffer from infertility People in reproductive age are most active Internet users. The aim of the study was to assess Internet habits of infertile patients. We checked to what extent infertile patients seek information about infertility on-line and what is their approach to the information found. 85 female patients treated for infertility for at least one year were surveyed. The anonymous questionnaire was designed by the authors of the publication. It consisted of questions related to medical history of the patients and sources of information about infertility they used. It also checked Internet activity of the patients and contained Beck's Depression Inventory (BDI). Chi-square test and Spearman's correlation test were used to evaluate the results. The majority of patients used Internet to find information about infertility (93%); 46% of the respondent declared Internet forums to be their main source of information about it. Patients used on-line sources of information more often than stricte medical sources. Internet influenced their relation with the physician. 64% of patients verified on-line information and treatment proposed by their doctor before using them. One third of the surveyed women claimed their knowledge about infertility comes more from the Internet than the specialist who treated them. There was a positive correlation between patients who checked diagnostic or therapeutic methods proposed by their physician with depression in BDI. Considering the great impact of Internet forums and web pages on patient approach to diagnostics and treatment of infertility there seems to be a need to create a professional Polish website and forum to provide the patients with reliable information about the disease.

Information and shared decision-making are top patients' priorities

Directory of Open Access Journals (Sweden)

Bronstein Alexander

2006-02-01

Full Text Available Abstract Background The profound changes in medical care and the recent stress on a patient-centered approach mandate evaluation of current patient priorities. Methods Hospitalized and ambulatory patients at an academic medical center in central Israel were investigated. Consecutive patients (n = 274 indicated their first and second priority for a change or improvement in their medical care out of a mixed shortlist of 6 issues, 3 related to patient-physician relationship (being better informed and taking part in decisions; being seen by the same doctor each time; a longer consultation time and 3 issues related to the organizational aspect of care (easier access to specialists/hospital; shorter queue for tests; less charges for drugs. Results Getting more information from the physician and taking part in decisions was the most desirable patient choice, selected by 27.4% as their first priority. The next choices – access and queue – also relate to more patient autonomy and control over that of managed care regulations. Patients studied were least interested in continuity of care, consultation time or cost of drugs. Demographic or clinical variables were not significantly related to patients' choices. Conclusion Beyond its many benefits, being informed by their doctor and shared decision making is a top patient priority.

Relationship between patient dependence and direct medical-, social-, indirect-, and informal-care costs in Spain

Directory of Open Access Journals (Sweden)

Darbà J

2015-07-01

Full Text Available Josep Darbà,1 Lisette Kaskens2 1Department of Economics, University of Barcelona, 2BCN Health Economics and Outcomes Research SL, Barcelona, Spain Objective: The objectives of this analysis were to examine how patients' dependence on others relates to costs of care and explore the incremental effects of patient dependence measured by the Dependence Scale on costs for patients with Alzheimer's disease (AD in Spain. Methods: The Co-Dependence in Alzheimer's Disease study is an 18 multicenter, cross-sectional, observational study among patients with AD according to the clinical dementia rating score and their caregivers in Spain. This study also gathered data on resource utilization for medical care, social care, caregiver productivity losses, and informal caregiver time reported in the Resource Utilization in Dementia Lite instrument and a complementary questionnaire. The data of 343 patients and their caregivers were collected through the completion of a clinical report form during one visit/assessment at an outpatient center or hospital, where all instruments were administered. The data collected (in addition to clinical measures also included sociodemographic data concerning the patients and their caregivers. Cost analysis was based on resource use for medical care, social care, caregiver productivity losses, and informal caregiver time reported in the Resource Utilization in Dementia Lite instrument and a complementary questionnaire. Resource unit costs were applied to value direct medical-, social-, and indirect-care costs. A replacement cost method was used to value informal care. Patient dependence on others was measured using the Dependence Scale, and the Cumulative Index Rating Scale was administered to the patient to assess multi-morbidity. Multivariate regression analysis was used to model the effects of dependence and other sociodemographic and clinical variables on cost of care. Results: The mean (standard deviation costs per patient

Internet usage for health information by patients with epilepsy in China.

Science.gov (United States)

Liu, Jianming; Liu, Zhiliang; Zhang, Zhong; Dong, Sheng; Zhen, Zhe; Man, Li; Xu, Ruxiang

2013-11-01

Most patients with epilepsy report a desire for more information on the disease and possible treatments than provided by clinicians. In the past two decades, many have turned to the internet for information, but this information is of variable accuracy and objectivity. We assessed the prevalence of internet use for gathering information about epilepsy and patient satisfaction in a sample of epilepsy patients in China. A cross-sectional multicenter study was conducted using a standard anonymous questionnaire that gathered demographic information and information on internet use. The reasons for using the internet, the sites visited, general satisfaction with the information provided, and impact on self-management were investigated. Of the 780 patients studied, 288 (36.9%) had internet access and 73% of these participants reported searching for general information on epilepsy, 64% for treatment information, 30% to prepare for actual hospital visits, 12% to communicate with other patients, 5% for purchasing products for epilepsy management, and 6% for other reasons. All of the participants used search engines. However, only 6% browsed websites recommended by their doctors and 96.8% thought the information gathered from other sites was inadequate. The internet holds great potential for informing epileptic patients about their disease and to seek social support. Governments, hospitals, doctors, and internet service providers must collaborate to ensure that this information is reliable and beneficial. Copyright © 2013 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.

Development and fabrication of patient-specific knee implant using additive manufacturing techniques

Science.gov (United States)

Zammit, Robert; Rochman, Arif

2017-10-01

Total knee replacement is the most effective treatment to relief pain and restore normal function in a diseased knee joint. The aim of this research was to develop a patient-specific knee implant which can be fabricated using additive manufacturing techniques and has reduced wear rates using a highly wear resistant materials. The proposed design was chosen based on implant requirements, such as reduction in wear rates as well as strong fixation. The patient-specific knee implant improves on conventional knee implants by modifying the articulating surfaces and bone-implant interfaces. Moreover, tribological tests of different polymeric wear couples were carried out to determine the optimal materials to use for the articulating surfaces. Finite element analysis was utilized to evaluate the stresses sustained by the proposed design. Finally, the patient-specific knee implant was successfully built using additive manufacturing techniques.

Effects of the source of social comparison information on former cancer patients' quality of life.

Science.gov (United States)

Brakel, Thecla M; Dijkstra, Arie; Buunk, Abraham P

2012-11-01

Life, following curative treatment, can be a struggle for former cancer patients. In this phase of their illness, social comparison information may help to improve a patient's quality of life (QOL). The objective of this study was to determine whether the effects of this information depend on the following two variables: (1) the individual's physical health and (2) the individual's sensitivity to social comparison. In the current study, the effects on a patient's QOL were tested that occur when they are listening to a psychological oncological expert talking about cancer patients' experiences. Three different recorded interviews with experts were compared (on negative emotions, effective coping, or both), and individual differences were tested as moderators. In addition, the expert source conditions were compared with a condition in which the source was not an expert but a former patient. In a randomized field experiment, 154 Dutch former cancer patients (M(age) = 55 years; 68% women) were assigned to one of the four conditions (three expert source and one former patient source condition). QOL was assessed after 2 months. The effects of the expert source conditions on QOL depended on the participants' physical health (good vs. poor) and on the participants' sensitivity to social comparison (whether the recipient reacts with contrast or identification), as indicated by significant three-way interactions (p source conditions was at least as effective as the former patient source condition. The results show that desired and undesired effects are found when individual differences relevant to the processing of intervention information are examined. ©2012 The British Psychological Society.

Non-trauma-associated additional findings in whole-body CT examinations in patients with multiple trauma

International Nuclear Information System (INIS)

Hoffstetter, P.; Herold, T.; Daneschnejad, M.; Zorger, N.; Jung, E.M.; Feuerbach, S.; Schreyer, A.G.

2008-01-01

Purpose: whole-body CT scans for patients with multiple trauma represent an increasingly accepted first diagnostic tool. The multidetector approach in particular provides appropriate diagnostic algorithms for detecting nearly all relevant traumatic findings in a short time with a high grade of sensitivity and specificity. Non-trauma-associated additional findings are commonly depicted based on these CT examinations. The aim of this study is to evaluate the number and quality of these additional findings in consecutive patients with multiple trauma. Materials and methods: between 3/04 and 8/06 we scanned 304 patients according to our dedicated multiple trauma protocol. The examination protocol includes a head scan without intravenous contrast followed by a whole-body scan including the neck, thorax and abdomen acquired by a 16-row CT Scanner (Siemens, Sensation 16). The CT scans were retrospectively analyzed by two radiologists with respect to non-trauma-associated findings. Lesions were assessed according to their clinical relevance (highly relevant, moderately relevant, not relevant). For patients with highly relevant findings, additional follow-up research was performed. Results: The average age was 43 years (range 3 - 92). 236 of the patients were male (77.6%), 68 female (22.4%). 153 patients (50.3%) had additional non-trauma-associated findings. In 20 cases (6.6%) lesions with high clinical relevance were detected (e.g. carcinoma of the kidney or the ovary). In 71 patients (23.4%) findings with moderate relevance were described. In 63 patients (20.7%) additional findings without major relevance were diagnosed. Conclusion: Whole-body CT scans of patients randomized by a trauma show a considerable number of non-trauma-associated additional findings. In about 30% of cases, these findings are clinically relevant because further diagnostic workup or treatment in the short or medium-term is needed. The results of these analyses emphasize the diagnostic value of CT

Internet Health Information Seeking and the Patient-Physician Relationship: A Systematic Review

Science.gov (United States)

2017-01-01

Background With online health information becoming increasingly popular among patients, concerns have been raised about the impact of patients’ Internet health information-seeking behavior on their relationship with physicians. Therefore, it is pertinent to understand the influence of online health information on the patient-physician relationship. Objective Our objective was to systematically review existing research on patients’ Internet health information seeking and its influence on the patient-physician relationship. Methods We systematically searched PubMed and key medical informatics, information systems, and communication science journals covering the period of 2000 to 2015. Empirical articles that were in English were included. We analyzed the content covering themes in 2 broad categories: factors affecting patients’ discussion of online findings during consultations and implications for the patient-physician relationship. Results We identified 18 articles that met the inclusion criteria and the quality requirement for the review. The articles revealed barriers, facilitators, and demographic factors that influence patients’ disclosure of online health information during consultations and the different mechanisms patients use to reveal these findings. Our review also showed the mechanisms in which online information could influence patients’ relationship with their physicians. Conclusions Results of this review contribute to the understanding of the patient-physician relationship of Internet-informed patients. Our main findings show that Internet health information seeking can improve the patient-physician relationship depending on whether the patient discusses the information with the physician and on their prior relationship. As patients have better access to health information through the Internet and expect to be more engaged in health decision making, traditional models of the patient-provider relationship and communication strategies must be

Re-analysis of survival data of cancer patients utilizing additive homeopathy.

Science.gov (United States)

Gleiss, Andreas; Frass, Michael; Gaertner, Katharina

2016-08-01

In this short communication we present a re-analysis of homeopathic patient data in comparison to control patient data from the same Outpatient´s Unit "Homeopathy in malignant diseases" of the Medical University of Vienna. In this analysis we took account of a probable immortal time bias. For patients suffering from advanced stages of cancer and surviving the first 6 or 12 months after diagnosis, respectively, the results show that utilizing homeopathy gives a statistically significant (p<0.001) advantage over control patients regarding survival time. In conclusion, bearing in mind all limitations, the results of this retrospective study suggest that patients with advanced stages of cancer might benefit from additional homeopathic treatment until a survival time of up to 12 months after diagnosis. Copyright © 2016 Elsevier Ltd. All rights reserved.

Perceived need for information among patients with a haematological malignancy: associations with information satisfaction and treatment decision-making preferences.

Science.gov (United States)

Rood, Janneke A J; van Zuuren, Florence J; Stam, Frank; van der Ploeg, Tjeerd; Eeltink, Corien; Verdonck-de Leeuw, Irma M; Huijgens, Peter C

2015-06-01

For patients with haematological malignancies, information on disease, prognosis, treatment and impact on quality of life is of the utmost importance. To gain insight into the perceived need for information in relation to sociodemographic and clinical parameters, comorbidity, quality of life (QoL) and information satisfaction, we compiled a questionnaire based on existing validated questionnaires. A total of 458 patients diagnosed with a haematological malignancy participated. The perceived need for information was moderate to high (40-70%). Multivariate regression analyses showed that a higher need for information was related to younger age, worse QoL, being member of a patient society and moderate comorbidity. The need for disease and treatment-related information was higher than the need for psychosocial information. A higher need for disease and treatment-related information was associated to being diagnosed with multiple myeloma. A higher need for psychosocial information was related to a lower educational level. The information provision could be improved according to 41% of the patients. Higher satisfaction with provided information was associated with better QoL. Most patients (62%) reported that they wanted to be fully informed about their illness and actively involved in treatment decision-making. The results contribute to improving patient-tailored information provision and shared decision-making in clinical practice. Copyright © 2014 John Wiley & Sons, Ltd.

Library and information services: impact on patient care quality.

Science.gov (United States)

Marshall, Joanne Gard; Morgan, Jennifer Craft; Thompson, Cheryl A; Wells, Amber L

2014-01-01

The purpose of this paper is to explore library and information service impact on patient care quality. A large-scale critical incident survey of physicians and residents at 56 library sites serving 118 hospitals in the USA and Canada. Respondents were asked to base their answers on a recent incident in which they had used library resources to search for information related to a specific clinical case. Of 4,520 respondents, 75 percent said that they definitely or probably handled patient care differently using information obtained through the library. In a multivariate analysis, three summary clinical outcome measures were used as value and impact indicators: first, time saved; second, patient care changes; and third, adverse events avoided. The outcomes were examined in relation to four information access methods: first, asking librarian for assistance; second, performing search in a physical library; third, searching library's web site; or fourth, searching library resources on an institutional intranet. All library access methods had consistently positive relationships with the clinical outcomes, providing evidence that library services have a positive impact on patient care quality. Electronic collections and services provided by the library and the librarian contribute to patient care quality.

How do cancer patients navigate the public information environment? Understanding patterns and motivations for movement among information sources.

Science.gov (United States)

Nagler, Rebekah H; Romantan, Anca; Kelly, Bridget J; Stevens, Robin S; Gray, Stacy W; Hull, Shawnika J; Ramirez, A Susana; Hornik, Robert C

2010-09-01

Little is known about how patients move among information sources to fulfill unmet needs. We interviewed 43 breast, prostate, and colorectal cancer patients. Using a grounded theory approach, we identified patterns and motivations for movement among information sources. Overall, patients reported using one source (e.g., newspaper) followed by the use of another source (e.g., Internet), and five key motivations for such cross-source movement emerged. Patients' social networks often played a central role in this movement. Understanding how patients navigate an increasingly complex information environment may help clinicians and educators to guide patients to appropriate, high-quality sources.

Exploring patients' health information communication practices with social network members as a foundation for consumer health IT design.

Science.gov (United States)

Valdez, Rupa Sheth; Brennan, Patricia Flatley

2015-05-01

There is a need to ensure that the growing number of consumer health information technologies designed to support patient engagement account for the larger social context in which health is managed. Basic research on how patients engage this larger social context is needed as a precursor to the development of patient-centered consumer health information technology (IT) solutions. The purpose of this study was to inform the broader design of consumer health IT by characterizing patients' existing health information communication practices with their social network members. This qualitative study took place between 2010 and 2012 in a Midwestern city. Eighteen patients with chronic conditions participated in a semi-structured interview that was analyzed using qualitative content analysis and descriptive statistics. Emphasis was placed on recruiting a sample representing diverse cultural groups and including participants of low socioeconomic status. Participants' social networks included a wide range of individuals, spanning biological relatives, divinities, and second-degree relationships. Participants' rationales for health information communication reflected seven themes: (1) characteristics and circumstances of the person, (2) characteristics and circumstances of the relationship, (3) structure and composition of the social network, (4) content of the message, (5) orientation of the goal, (6) dimensions of the context, and (7) adaptive practices. This study demonstrates that patients' health information communication practices are multidimensional, engaging individuals beyond formal and informal caregivers and driven by characteristics of their personal lives and larger social contexts in addition to their health problem. New models of consumer health IT must be created to better align with the realities of patients' communication routines. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

Preparation, validation and user-testing of pictogram-based patient information leaflets for hemodialysis patients.

Science.gov (United States)

Mateti, Uday Venkat; Nagappa, Anantha Naik; Attur, Ravindra Prabhu; Bairy, Manohar; Nagaraju, Shankar Prasad; Mallayasamy, Surulivelrajan; Vilakkathala, Rajesh; Guddattu, Vasudev; Balkrishnan, Rajesh

2015-11-01

Patient information leaflets are universally-accepted resources to educate the patients/users about their medications, disease and lifestyle modification. The objective of the study was to prepare, validate and perform user-testing of pictogram-based patient information leaflets (P-PILs) among hemodialysis (HD) patients. The P-PILs are prepared by referring to the primary, secondary and tertiary resources. The content and pictograms of the leaflet have been validated by an expert committee consisting of three nephrologists and two academic pharmacists. The Baker Able Leaflet Design has been applied to develop the layout and design of the P-PILs. Quasi-experimental pre- and post-test design without control group was conducted on 81 HD patients for user-testing of P-PILs. The mean Baker Able Leaflet Design assessment score for English version of the leaflet was 28, and 26 for Kannada version. The overall user-testing knowledge assessment mean scores were observed to have significantly improved from 44.25 to 69.62 with p value information leaflets can be considered an effective educational tool for HD patients.

Wikis to facilitate patient participation in developing information leaflets: first experiences

NARCIS (Netherlands)

Belt, T.H. van de; Faber, M.J.; Knijnenburg, J.M.; Duijnhoven, N.T.L. van; Nelen, W.L.D.M.; Kremer, J.A.M.

2014-01-01

OBJECTIVE: Although patients have gained a wealth of experienced based knowledge they are usually not involved in the development of patient information. We sought to determine the technical feasibility of wikis in generating dynamic patient information leaflets with participation from patients and

Helping Patients to Make Informed Decisions : The PARE Guide to Disseminate EULAR Recommendations Among Patients

NARCIS (Netherlands)

de Wit, M.; Bakker, M.; van Bodegom-Vos, L.; Buch, M.; Caeyers, N.; Carluccio, A.; Geenen, R.; Greiff, R.; Glüsing, B.; Gossec, L.; Kent, A.; Poldema, I.; Vliet Vlieland, T.P.M.; Wiek, D.; Schipper, K.

2015-01-01

BACKGROUND Accurate patient information is necessary to make informed health decisions. However, the traditional, scientific wording of professional recommendations is often difficult to understand for lay people. OBJECTIVES To develop a practical guide for patient organizations and health

Qualitative study of patient consent for health information exchange in an HIV clinic.

Science.gov (United States)

Ramos, S Raquel; Bakken, Suzanne

2014-01-01

Health information exchange (HIE) is the secure, electronic transfer and/or accessibility of clinical data among healthcare providers. In the United States (US), the consent process for participation varies state to state. New York State (NYS) mandates written patient consent. The purpose of this study was to examine workflow and perceptions related to obtaining HIE consent in an HIV clinic. We used contextual inquiry to observe the HIE consent-related workflow of four registration clerks for a total of 4 hours on two weekdays and subsequently created a flow chart and sequence model diagram. Clerks were also interviewed and the resulting narrative data were coded into themes. Observational and interview data suggested that patient privacy/confidentiality/trust, high volume workflow, and multiple competing demands affect the patient HIE consent process. Additional qualitative data needs to be gathered from the perspectives of patients and clinicians about the HIE consent process.

Breaching the security of the Kaiser Permanente Internet patient portal: the organizational foundations of information security.

Science.gov (United States)

Collmann, Jeff; Cooper, Ted

2007-01-01

This case study describes and analyzes a breach of the confidentiality and integrity of personally identified health information (e.g. appointment details, answers to patients' questions, medical advice) for over 800 Kaiser Permanente (KP) members through KP Online, a web-enabled health care portal. The authors obtained and analyzed multiple types of qualitative data about this incident including interviews with KP staff, incident reports, root cause analyses, and media reports. Reasons at multiple levels account for the breach, including the architecture of the information system, the motivations of individual staff members, and differences among the subcultures of individual groups within as well as technical and social relations across the Kaiser IT program. None of these reasons could be classified, strictly speaking, as "security violations." This case study, thus, suggests that, to protect sensitive patient information, health care organizations should build safe organizational contexts for complex health information systems in addition to complying with good information security practice and regulations such as the Health Insurance Portability and Accountability Act (HIPAA) of 1996.

Risk factors for an additional port in single-incision laparoscopic cholecystectomy in patients with cholecystitis.

Science.gov (United States)

Araki, Kenichiro; Shirabe, Ken; Watanabe, Akira; Kubo, Norio; Sasaki, Shigeru; Suzuki, Hideki; Asao, Takayuki; Kuwano, Hiroyuki

2017-01-01

Although single-incision laparoscopic cholecystectomy is now widely performed in patients with cholecystitis, some cases require an additional port to complete the procedure. In this study, we focused on risk factor of additional port in this surgery. We performed single-incision cholecystectomy in 75 patients with acute cholecystitis or after cholecystitis between 2010 and 2014 at Gunma University Hospital. Surgical indications followed the TG13 guidelines. Our standard procedure for single-incision cholecystectomy routinely uses two needlescopic devices. We used logistic regression analysis to identify the risk factors associated with use of an additional full-size port (5 or 10 mm). Surgical outcome was acceptable without biliary injury. Nine patients (12.0%) required an additional port, and one patient (1.3%) required conversion to open cholecystectomy because of severe adhesions around the cystic duct and common bile duct. In multivariate analysis, high C-reactive protein (CRP) values (>7.0 mg/dl) during cholecystitis attacks were significantly correlated with the need for an additional port (P = 0.009), with a sensitivity of 55.6%, specificity of 98.5%, and accuracy of 93.3%. This study indicated that the severe inflammation indicated by high CRP values during cholecystitis attacks predicts the need for an additional port. J. Med. Invest. 64: 245-249, August, 2017.

Danglers in Patient Information Leaflets and Technical Manuals

DEFF Research Database (Denmark)

Køhler Simonsen, Henrik

2014-01-01

in fact been proved. The analysis and the discussion showed that dangling participles are not very frequent in PILs, but much more common in technical manuals. The data showed that there were no “ludicrous” danglers,(see Matthews and Matthews 2008:146), in PILcorp. However, the analysis showed that both......Dangling participles and other types of ambiguous or unclear sentence constructions in directive and informative medical and technical texts, such as patient information leaflets (PILs) and technical manuals, render instructions unclear and potentially dangerous for the layman reader, i......, and readability on the basis of two corpora: a corpus of PILs (PILcorp) and a corpus of technical manuals (TECHcorp). The hypothesis is that patient information leaflets will contain fewer dangling constructions than technical manuals because of the strict regulations on product information texts including PILs...

Patients' perceptions of information and education for renal replacement therapy: an independent survey by the European Kidney Patients' Federation on information and support on renal replacement therapy.

Directory of Open Access Journals (Sweden)

Wim Van Biesen

Full Text Available Selection of an appropriate renal replacement modality is of utmost importance for patients with end stage renal disease. Previous studies showed provision of information to and free modality choice by patients to be suboptimal. Therefore, the European Kidney Patients' Federation (CEAPIR explored European patients' perceptions regarding information, education and involvement on the modality selection process.CEAPIR developed a survey, which was disseminated by the national kidney patient organisations in Europe.In total, 3867 patients from 36 countries completed the survey. Respondents were either on in-centre haemodialysis (53% or had a functioning graft (38% at the time of survey. The majority (78% evaluated the general information about kidney disease and treatment as helpful, but 39% did not recall being told about alternative treatment options than their current one. Respondents were more often satisfied with information provided on in-centre haemodialysis (90% and transplantation (87% than with information provided on peritoneal dialysis (79% or home haemodialysis (61%, and were more satisfied with information from health care professionals vs other sources such as social media. Most (75% felt they had been involved in treatment selection, 29% perceived they had no free choice. Involvement in modality selection was associated with enhanced satisfaction with treatment (OR 3.13; 95% CI 2.72-3.60. Many respondents (64% could not remember receiving education on how to manage their kidney disease in daily life. Perceptions on information seem to differ between countries.Kidney patients reported to be overall satisfied with the information they received on their disease and treatment, although information seemed mostly to have been focused on one modality. Patients involved in modality selection were more satisfied with their treatment. However, in the perception of the patients, the freedom to choose an alternative modality showed room for

Sensitization to Food Additives in Patients with Allergy: A Study Based on Skin Test and Open Oral Challenge.

Science.gov (United States)

Moghtaderi, Mozhgan; Hejrati, Zinatosadat; Dehghani, Zahra; Dehghani, Faranak; Kolahi, Niloofar

2016-06-01

There has been a great increase in the consumption of various food additives in recent years. The purpose of this study was to identify the incidence of sensitization to food additives by using skin prick test in patients with allergy and to determine the concordance rate between positive skin tests and oral challenge in hypersensitivity to additives. This cross-sectional study included 125 (female 71, male 54) patients aged 2-76 years with allergy and 100 healthy individuals. Skin tests were performed in both patient and control groups with 25 fresh food additives. Among patients with allergy, 22.4% showed positive skin test at least to one of the applied materials. Skin test was negative to all tested food additives in control group. Oral food challenge was done in 28 patients with positive skin test, in whom 9 patients showed reaction to culprit (Concordance rate=32.1%). The present study suggested that about one-third of allergic patients with positive reaction to food additives showed positive oral challenge; it may be considered the potential utility of skin test to identify the role of food additives in patients with allergy.

Information needs among adolescent bariatric surgery patients and their caregivers.

Science.gov (United States)

Schneider, Nicole M; Tully, Carrie B; Washington, Gia A; Price, Karin L

2016-05-01

Bariatric surgery is an invasive medical treatment for morbid obesity that requires behavioral maintenance for physical success. Patient knowledge, motivation, and adherence are important factors in optimizing results. The purpose of the present study was to identify perceived informational gaps of adolescent and young adult bariatric surgery patients with morbid obesity (body mass index≥40 kg/m(2)). This study took place in a pediatric tertiary care academic medical center. Thirty-one adolescents/young adults who had undergone Roux-en-Y gastric bypass surgery at the authors' institution were recruited to complete questionnaires at their postsurgical visits (≥3 months postsurgery). Seventeen caregivers also participated in this study. The questionnaire used in the present study prompted patients and caregivers to reflect on information they wish they had known before surgery; questionnaire items included multiple choice and open-ended questions. Participants indicated that their informational needs were generally well met before surgery, although there were more needs noted by patients than by caregivers. Adolescent/young adult participants expressed a desire to have had more information about the necessity of taking vitamins daily and about having more gas. An association between informational needs and satisfaction was also found. Qualitative data revealed the importance of conveying cognitive-behavioral aspects of surgery to families (e.g., adherence, motivation). Despite most patients and caregivers being satisfied with the adolescent bariatric surgery program at the authors' institution, informational gaps exist. Teen-friendly ways to disseminate information would be helpful in influencing patients' satisfaction. Copyright © 2016 American Society for Bariatric Surgery. Published by Elsevier Inc. All rights reserved.

Information needs of cancer patients: Validation of the Greek Cassileth's Information Styles Questionnaire.

Science.gov (United States)

Alamanou, G Despoina; Balokas, A Sotirios; Fotos, V Nikolaos; Patiraki, Elisabeth; Brokalaki, Hero

2016-02-01

The aim of this study was to validate the translated in Greek Cassileth's Information Styles Questionnaire (ISQ). It was a cross-sectional study. The sample consisted of one hundred and nine adult patients diagnosed with cancer, attending the oncology outpatient department (outpatients) or being hospitalized (inpatients), from January 2013 to September 2013, in one general hospital in Athens. Two instruments were used: The Control Preference Scale (CPS), an assessment tool to measure decision-making preferences of cancer patients and ISQ to assess the information needs of patients. Exploratory factor analysis (EFA) was carried out to evaluate construct validity of the ISQ. The internal consistency of subscales was analyzed with Cronbach's alpha and the association of demographics and clinical variables with the ISQ was explored using linear regression analysis. Sixty one (56%) patients were males. The mean age was 65.5 (SD = 11.9) years. Two dimensions of the ISQ were revealed. Cronbach's alpha was 0.92 for "Disease and treatment" dimension (12 of 17 items of the questionnaire) and 0.89 for "Psychological" dimension (5 of 17 items of the questionnaire). Statistical analysis showed that the patients' preferred decision making roles were associated with the ISQ dimensions. Also, age, sex, diagnosis, educational level and the existence of metastasis were associated with the score of "Disease and treatment" dimension. All the scales of ISQ, exceeded the minimum reliability standard of 0.70. The results showed that the Greek ISQ is a reliable and valid tool for identifying the information needs of cancer patients. Copyright © 2015 Elsevier Ltd. All rights reserved.

Patient information leaflets: informing or frightening? A focus group study exploring patients' emotional reactions and subsequent behavior towards package leaflets of commonly prescribed medications in family practices.

Science.gov (United States)

Herber, Oliver Rudolf; Gies, Verena; Schwappach, David; Thürmann, Petra; Wilm, Stefan

2014-10-02

The purpose of patient information leaflets (PILs) is to inform patients about the administration, precautions and potential side effects of their prescribed medication. Despite European Commission guidelines aiming at increasing readability and comprehension of PILs little is known about the potential risk information has on patients. This article explores patients' reactions and subsequent behavior towards risk information conveyed in PILs of commonly prescribed drugs by general practitioners (GPs) for the treatment of Type 2 diabetes, hypertension or hypercholesterolemia; the most frequent cause for consultations in family practices in Germany. We conducted six focus groups comprising 35 patients which were recruited in GP practices. Transcripts were read and coded for themes; categories were created by abstracting data and further refined into a coding framework. Three interrelated categories are presented: (i) The vast amount of side effects and drug interactions commonly described in PILs provoke various emotional reactions in patients which (ii) lead to specific patient behavior of which (iii) consulting the GP for assistance is among the most common. Findings show that current description of potential risk information caused feelings of fear and anxiety in the reader resulting in undesirable behavioral reactions. Future PILs need to convey potential risk information in a language that is less frightening while retaining the information content required to make informed decisions about the prescribed medication. Thus, during the production process greater emphasis needs to be placed on testing the degree of emotional arousal provoked in patients when reading risk information to allow them to undertake a benefit-risk-assessment of their medication that is based on rational rather than emotional (fearful) reactions.

Sexual health-related information delivery - are patient information leaflets still relevant?

Science.gov (United States)

Varma, Rick; Chung, Charles; Townsend, Amanda; Power, Melissa

2016-06-01

Background Patient information leaflets (PILs) are widely utilised within publically funded sexual health clinics to deliver sexual health-related information (SHRI); however, their continued value to clients in the era of social media is unclear. This study aimed to evaluate clients' opinions on three newly developed PILs and examine client views on other forms of SHRI delivery. An anonymous self-administered questionnaire was completed by clients attending the Western Sydney Sexual Health Centre (WSSHC) in 2012. High-risk population (HRP) vs non-high-risk population (non-HRP) views on PILs vs alternative methods of SHRI delivery were analysed by using Mann-Whitney U, Wilcoxon, McNemar and χ(2) tests. Over half (210/315; (67%)) of the consecutive clients from a culturally diverse population completed the survey. Sex workers (SW) and young people (YP) were significantly likely to have a high school education than non-HRP (PInformation Link (SHIL), a state-wide website and telephone line, were ranked significantly higher as a means of SHRI delivery on a Likert scale than newer technologies including Facebook (P<0.001), email (P<0.001), mobile phone applications (P<0.001), TVs in waiting rooms (P<0.001) and business cards (P<0.001). There was no significant difference in opinion between HRP and non-HRP. This study provides evidence for the ongoing use of PILs to deliver SHRI to clinic attendees, in conjunction with other forms of SHRI delivery such as websites and SHIL. Novel methods may require additional consumer engagement and a greater understanding of specific population's needs.

Communicating with older cancer patients: impact on information recall

NARCIS (Netherlands)

Jansen, J.

2009-01-01

The central aim of this thesis was to unravel the relationship between patient characteristics, communication between patient and clinician, and subsequent patient information recall in the context of medical consultations with older cancer patients. Chapter 2 reviewed the literature to explore age

Does Health Information in Mass Media Help or Hurt Patients? Investigation of Potential Negative Influence of Mass Media Health Information on Patients' Beliefs and Medication Regimen Adherence.

Science.gov (United States)

Im, Heewon; Huh, Jisu

2017-03-01

As an important public health issue, patient medication non-adherence has drawn much attention, but research on the impact of mass media as an information source on patient medication adherence has been scant. Given that mass media often provide confusing and contradicting information regarding health/medical issues, this study examined the potential negative influence of exposure to health information in mass media on patients' beliefs about their illnesses and medications, and medication adherence, in comparison with the effects of exposure to another primary medication information source, physicians. Survey data obtained from patients on blood thinner regimens revealed that the frequency of exposure to health information in mass media was negatively related to accuracy of patients' beliefs about their medication benefits and patient medication adherence. On the other hand, frequency of visits with physicians was positively associated with patients' beliefs about their medication benefits but had no significant relation to medication regimen adherence. The implications of the study findings are discussed, and methodological limitations and suggestion for future research are presented.

The value of private patient information in the physician-patient relationship: a game-theoretic account.

Science.gov (United States)

De Jaegher, Kris

2012-01-01

This paper presents a game-theoretical model of the physician-patient relationship. There is a conflict of interests between physician and patient, in that the physician prefers the patient to always obtain a particular treatment, even if the patient would not consider this treatment in his interest. The patient obtains imperfect cues of whether or not he needs the treatment. The effect of an increase in the quality of the patient's private information is studied, in the form of an improvement in the quality of his cues. It is shown that when the patient's information improves in this sense, he may either become better off or worse off. The precise circumstances under which either result is obtained are derived.

Informed use of patients' records on trusted health care services.

Science.gov (United States)

Sahama, Tony; Miller, Evonne

2011-01-01

Health care is an information-intensive business. Sharing information in health care processes is a smart use of data enabling informed decision-making whilst ensuring. the privacy and security of patient information. To achieve this, we propose data encryption techniques embedded Information Accountability Framework (IAF) that establishes transitions of the technological concept, thus enabling understanding of shared responsibility, accessibility, and efficient cost effective informed decisions between health care professionals and patients. The IAF results reveal possibilities of efficient informed medical decision making and minimisation of medical errors. Of achieving this will require significant cultural changes and research synergies to ensure the sustainability, acceptability and durability of the IAF.

Rehabilitation of stroke patients with apraxia: the role of additional cognitive and motor impairments.

Science.gov (United States)

van Heugten, C M; Dekker, J; Deelman, B G; Stehmann-Saris, J C; Kinebanian, A

2000-08-15

The present study investigated which additional cognitive and motor impairments were present in stroke patients with apraxia and which of these factors influenced the effects of treatment. A group of 33 patients with apraxia were treated according to the guidelines of a therapy programme based on teaching patients strategies to compensate for the presence of apraxia. Patients were treated at occupational therapy departments in general hospitals, rehabilitation centres and nursing homes. The outcome of the strategy training was studied in a pre-post test design; measurements were conducted at baseline and after 12 weeks of therapy. The pretreatment scores of the patients with apraxia were compared to normscores and scores of a control group of patients without apraxia (n = 36) to investigate which impairments are present. The following variables were analysed in order to determine which factors influence outcome: additional neuropsychological deficits (comprehension of language, cognitive impairments due to dementia, neglect and short term memory), level of motor functioning, severity of apraxia and performance on activities of daily living (ADL), and some relevant patient characteristics (gender, age, type of stroke, time since stroke, and location of treatment). The results showed that the presence of apraxia is associated with the presence of additional cognitive and motor impairments. The successful outcome of strategy training was not negatively influenced by cognitive comorbidity. The outcome seemed to be more prominent in patients who were more severely impaired at the start of rehabilitation in terms of the degree of motor impairments, the severity of apraxia and the initial ADL dependence. The ADL observations, however, displayed a ceiling effect, which was taken into account in discussing the results. Demographic variables, especially age, did not predict the outcome of treatment. We suggest that the effect of this training is stronger in more severely

Oncologists' non-verbal behavior and analog patients' recall of information.

Science.gov (United States)

Hillen, Marij A; de Haes, Hanneke C J M; van Tienhoven, Geertjan; van Laarhoven, Hanneke W M; van Weert, Julia C M; Vermeulen, Daniëlle M; Smets, Ellen M A

2016-06-01

Background Information in oncological consultations is often excessive. Those patients who better recall information are more satisfied, less anxious and more adherent. Optimal recall may be enhanced by the oncologist's non-verbal communication. We tested the influence of three non-verbal behaviors, i.e. eye contact, body posture and smiling, on patients' recall of information and perceived friendliness of the oncologist. Moreover, the influence of patient characteristics on recall was examined, both directly or as a moderator of non-verbal communication. Material and methods Non-verbal communication of an oncologist was experimentally varied using video vignettes. In total 194 breast cancer patients/survivors and healthy women participated as 'analog patients', viewing a randomly selected video version while imagining themselves in the role of the patient. Directly after viewing, they evaluated the oncologist. From 24 to 48 hours later, participants' passive recall, i.e. recognition, and free recall of information provided by the oncologist were assessed. Results Participants' recognition was higher if the oncologist maintained more consistent eye contact (β = 0.17). More eye contact and smiling led to a perception of the oncologist as more friendly. Body posture and smiling did not significantly influence recall. Older age predicted significantly worse recognition (β = -0.28) and free recall (β = -0.34) of information. Conclusion Oncologists may be able to facilitate their patients' recall functioning through consistent eye contact. This seems particularly relevant for older patients, whose recall is significantly worse. These findings can be used in training, focused on how to maintain eye contact while managing computer tasks.

Readability Assessment of Patient Information about Lymphedema and Its Treatment.

Science.gov (United States)

Seth, Akhil K; Vargas, Christina R; Chuang, Danielle J; Lee, Bernard T

2016-02-01

Patient use of online resources for health information is increasing, and access to appropriately written information has been associated with improved patient satisfaction and overall outcomes. The American Medical Association and the National Institutes of Health recommend that patient materials be written at a sixth-grade reading level. In this study, the authors simulated a patient search of online educational content for lymphedema and evaluated readability. An online search for the term "lymphedema" was performed, and the first 12 hits were identified. User and location filters were disabled and sponsored results were excluded. Patient information from each site was downloaded and formatted into plain text. Readability was assessed using established tests: Coleman-Liau, Flesch-Kincaid, Flesch Reading Ease Index, FORCAST Readability Formula, Fry Graph, Gunning Fog Index, New Dale-Chall Formula, New Fog Count, Raygor Readability Estimate, and Simple Measure of Gobbledygook Readability Formula. There were 152 patient articles downloaded; the overall mean reading level was 12.6. Individual website reading levels ranged from 9.4 (cancer.org) to 16.7 (wikipedia.org). There were 36 articles dedicated to conservative treatments for lymphedema; surgical treatment was mentioned in nine articles across four sites. The average reading level for conservative management was 12.7, compared with 15.6 for surgery (p readability, and surgeons should direct patients to sites appropriate for their level. There is limited information about surgical treatment available on the most popular sites; this information is significantly harder to read than sections on conservative measures.

Measuring cancer patients' reasons for their information preference: construction of the Considerations Concerning Cancer Information (CCCI) questionnaire

NARCIS (Netherlands)

ter Hoeven, Claartje L.; Zandbelt, Linda C.; Fransen, Sanne; de Haes, Hanneke; Oort, Frans; Geijsen, Debby; Koning, Caro; Smets, Ellen

2011-01-01

Objectives: This paper describes the further development and psychometric properties of an instrument to measure cancer patients' reasons to want complete or limited information: the Considerations Concerning Cancer Information questionnaire (CCCI). Understanding cancer patients' reasons to want

Finding phosphorus containing additives in manufactured foods

Directory of Open Access Journals (Sweden)

Lyn Lloyd

2012-06-01

This reflects manufactured foods in NZ and it is likely that these results could be generalized to countries with similar food patterns and supplies. Quantitative data in manufactured foods is unlikely to be available to guide patient choice so qualitative information of where to find P additives can be helpful.

Health-Related Information-Seeking Behaviors and Preferences Among Mexican Patients with Cancer.

Science.gov (United States)

Soto-Perez-de-Celis, Enrique; Perez-Montessoro, Viridiana; Rojo-Castillo, Patricia; Chavarri-Guerra, Yanin

2018-06-01

Understanding the preferred sources of health-related information among patients with cancer is essential for designing successful cancer education and prevention strategies. However, little is known about health-related information-seeking practices among patients living in low- and middle-income countries. We studied the preferred sources of health-related information among Mexican patients with cancer and explored which factors influence these choices. The health-related information-seeking practices among patients with cancer treated at a public hospital in Mexico City were evaluated using questions from the Spanish Version of the Health Information National Trends Survey. The characteristics of patients who sought health-related information, and of those who chose the internet as their preferred source of information, were analyzed. Fisher's exact test and logistic regression were used for statistical analyses. One hundred forty-eight patients answered the survey (median age 60 years, 70% female), of which 88 (59%) had sought for health-related information. On multivariate analysis, the only characteristic associated with lower odds of seeking health-related information was increasing age (OR 0.93, 95% CI 0.90-0.97). Sixty-one respondents (69%) listed the internet as their preferred source of health-related information. On multivariate analysis, only being of the female gender (OR 4.9, 95% CI 1.3-18.3) was related with higher odds of preferring other sources of information over the internet. Among Mexican patients with cancer, the Internet is the most widely used information source. Older age was the characteristic most strongly associated with not seeking health-related information, while being female was strongly associated with preferring other sources of information over the Internet.

Hospitals need to customise care according to patients' differing information-seeking behaviour

DEFF Research Database (Denmark)

Riiskjær, Erik; Ammentorp, Jette; Nielsen, Jørn Flohr

2014-01-01

INTRODUCTION: The aim of the study was to describe how often patients seek information about their disease in connection with contact to a hospital and to elucidate how information-seeking behaviour is related to the patients' perception of this contact. MATERIAL AND METHODS: The study was based...... on patient surveys from the Danish county of Aarhus from 1999 to 2006 including eight public hospitals. The patients' information-seeking behaviour was related to patient characteristics, organisational context and patient perceptions. RESULTS: Among the 75,769 patients who responded, 33.4% had actively...

Characterization of Patient Interest in Provider-Based Consumer Health Information Technology: Survey Study.

Science.gov (United States)

Featherall, Joseph; Lapin, Brittany; Chaitoff, Alexander; Havele, Sonia A; Thompson, Nicolas; Katzan, Irene

2018-04-19

Consumer health information technology can improve patient engagement in their health care and assist in navigating the complexities of health care delivery. However, the consumer health information technology offerings of health systems are often driven by provider rather than patient perspectives and inadequately address patient needs, thus limiting their adoption by patients. Consideration given to patients as stakeholders in the development of such technologies may improve adoption, efficacy, and consumer health information technology resource allocation. The aims of this paper were to measure patient interest in different health system consumer health information technology apps and determine the influence of patient characteristics on consumer health information technology interest. Patients seen at the Cleveland Clinic Neurological Institute were electronically surveyed on their interest in using different consumer health information technology apps. A self-efficacy scale, Patient Health Questionnaire-9 depression screen, and EuroQol 5 dimensions health-related quality of life scale were also completed by patients. Logistic regression was used to determine the influence of patient characteristics on interest in consumer health information technology in the categories of self-management, education, and communication. The majority of 3852 patient respondents had an interest in all technology categories assessed in the survey. The highest interest was in apps that allow patients to ask questions of providers (3476/3852, 90.24%) and to schedule appointments (3211/3839, 83.64%). Patient interest in consumer health information technology was significantly associated with greater depression symptoms, worse quality of life, greater health self-efficacy, and smartphone ownership (Pinformation technology development and their perspectives should consistently guide development efforts. Health systems should consider focusing on consumer health information technologies

Information needs and requirements in patients with brain tumours and their relatives.

Science.gov (United States)

Reinert, Christiane; Rathberger, Katharina; Klinkhammer-Schalke, Monika; Kölbl, Oliver; Proescholdt, Martin; Riemenschneider, Markus J; Schuierer, Gerhard; Hutterer, Markus; Gerken, Michael; Hau, Peter

2018-06-01

Patients with brain tumours face a number of medical and social challenges. Previous studies have shown that these patients and their relatives need a high level of patient-oriented information and counselling. However, these needs are often underestimated. In this single-centre cross-sectional study, we evaluated, for the first time, the information needs of patients with brain tumours and their relatives depending on diagnosis, age and level of education. The participants were interviewed using pre-specified questionnaires. Answers were evaluated descriptively using standard statistical methods. A total of 888 questionnaires were sent out. The return rate was 50.7%. The majority of patients (nP = 103; 59.9%) and a higher proportion of relatives (nR = 103; 72.5%; p = 0.019) wished to receive a maximum of information. The majority (79.7% of patients; 83.1% of relatives) also stated that they preferred a personal, face-to-face meeting as primary source of information. The need for information increased with education (p = 0.015), and decreased with tumour grade (p = 0.025) and age (p = 0.118). Our data indicate that patients with brain tumours and their relatives have high information needs throughout their disease and continuously require information and counselling. Optimal provision of information is based on personal preferences, which needs to be evaluated appropriately. Patient-oriented information and counselling are parts of a successful communication strategy that can improve cancer care significantly.

A quality assessment of patient leaflets on misoprostol induced labour – does written information adhere to international standards for patient involvement and informed consent?

DEFF Research Database (Denmark)

Clausen, Jette Aaroe; Juul, Mette; Rydahl, Eva

Objectives: The need for thorough patient information is increasing as maternity care becomes more medicalised. The aim was to assess the quality of written patient information on labour induction. In most Danish hospitals misoprostol is the first-choice drug for induction in low-risk pregnancies......). Design: Patient leaflets were evaluated according to a validated scoring tool (IPDAS), core elements in The Danish Health Act, and items regarding off-label use and non-registered medication. Two of the authors scored all leaflets independently. Outcome measures: Women’s involvement in decision making......, and information on benefits and harms associated with the treatment, other justifiable treatment options, and non-registered treatment. Results: Generally, the hospitals scored low on the IPDAS checklist. No hospitals encouraged women to consider their preferences. Information on side-effects and adverse outcomes...

Satisfaction with information provided to Danish cancer patients: validation and survey results.

Science.gov (United States)

Ross, Lone; Petersen, Morten Aagaard; Johnsen, Anna Thit; Lundstrøm, Louise Hyldborg; Groenvold, Mogens

2013-11-01

To validate five items (CPWQ-inf) regarding satisfaction with information provided to cancer patients from health care staff, assess the prevalence of dissatisfaction with this information, and identify factors predicting dissatisfaction. The questionnaire was validated by patient-observer agreement and cognitive interviews. The prevalence of dissatisfaction was assessed in a cross-sectional sample of all cancer patients in contact with hospitals during the past year in three Danish counties. The validation showed that the CPWQ performed well. Between 3 and 23% of the 1490 participating patients were dissatisfied with each of the measured aspects of information. The highest level of dissatisfaction was reported regarding the guidance, support and help provided when the diagnosis was given. Younger patients were consistently more dissatisfied than older patients. The brief CPWQ performs well for survey purposes. The survey depicts the heterogeneous patient population encountered by hospital staff and showed that younger patients probably had higher expectations or a higher need for information and that those with more severe diagnoses/prognoses require extra care in providing information. Four brief questions can efficiently assess information needs. With increasing demands for information, a wide range of innovative initiatives is needed. Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.

Managing the unmet psychosocial and information needs of patients with cancer

Directory of Open Access Journals (Sweden)

Kathleen Abrahamson

2010-11-01

Full Text Available Kathleen Abrahamson1, Morgan Durham1, Rebekah Fox21Department of Public Health, Western Kentucky University, Bowling Green, KY, USA; 2Department of Communication, Texas State University, San Marcos, TX, USAAbstract: In this article, we synthesize current literature regarding the unmet needs of cancer patients, with a specific focus on interventions that address psychosocial distress, social support, and information deficits. Research indicates many patients diagnosed with cancer express unmet needs in terms of emotional distress, decision-making support, and practical concerns such as childcare, transportation, and financial assistance. Four types of system-level barriers to the meeting of patient psychosocial and information-based needs emerge from the literature: underidentification of needs due to inadequate assessment, time constraints on cancer care providers, lack of adequate reimbursement for psychosocial and information services, and barriers related to communication of disease-related information. There is also evidence that unmet need, especially unmet information need, is related to the level of patient health literacy. Patient empowerment through the resolution of unmet needs increases patient participation in care, and is especially crucial in regards to understanding risks and benefits of treatment. There is evidence that some interventions are effective for some patients, and that even relatively simple interventions can reduce psychosocial and information-based needs. The challenge is therefore to discover which intervention will be effective for each individual patient, and to attain the skills and resources necessary to intervene appropriately.Keywords: cancer, unmet need, health literacy, intervention

Remote patient monitoring: Information reliability challenges

NARCIS (Netherlands)

Petkovic, M.

2009-01-01

An increasing number of extramural applications in the personal healthcare domain pose new challenges regarding the security of medical data. In this paper, we focus on remote patient monitoring systems and the issues around information reliability. In these systems medical data is not collected by

Development of Information System for Patients with Cleft Lip and Palate undergoing Operation.

Science.gov (United States)

Augsornwan, Darawan; Pattangtanang, Pantamanas; Surakunprapha, Palakorn

2015-08-01

Srinagarind Hospital has 150-200 patients with cleft lip and palate each year. When patients are admitted to hospital for surgery patients and family feel they are in a crisis of life, they feel fear anxiety and need to know about how to take care of wound, they worry if patient will feel pain, how to feed patients and many things about patients. Information is very important for patients/family to prevent complications and help their decision process, decrease parents stress and encourage better co-operation. To develop information system for patients with cleft lip-palate undergoing operation. This is an action research divided into 3 phases. Phase 1 Situation review: in this phase we interview, nursing care observation, and review nursing documents about the information giving. Phase 2 Develop information system: focus groups, for discussion about what nurses can do to develop the system to give information to patients/parents. Phase 3 evaluation: by interviewing 61 parents using the structure questionnaire. 100 percent of patients/parents received information but some items were not received. Patients/parents satisfaction was 94.9 percent, no complications. The information system development provides optimal care for patients and family with cleft lip and palate, but needs to improve some techniques or tools to give more information and evaluate further the nursing outcome after.

Engaging the Voice of Patients Affected by Gender-Based Violence: Informing Practice and Policy.

Science.gov (United States)

Lewis-O'Connor, Annie; Chadwick, Mardi

2015-01-01

Evidence regarding the benefits, opportunities, and risks associated with providing health care to patients experiencing gender-based violence (GBV) and, moreover, their satisfaction with health care services is sparse. Using a patient- and trauma-informed relationship-based framework, survivors of GBV who were referred for follow-up care were asked to participate in a quality improvement (QI) initiative in an effort to understand their perspectives of receiving healthcare services. Patients were asked to answer three open-ended questions in regard to their healthcare experience. Individuals who were eligible for evidence collection after sexual assault (<5 days) were asked two additional questions. Of the 353 women and six men (359) referred to the C.A.R.E. (Coordinated Approach to Recovery and Empowerment) Clinic, 327 patients were contacted. Of the participants, 24% (86) had a mental health diagnosis; 41% (145) reported their incident to the police; 8% (28) had comorbidities of substance abuse, mental health, and/or homelessness; and 33% (118) of the incidents involved alcohol or drugs. Most of the patients stated that they were well cared for and felt safe during their visit. However, many reported "long waits," "disjointed," "chaotic," "too many" providers, "conflicting" and "miss-information," and "confusion" about what to do after their acute care visit. Over half (59%) did not report incident to the police. Some reported regrets with reporting to the police (16%) and regrets in having evidence collection (15%). Of the patients who did not have evidence collected (47), none expressed regret over choosing not to have evidence collected. Five patients with mental health problems were hospitalized within 5 days of their emergency department visit for suicidal thoughts. A number of opportunities to improve the healthcare response were identified. Patients affected by GBV require an improved coordinated and trauma-informed approach. Explicit consent related to

Patient information in phase I trials

DEFF Research Database (Denmark)

Gad, Katrine Toubro; Lassen, Ulrik; Mau-Sørensen, Morten

2018-01-01

for systematic reviews and meta‐analyses.” A systematic search was performed in the PubMed, Embase, and PsycInfo databases, supplemented by a search for unpublished literature. Results: We identified 37 studies for inclusion in this review. Patients' decisions to participate in a phase 1 trial were influenced....... Studies performing analyses of the dialog demonstrated that the language of the physicians was incomplete. The relatives' perceptions of such information remain unexplored. Most studies had a comprehensive risk of bias. Conclusions: Patients' decisions regarding participation in phase 1 trials are based...

Understanding patients' oral health information needs: Findings of a survey on use of patient portals in dentistry.

Science.gov (United States)

Shimpi, Neel; Schwei, Kelsey; Cooper, Sara; Chyou, Po-Huang; Acharya, Amit

2018-03-01

Patient engagement through web-based patient health portals (PHP) can offer important benefits to patients and provider organizations by improving both quality and access to care. The authors studied the most relevant, patient-identified, oral health information available in the PHP to inform their assessment of patient-centered care. The authors distributed a 17-question, paper-based survey to patients aged 18 through 80 years in the waiting rooms of 8 dental centers in Wisconsin. Descriptive statistics, along with differences in percentages by sex, age group, and metropolitan status were reported using the χ 2 and Wilcoxon rank sum test. A 75% (813 of 1,090) response rate was achieved. More than one-third of patients selected access to previous dental procedures, dental history, routine dental appointment reminders, date of last dental visit, tooth chart, date of last full-mouth radiograph, and dental problem list via the PHP. Patients identified and recommended incorporation of different types of oral health data for access via the PHP as vital to strengthening the communication between patients and dental professionals. Incorporating patient-identified oral health information in the PHP will inform strategies for improving patient engagement, strengthen patient-provider communication, and offer a venue for increasing oral health literacy and awareness. Copyright © 2018 American Dental Association. Published by Elsevier Inc. All rights reserved.

Shared decision-making and providing information among newly diagnosed patients with hematological malignancies and their informal caregivers: Not "one-size-fits-all".

Science.gov (United States)

Rood, J A J; Nauta, I H; Witte, B I; Stam, F; van Zuuren, F J; Manenschijn, A; Huijgens, P C; Verdonck-de Leeuw, I M; Zweegman, S

2017-12-01

To optimize personalized medicine for patients with hematological malignancies (HM), we find that knowledge on patient preferences with regard to information provision and shared decision-making (SDM) is of the utmost importance. The aim of this study was to investigate the SDM preference and the satisfaction with and need for information among newly diagnosed HM patients and their informal caregivers, in relation to sociodemographic and clinical factors, cognitive coping style, and health related quality of life. Newly diagnosed patients and their caregivers were asked to complete the Hematology Information Needs Questionnaire, the Information Satisfaction Questionnaire, and the Threatening Medical Situations Inventory. Medical records were consulted to retrieve sociodemographic and clinical factors and comorbidity by means of the ACE-27. Questionnaires were completed by 138 patients and 95 caregivers. Shared decision-making was preferred by the majority of patients (75%) and caregivers (88%), especially patients treated with curative intent (OR = 2.7, P = .041), and patients (OR = 1.2, P information was related to MCCS (P = .012), and need for specific information was related to MCCS and several clinical factors. Importantly, dissatisfaction with the information they received was reported by a third of the patients and caregivers, especially patients who wanted SDM (χ 2  = 7.3, P = .007), and patients with a higher MCCS (OR = 0.94, P = .038). The majority of HM patients want to be involved in SDM, but the received information is not sufficient. Patient-tailored information is urgently needed, to improve SDM. Copyright © 2017 John Wiley & Sons, Ltd.

[Informed consent process in clinical trials: Insights of researchers, patients and general practitioners].

Science.gov (United States)

Giménez, Nuria; Pedrazas, David; Redondo, Susana; Quintana, Salvador

2016-10-01

Adequate information for patients and respect for their autonomy are mandatory in research. This article examined insights of researchers, patients and general practitioners (GPs) on the informed consent process in clinical trials, and the role of the GP. A cross-sectional study using three questionnaires, informed consent reviews, medical records, and hospital discharge reports. GPs, researchers and patients involved in clinical trials. Included, 504 GPs, 108 researchers, and 71 patients. Consulting the GP was recommended in 50% of the informed consents. Participation in clinical trials was shown in 33% of the medical records and 3% of the hospital discharge reports. GPs scored 3.54 points (on a 1-10 scale) on the assessment of the information received by the principal investigator. The readability of the informed consent sheet was rated 8.03 points by researchers, and the understanding was rated 7.68 points by patients. Patient satisfaction was positively associated with more time for reflection. GPs were not satisfied with the information received on the participation of patients under their in clinical trials. Researchers were satisfied with the information they offered to patients, and were aware of the need to improve the information GPs received. Patients collaborated greatly towards biomedical research, expressed satisfaction with the overall process, and minimised the difficulties associated with participation. Copyright © 2015 Elsevier España, S.L.U. All rights reserved.

Information disclosure in clinical informed consent: "reasonable" patient's perception of norm in high-context communication culture.

Science.gov (United States)

Hammami, Muhammad M; Al-Jawarneh, Yussuf; Hammami, Muhammad B; Al Qadire, Mohammad

2014-01-10

The current doctrine of informed consent for clinical care has been developed in cultures characterized by low-context communication and monitoring-style coping. There are scarce empirical data on patients' norm perception of information disclosure in other cultures. We surveyed 470 adults who were planning to undergo or had recently undergone a written informed consent-requiring procedure in a tertiary healthcare hospital in Saudi Arabia. Perceptions of norm and current practice were explored using a 5-point Likert scale (1 = strongly agree with disclosure) and 30 information items in 7 domains: practitioners' details, benefits, risks, complications' management, available alternatives, procedure's description, and post-procedure's issues. Respondents' mean (SD) age was 38.4 (12.5); 50.2% were males, 57.2% had ≥ college education, and 37.9% had undergone a procedure. According to norm perception, strongly agree/agree responses ranged from 98.0% (major benefits) to 50.5% (assistant/trainee's name). Overall, items related to benefits and post-procedure's issues were ranked better (more agreeable) than items related to risks and available alternatives. Ranking scores were better in post-procedure respondents for 4 (13.3%) items (p s name) to 13.9% (lead practitioner's training place), ranking scores were worse for all items compared to norm perception (p norm, 2) the focus of the desired information is closer to benefits and post-procedure's issues than risks and available alternatives, 3) male, post-procedure, and older patients are in favor of more information disclosure, 4) male, older, and more educated patients may be particularly dissatisfied with current information disclosure. The focus and extent of information disclosure for clinical informed consent may need to be adjusted if a "reasonable" patient's standard is to be met.

Information flow to assess cardiorespiratory interactions in patients on weaning trials.

Science.gov (United States)

Vallverdú, M; Tibaduisa, O; Clariá, F; Hoyer, D; Giraldo, B; Benito, S; Caminal, P

2006-01-01

Nonlinear processes of the autonomic nervous system (ANS) can produce breath-to-breath variability in the pattern of breathing. In order to provide assess to these nonlinear processes, nonlinear statistical dependencies between heart rate variability and respiratory pattern variability are analyzed. In this way, auto-mutual information and cross-mutual information concepts are applied. This information flow analysis is presented as a short-term non linear analysis method to investigate the information flow interactions in patients on weaning trials. 78 patients from mechanical ventilation were studied: Group A of 28 patients that failed to maintain spontaneous breathing and were reconnected; Group B of 50 patients with successful trials. The results show lower complexity with an increase of information flow in group A than in group B. Furthermore, a more (weakly) coupled nonlinear oscillator behavior is observed in the series of group A than in B.

Automated Classification of Consumer Health Information Needs in Patient Portal Messages.

Science.gov (United States)

Cronin, Robert M; Fabbri, Daniel; Denny, Joshua C; Jackson, Gretchen Purcell

2015-01-01

Patients have diverse health information needs, and secure messaging through patient portals is an emerging means by which such needs are expressed and met. As patient portal adoption increases, growing volumes of secure messages may burden healthcare providers. Automated classification could expedite portal message triage and answering. We created four automated classifiers based on word content and natural language processing techniques to identify health information needs in 1000 patient-generated portal messages. Logistic regression and random forest classifiers detected single information needs well, with area under the curves of 0.804-0.914. A logistic regression classifier accurately found the set of needs within a message, with a Jaccard index of 0.859 (95% Confidence Interval: (0.847, 0.871)). Automated classification of consumer health information needs expressed in patient portal messages is feasible and may allow direct linking to relevant resources or creation of institutional resources for commonly expressed needs.

Evaluation of the Quality of Online Information for Patients with Rare Cancers: Thyroid Cancer.

Science.gov (United States)

Kuenzel, Ulrike; Monga Sindeu, Tabea; Schroth, Sarah; Huebner, Jutta; Herth, Natalie

2017-01-24

The Internet offers an easy and quick access to a vast amount of patient information. However, several studies point to the poor quality of many websites and the resulting hazards of false information. The aim of this study was to assess quality of information on thyroid cancer. A patients' search for information about thyroid cancer on German websites was simulated using the search engine Google and the patient portal "Patienten-Information.de". The websites were assessed using a standardized instrument with formal and content aspects from the German Cancer Society. Supporting the results of prior studies that analysed patient information on the Internet, the data showed that the quality of patient information on thyroid cancer is highly heterogeneous depending on the website providers. The majority of website providers are represented by media and health providers other than health insurances, practices and professionals offering patient information of relatively poor quality. Moreover, most websites offer patient information of low-quality content. Only a few trustworthy, high-quality websites exist. Especially Google, a common search engine, focuses more on the dissemination of information than on quality aspects. In order to improve the patient information from the Internet, the visibility of high-quality websites must be improved. For that, education programs to improve patients' eHealth literacy are needed. A quick and easy evaluation tool for online information suited for patients should be implemented, and patients should be taught to integrate such a tool into their research process.

Public judgments of information in a diazepam patient package insert.

Science.gov (United States)

Fisher, S; Mansbridge, B; Lankford, D A

1982-06-01

As part of a larger study of the effects of giving patients written take-home information with prescription medications, a "patient package insert" (PPI) for diazepam was prepared based on content determined by "experts." This report compares the experts' judgments of what information should be included with judgments obtained from the public. Information judged to be most important for inclusion in a PPI was identified by having subjects sort cards containing facts about diazepam. Subjects who had previously used diazepam were no different in their judgments than inexperienced subjects. In general, there was a high degree of concordance between public and expert judgments and also a remarkably strong consensus across very different demographic samples. In those few instances of disagreement, the public attached even greater importance to warnings and "bad news" about diazepam than to information providing reassurances, benign general education, and "good news." To what extent patients would effectively use this information--whether conveyed by PPIs or alternative educational routes--must await empirical evaluation.

The effect of the proximity of patients' nearest alternative hospital on their intention to search for information on hospital quality.

Science.gov (United States)

Victoor, Aafke; Rademakers, Jany; Reitsma-van Rooijen, Margreet; de Jong, Judith; Delnoij, Diana; Friele, Roland

2014-01-01

In several countries, patients are encouraged to choose health care providers. Simultaneously, there is a tendency towards the concentration of health care, which might lessen the choice. Our aim was to assess the impact of patients' distances from their providers on their information-seeking, which is one element of choice. Two thousand members of the Dutch Health Care Consumer Panel were sent a questionnaire that included a question on whether they would search for information about hospitals to inform their choice. Distances from providers were obtained from a database that includes the distances between all postcodes in the Netherlands. To assess the influence of distance on information-seeking, logistic regression analyses were conducted. There was a good response (75%). Older, less educated respondents were less inclined to seek information when their nearest alternative was located further away (OR 0.85; 95% CI: 0.79-0.92), and younger, more educated respondents were more inclined to search in this situation (OR 1.11; 95% CI: 1.01-1.22). As fewer older, less educated patients would search for information to guide their choice, they might not opt for the best hospital. Additionally, the need for providers to compete for the patronage of these patients might be lessened.

Accessing wound-care information on the Internet: the implications for patients.

Science.gov (United States)

Bovill, E S; Hormbrey, E; Gillespie, P H; Banwell, P E

2001-02-01

The Internet and the World Wide Web have revolutionised communication and provide a unique forum for the exchange of information. It has been proposed that the Internet has given the public more access to medical information resources and improved patient education. This study assessed the impact of the Internet on the availability of information on wound care management. The search phrases 'wound care', 'wound healing' and 'wounds' were analysed using a powerful Metacrawler search engine (www.go2net.com). Web site access was classified according to the target audience (wound-care specialists, other health professionals, patients) and the author (societies, institutions or commercial companies). The largest proportion of web sites were commercially based (32%). Of the total number, 23% specifically targeted patients, mostly by advertising. Only 20% were aimed at wound specialists. Extensive surfing was required to obtain wound-care information, and objective information sites were under-represented. Regulated, easily accessible, objective information sites on wound-healing topics are needed for improved patient education and to balance the existing commercial bias.

Systematic Review of Quality of Patient Information on Liposuction in the Internet

Science.gov (United States)

Zuk, Grzegorz; Eylert, Gertraud; Raptis, Dimitri Aristotle; Guggenheim, Merlin; Shafighi, Maziar

2016-01-01

Background: A large number of patients who are interested in esthetic surgery actively search the Internet, which represents nowadays the first source of information. However, the quality of information available in the Internet on liposuction is currently unknown. The aim of this study was to assess the quality of patient information on liposuction available in the Internet. Methods: The quantitative and qualitative assessment of Web sites was based on a modified Ensuring Quality Information for Patients tool (36 items). Five hundred Web sites were identified by the most popular web search engines. Results: Two hundred forty-five Web sites were assessed after duplicates and irrelevant sources were excluded. Only 72 (29%) Web sites addressed >16 items, and scores tended to be higher for professional societies, portals, patient groups, health departments, and academic centers than for Web sites developed by physicians, respectively. The Ensuring Quality Information for Patients score achieved by Web sites ranged between 8 and 29 of total 36 points, with a median value of 16 points (interquartile range, 14–18). The top 10 Web sites with the highest scores were identified. Conclusions: The quality of patient information on liposuction available in the Internet is poor, and existing Web sites show substantial shortcomings. There is an urgent need for improvement in offering superior quality information on liposuction for patients intending to undergo this procedure. PMID:27482498

Automated Classification of Consumer Health Information Needs in Patient Portal Messages

Science.gov (United States)

Cronin, Robert M.; Fabbri, Daniel; Denny, Joshua C.; Jackson, Gretchen Purcell

2015-01-01

Patients have diverse health information needs, and secure messaging through patient portals is an emerging means by which such needs are expressed and met. As patient portal adoption increases, growing volumes of secure messages may burden healthcare providers. Automated classification could expedite portal message triage and answering. We created four automated classifiers based on word content and natural language processing techniques to identify health information needs in 1000 patient-generated portal messages. Logistic regression and random forest classifiers detected single information needs well, with area under the curves of 0.804–0.914. A logistic regression classifier accurately found the set of needs within a message, with a Jaccard index of 0.859 (95% Confidence Interval: (0.847, 0.871)). Automated classification of consumer health information needs expressed in patient portal messages is feasible and may allow direct linking to relevant resources or creation of institutional resources for commonly expressed needs. PMID:26958285

Social media patient testimonials in implant dentistry: information or misinformation?

Science.gov (United States)

Ho, Adrian; McGrath, Colman; Mattheos, Nikos

2017-07-01

This study aims to assess the educational value of YouTube patient testimonial videos in implant dentistry and qualitatively analyse the themes mentioned. Videos were sampled consecutively on YouTube, using the keywords "dental implant patients' testimonials experience," sorted "by relevance." Patient testimonials on dental implant treatment were examined. Inaudible or non-English videos were excluded. Four calibrated investigators scored the videos for educational content, using a matrix derived from the European Association for Osseointegration information booklet, and demographic details were recorded. Data were analysed qualitatively through inductive thematic analysis. A total of 202 videos were analysed (48 exclusions). Inter-examiner reliability was fair to moderate for informative statements and poor to substantial for misleading statements. A mean of 1.8 informative statements were made per video, compared with misleading, 0.5. Many topics were rarely mentioned, with 19/30 themes appearing fewer than 5% of videos. Patients often informed that implants could improve aesthetics and function, but were misleading on aspects of pain control. Some statements may heighten expectations or imply permanency of treatment. Balanced presentation in YouTube testimonials may be limited by bias of clinician-uploaded content. Greater magnitude and breadth of information would improve educational value. Many important parameters of implant therapy were overlooked, whilst information was often potentially misleading. © 2016 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

Development of Patient Status-Based Dynamic Access System for Medical Information Systems

Directory of Open Access Journals (Sweden)

Chang Won Jeong

2015-06-01

Full Text Available Recently, the hospital information system environment using IT communication technology and utilization of medical information has been increasing. In the medical field, the medical information system only supports the transfer of patient information to medical staff through an electronic health record, without information about patient status. Hence, it needs a method of real-time monitoring for the patient. Also, in this environment, a secure method in approaching healthcare through various smart devices is required. Therefore, in this paper, in order to classify the status of the patients, we propose a dynamic approach of the medical information system in a hospital information environment using the dynamic access control method. Also, we applied the symmetric method of AES (Advanced Encryption Standard. This was the best encryption algorithm for sending and receiving biological information. We can define usefulness as the dynamic access application service based on the final result of the proposed system. The proposed system is expected to provide a new solution for a convenient medical information system.

Guidelines for patient information in nuclear medicine;Guide pour l'information des patients en medecine nucleaire

Energy Technology Data Exchange (ETDEWEB)

Anon.

2010-02-15

This guide for patients information in nuclear medicine is organised in the following manner: what is a medical examination in nuclear medicine, the preparation and the duration of the examination, the possible risks and the radiation doses, pregnancy, delayed menstruation and nursing and what to do after the examination. (N.C.)

Rehabilitation of stroke patients with apraxia: the role of additional cognitive and motor impairments.

OpenAIRE

Heugten, C.M. van; Dekker, J.; Deelman, B.G.; Stehmann-Saris, J.C.; Kinebanian, A.

2000-01-01

PURPOSE: The present study investigated which additional cognitive and motor impairments were present in stroke patients with apraxia and which of these factors influenced the effects of treatment. METHOD: A group of 33 patients with apraxia were treated according to the guidelines of a therapy programme based on teaching patients strategies to compensate for the presence of apraxia. Patients were treated at occupational therapy departments in general hospitals, rehabilitation centres and nur...

Rethinking informal payments by patients in Europe: An institutional approach.

Science.gov (United States)

Williams, Colin C; Horodnic, Adrian V

2017-10-01

The aim of this paper is to explain informal payments by patients to healthcare professionals for the first time through the lens of institutional theory as arising when there are formal institutional imperfections and asymmetry between norms, values and practices and the codified formal laws and regulations. Reporting a 2013 Eurobarometer survey of the prevalence of informal payments by patients in 28 European countries, a strong association is revealed between the degree to which formal and informal institutions are unaligned and the propensity to make informal payments. The association between informal payments and formal institutional imperfections is then explored to evaluate which structural conditions might reduce this institutional asymmetry, and thus the propensity to make informal payments. The paper concludes by exploring the implications for tackling such informal practices. Copyright © 2017 Elsevier B.V. All rights reserved.

The power of clinicians' affective communication: how reassurance about non-abandonment can reduce patients' physiological arousal and increase information recall in bad news consultations. An experimental study using analogue patients.

Science.gov (United States)

Sep, Milou S C; van Osch, Mara; van Vliet, Liesbeth M; Smets, Ellen M A; Bensing, Jozien M

2014-04-01

The diagnosis of incurable cancer may evoke physiological arousal in patients. Physiological arousal can negatively impact patients' recall of information provided in the medical consultation. We aim to investigate whether clinicians' affective communication during a bad news consultation will decrease patients' physiological arousal and will improve recall. Healthy women (N=50), acting as analogue patients, were randomly assigned to watch one out of the two versions of a scripted video-vignette of a bad news consultation in which clinician's communication differed: standard vs. affective communication. Participants' skin conductance levels were obtained during video-watching, and afterwards their recall was assessed. While the diagnosis increased skin conductance levels in all analogue patients, skin conductance levels during the remainder of the consultation decreased more in the affective communication condition than in the standard condition. Analogue patients' recall was significantly higher in the affective condition. Breaking bad news evokes physiological arousal. Affective communication can decrease this evoked physiological arousal and might be partly responsible for analogue patients' enhanced information recall. Although our findings need to be translated to clinical patients, they suggest that clinicians need to deal with patients' emotions before providing additional medical information. Copyright © 2014 The Authors. Published by Elsevier Ireland Ltd.. All rights reserved.

Chemotherapy and information‐seeking behaviour: characteristics of patients using mass‐media information sources

NARCIS (Netherlands)

Muusses, L.D.; van Weert, J.C.M.; van Dulmen, S; Jansen, extern

2011-01-01

Objective Fulfilling patients' information needs can help them cope with illness and improve their well-being. Little research has been conducted on the characteristics of patients using different information sources. This study aims to get insight into which information sources patients receiving

"Informed" Consent: An Audit of Informed Consent of Cesarean Section Evaluating Patient Education and Awareness.

Science.gov (United States)

Kirane, Akhilesh G; Gaikwad, Nandkishor B; Bhingare, Prashant E; Mule, Vidya D

2015-12-01

Better diagnosis and early referral due to increased health care coverage have increased the cesarean deliveries at tertiary-care hospitals of India. Improvements in the health care system raise many concerns and need of cross-checking system in place to counter the problems pertaining to patient education and participation of patient. While most of the cesarean sections are done in good faith for the patient, it does not escape the purview of consumer awareness and protection. This cross-sectional study was undertaken at a tertiary level government institution to understand the level of awareness of 220 patients regarding the various aspects of cesarean delivery which are essential for women to know before giving an informed consent. 71 % of the women had knowledge about the indication and need to do cesarean delivery. Of these, only one-third (25 % of total women) were properly explained about procedure and complications. Other demographic and social characteristics were also evaluated. While the health care schemes have had their improved results, the onus lies upon the caregivers to improve and maintain the quality of health care in these tertiary-care government hospitals in proportion to the increase in patient load. The results of this study highlight the need for proper counseling of patients regarding complications of cesarean section. The fact that only 25 % of total cases were explained proper procedure and complication as opposed to 71 % of patients having proper knowledge about the indication of cesarean section points out the lack of information in seemingly "informed" consent. To bring about awareness about the risks and complications of cesarean section, there is a need that patients be counseled during the antenatal visits, specifically when patients visit near term for antenatal check up.

Rehabilitation of stroke patients with apraxia : the role of additional cognitive and motor impairments

NARCIS (Netherlands)

van Heugten, C.M.; Dekker, J.; Deelman, B.G.; Stehmann-Saris, J.C; Kinebanian, A

Purpose : The present study investigated which additional cognitive and motor impairments were present in stroke patients with apraxia and which of these factors influenced the effects of treatment. Method: A group of 33 patients with apraxia were treated according to the guidelines of a therapy

Rehabilitation of stroke patients with apraxia: the role of additional cognitive and motor impairments.

NARCIS (Netherlands)

Heugten, C.M. van; Dekker, J.; Deelman, B.G.; Stehmann-Saris, J.C.; Kinebanian, A.

2000-01-01

PURPOSE: The present study investigated which additional cognitive and motor impairments were present in stroke patients with apraxia and which of these factors influenced the effects of treatment. METHOD: A group of 33 patients with apraxia were treated according to the guidelines of a therapy

Cognitive Function in Patients Undergoing Arthroplasty: The Implications for Informed Consent

Directory of Open Access Journals (Sweden)

N. Demosthenous

2011-01-01

Full Text Available Obtaining informed consent for an operation is a fundamental daily interaction between orthopaedic surgeon and patient. It is based on a patient's capacity to understand and retain information about the proposed procedure, the potential consequences of having it, and the alternative options available. We used validated tests of memory on 59 patients undergoing lower limb arthroplasty to assess how well they learned and recalled information about their planned procedure. All patients showed an ability to learn new material; however, younger age and higher educational achievement correlated with better performance. These results have serious implications for orthopaedic surgeons discussing planned procedures. They identify groups of patients who may require enhanced methods of communicating the objectives, risks, and alternatives to surgery. Further research is necessary to assess interventions to improve communication prior to surgery.

Profile of e-patients: analysis of their cancer information-seeking from a national survey.

Science.gov (United States)

Kim, Kyunghye; Kwon, Nahyun

2010-10-01

Researchers have yet to fully understand how competent e-patients are in selecting and using health information sources, or, more importantly, who e-patients are. This study attempted to uncover how cancer e-patients differ from other cancer information seekers in terms of their sociodemographic background, social networks, information competence, and selection of cancer information sources. We analyzed data from the National Cancer Institute's 2005 Health Information National Trends Survey, and a series of chi-square tests showed that factors that distinguished cancer e-patients from other cancer information seekers were age, gender, education, employment status, health insurance, and membership in online support groups. They were not different in the other factors measured by the survey. Our logistic regression analysis revealed that the e-patients were older and talked about their health issues with friends or family more frequently compared with online health information seekers without cancer. While preferring information from their doctors over the Internet, e-patients used the Internet as their primary source. In contrast to previous literature, we found little evidence that e-patients were savvy health information consumers who could make informed decisions on their own health. The findings of this study addressed a need for a better design and delivery of health information literacy programs for cancer e-patients.

The relationship between different information sources and disease-related patient knowledge and anxiety in patients with inflammatory bowel disease.

Science.gov (United States)

Selinger, C P; Carbery, I; Warren, V; Rehman, A F; Williams, C J; Mumtaz, S; Bholah, H; Sood, R; Gracie, D J; Hamlin, P J; Ford, A C

2017-01-01

Patient education forms a cornerstone of management of inflammatory bowel disease (IBD). The Internet has opened new avenues for information gathering. To determine the relationship between different information sources and patient knowledge and anxiety in patients with IBD. The use of information sources in patients with IBD was examined via questionnaire. Anxiety was assessed with the hospital anxiety and depression scale and disease-related patient knowledge with the Crohn's and colitis knowledge score questionnaires. Associations between these outcomes and demographics, disease-related factors, and use of different information sources were analysed using linear regression analysis. Of 307 patients (165 Crohn's disease, 142 ulcerative colitis) 60.6% were female. Participants used the hospital IBD team (82.3%), official leaflets (59.5%), and official websites (53.5%) most frequently in contrast to alternative health websites (9%). University education (P sex (P = 0.004), clinically active disease (P sources are associated with better knowledge or worse anxiety levels. Face-to-face education and written information materials remain the first line of patient education. Patients should be guided towards official information websites and warned about the association between the use of alternative health websites or random links and anxiety. © 2016 John Wiley & Sons Ltd.

The challenge of effectively communicating patient safety information.

Science.gov (United States)

Hugman, Bruce; Edwards, I Ralph

2006-07-01

Rational use of drugs and patient safety are seriously compromised by a lack of good information, education and effective communication at all stages of drug development and use. From animal trials through to dispensing, there are misconceptions and opportunities for error which current methods of drug information communication do not adequately address: they do not provide those responsible for prescribing and dispensing drugs with the data and information they need to pass on complex and often changing messages to patients and the public. The incidence of adverse reactions due to the way drugs are used; the variable impact of regulatory guidelines and warnings on prescribing behaviour; drug scares and crises suggest a great gap between the ideals of the safe use of medicines and the reality in homes, clinics and hospitals around the world. To address these challenges, the authors review the several levels at which safety information is generated and communicated, and examine how, at each stage, the content and its significance, and the method of communication can be improved.

Informed consent: do information pamphlets improve post-operative risk-recall in patients undergoing total thyroidectomy: prospective randomized control study

OpenAIRE

Alsaffar, Hussain; Wilson, Lindsay; Kamdar, Dev P.; Sultanov, Faizullo; Enepekides, Danny; Higgins, Kevin M.

2016-01-01

Background Informed consent consists of basic five elements: voluntarism, capacity, disclosure, understanding, and ultimate decision-making. Physician disclosure, patient understanding, and information retention are all essential in the doctor-patient relationship. This is inclusive of helping patients make and manage their decisions and expectations better and also to deal with any consequences and/or complications that arise. This study investigates whether giving patients procedure-specifi...

Injustice in Access to Health Information: The Difference between Health Professionals and Patients

Directory of Open Access Journals (Sweden)

Hasan Ashrafi-rizi

2016-10-01

Full Text Available The role of information is undeniable in promoting public health (1-3. “Access to health information for all” was the slogan of the World Health Organization in 2004 (4. The proving of this slogan requires access to health information by beneficiaries (health professionals and patients. Access to health information by specialists as partly been achieved, but access to health information for patients and their families is considered low (5-7, which could have adverse effects. Health professionals have quick and easy access to information through libraries and medical information centers, participation in seminars, exchange of scientific information with other professionals, as well as identifying ways to effectively access to health information, but patients and their families do not have access to such facilities and capabilities. Therefore, patients and their families are faced with a phenomenon known as “inequity in access to health information” and the continuation of the injustice leads to health information poverty. Thus, the main question now is what we should do? It seems that the government needs to develop a national policy in the field of health information and it is the most important step. In the next step, the government should expand the concept production via using potentials of different organizations like public media (TV and Radio, health ministry and press and increase the access of patients to health information in the easy language (level of health information between health professionals and patients is different.

Information required from States, including 'small quantities protocol' status, under the Protocol Additional to Safeguards Agreements

International Nuclear Information System (INIS)

Tuley, N.

1999-01-01

The Model, or Additional, Protocol to the Model Safeguards Agreement, INFCIRC/153, contains, inter alia, provisions for expanded declarations from Member States to the IAEA. These provisions include earlier design information declarations and information on fuel cycles activities, such a mining and milling, that were not previously part of safeguards. The session discusses the extent of the expanded declarations and provides examples of the forms that will be used to provide the information to the Agency. (author)

Developing VISO: Vaccine Information Statement Ontology for patient education.

Science.gov (United States)

Amith, Muhammad; Gong, Yang; Cunningham, Rachel; Boom, Julie; Tao, Cui

2015-01-01

To construct a comprehensive vaccine information ontology that can support personal health information applications using patient-consumer lexicon, and lead to outcomes that can improve patient education. The authors composed the Vaccine Information Statement Ontology (VISO) using the web ontology language (OWL). We started with 6 Vaccine Information Statement (VIS) documents collected from the Centers for Disease Control and Prevention (CDC) website. Important and relevant selections from the documents were recorded, and knowledge triples were derived. Based on the collection of knowledge triples, the meta-level formalization of the vaccine information domain was developed. Relevant instances and their relationships were created to represent vaccine domain knowledge. The initial iteration of the VISO was realized, based on the 6 Vaccine Information Statements and coded into OWL2 with Protégé. The ontology consisted of 132 concepts (classes and subclasses) with 33 types of relationships between the concepts. The total number of instances from classes totaled at 460, along with 429 knowledge triples in total. Semiotic-based metric scoring was applied to evaluate quality of the ontology.

Consumer informatics: helping patients to access health information via the Internet.

Science.gov (United States)

Rhodes, E

2000-01-01

Now that many patients independently access health information on the World Wide Web (WWW), healthcare professionals are becoming concerned with control and quality of information available there. The technology has the potential to help patients to become more self-sufficient in managing their own health care and outcomes. This paper examines the importance of developing mechanisms to assess the quality and content of health information websites.

The invisible work of personal health information management among people with multiple chronic conditions: qualitative interview study among patients and providers.

Science.gov (United States)

Ancker, Jessica S; Witteman, Holly O; Hafeez, Baria; Provencher, Thierry; Van de Graaf, Mary; Wei, Esther

2015-06-04

: managing transfers of medical information to solve problems was a tremendous amount of work that was largely unrecognized by the medical establishment. We conclude that personal health information management should be recognized as an additional burden that MCC places upon patients. Effective structural solutions for information sharing, whether institutional ones such as care management or technological ones such as electronic health information exchange, are likely not only to improve the quality of information shared but reduce the burden on patients already weighed down by MCC.

Capturing patients' needs in casemix: a systematic literature review on the value of adding functioning information in reimbursement systems.

Science.gov (United States)

Hopfe, Maren; Stucki, Gerold; Marshall, Ric; Twomey, Conal D; Üstün, T Bedirhan; Prodinger, Birgit

2016-02-03

Contemporary casemix systems for health services need to ensure that payment rates adequately account for actual resource consumption based on patients' needs for services. It has been argued that functioning information, as one important determinant of health service provision and resource use, should be taken into account when developing casemix systems. However, there has to date been little systematic collation of the evidence on the extent to which the addition of functioning information into existing casemix systems adds value to those systems with regard to the predictive power and resource variation explained by the groupings of these systems. Thus, the objective of this research was to examine the value of adding functioning information into casemix systems with respect to the prediction of resource use as measured by costs and length of stay. A systematic literature review was performed. Peer-reviewed studies, published before May 2014 were retrieved from CINAHL, EconLit, Embase, JSTOR, PubMed and Sociological Abstracts using keywords related to functioning ('Functioning', 'Functional status', 'Function*, 'ICF', 'International Classification of Functioning, Disability and Health', 'Activities of Daily Living' or 'ADL') and casemix systems ('Casemix', 'case mix', 'Diagnosis Related Groups', 'Function Related Groups', 'Resource Utilization Groups' or 'AN-SNAP'). In addition, a hand search of reference lists of included articles was conducted. Information about study aims, design, country, setting, methods, outcome variables, study results, and information regarding the authors' discussion of results, study limitations and implications was extracted. Ten included studies provided evidence demonstrating that adding functioning information into casemix systems improves predictive ability and fosters homogeneity in casemix groups with regard to costs and length of stay. Collection and integration of functioning information varied across studies. Results suggest

The utilization of formal and informal home care by older patients with cancer: a Belgian cohort study with two control groups.

Science.gov (United States)

Baitar, Abdelbari; Buntinx, Frank; De Burghgraeve, Tine; Deckx, Laura; Bulens, Paul; Wildiers, Hans; van den Akker, Marjan

2017-09-12

The purpose of this paper is to analyse the utilization of formal and informal home care among older patients with cancer (OCP) and to compare this with middle-aged patients with cancer (MCP) and older patients without cancer (ONC). Additionally, we examined predictors of transitions towards formal care one year after a cancer diagnosis. OCP and MCP had to be recruited within three months after a cancer diagnosis and have an estimated life expectancy over six months. ONC consisted of patients without known cancer, seen by the general practitioner. Formal and informal care were compared between the patient groups at baseline, i.e. shortly after a cancer diagnosis and changes in care were studied after one year. A total of 844 patients were evaluable for formal care at baseline and 469 patients (56%) at follow-up. At baseline, about half of older adults and 18% of MCP used formal care, while about 85% of cancer patients and 57% ONC used informal care. Formal care increased for all groups after one year though not significantly in OCP. The amount of informal care only changed in MCP which decreased after one year. Cancer-related factors and changes in need factors predict a transition towards formal care after a cancer diagnosis. A cancer diagnosis has a different impact on the use of formal and informal care than ageing as such. The first year after a cancer diagnosis is an important time to follow-up on the patients' needs for home care.

Information quality and dynamics of patients' interactions on tonsillectomy web resources

Directory of Open Access Journals (Sweden)

Marianne Arsenault

2016-05-01

Full Text Available Information technologies have drastically altered the way patients gather health-related information. By analysing web resources on tonsillectomy, we expose information quality and dynamics of patients' interactions in the online continuum. Readability was assessed using Flesch Reading Ease (FRE, Flesch Kincaid Grade Level (FKGL, Simple Measure of Gobbledygook (SMOG, and Gunning Fog Index (GFI. Comprehensibility and actionability were assessed using the Patient Education Materials Assessment Tool (PEMAT. Metrics of forums included author characteristics (level of disclosure, gender, age, avatar image, etc., posts' motive (community support vs. medical information and content (word count, emoticon use, number of replies, etc.. Analysis of 6 professional medical websites, of 10 health information portals, and of 3 discussion forums totalizing 1369 posts on 358 threads, from January 1, 2007 to December 31, 2014, reveals that online resources exceed understandability recommendations. Women were more present on online health forums (68.2% of authors disclosing their gender and invested themselves more in their avatar. Authors replying were significantly older than authors of original posts (39.7 ± 0.8 years vs. 29.2 ± 0.9 years, p < 0.001. The degree of self-disclosure was inversely proportional to the requests for medical information (p < 0.001. Men and women were equally seeking medical information (men: 74.0%, women: 77.0% and community support (men: 65.7%, women: 70.4%, however women responded more supportively (women 86.2%, men 59.1%, p < 0.001. The dynamics of patients' interactions used to overcome accessibility difficulties encountered is complex. This work outlines the necessity for comprehensible medical information to adequately answer patients' needs.

Adaptation of the European Commission-recommended user testing method to patient medication information leaflets in Japan

Directory of Open Access Journals (Sweden)

Yamamoto M

2017-06-01

, readability, usefulness of information, and layout and appearance. Participants were also asked for their opinions on the leaflets.Results: Response rates were 100% for both Mercazole and Strattera. The revised versions of both Guides were superior or equal to the current versions in terms of accessibility and understandability. The revised version of the Mercazole guide showed better ratings for readability, usefulness of information, and layout (p<0.01 than did the current version, while that for Strattera showed superior readability and layout (p<0.01.Conclusion: User testing was effective for evaluating the utility of Drug Guide for Patients. Additionally, the revised version had superior accessibility and understandability. Keywords: user testing, drug information for patients, readability, risk management, risk communication, accessibility, understandability

The organization of information in electronic patient record under the perspective of usability recommendations: proposition of organization of information.

Directory of Open Access Journals (Sweden)

Tatiana Tissa Kawakami

2017-10-01

Full Text Available Introduction: Among the various areas of studies, health information is highlighted in this study. More specifically, the patient's electronic medical records and issues related to it’s informational organization and usability. Objectives: suggest Usability recommendations applicable to the Electronic Patient Record. More specifically, identify, according to the specialized literature, recommendations of Usability, as well as to develop a checklist with recommendations of Usability for the Electronic Patient Record. Methodology: the study’s basic purpose is the theoretical nature. The deductive method of documental delimitation was chosen. Results: elaboration of checklist with recommendations of Usability for Electronic Patient Records. Conclusion: Usability recommendations can be used to improve electronic patient records. However, it should be noted that knowledge in the scope of Information Science should be considered and summed up, since a great deal of content related to Usability refers to operational and visual aspects of the interface, not clearly or directly contemplating the issues related to information.

Impact of informed consent on patient decisions regarding third ...

African Journals Online (AJOL)

2015-06-22

Jun 22, 2015 ... patient is central to the ability to grant informed consent. A verbal ... Access this article online .... which only the relationship with the level of the second .... is the best way to relieve the patient's anxiety, but the doctor.

[Patients' preferences for information in health care decision-making].

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Borracci, Raúl A; Manente, Diego; Giorgi, Mariano A; Calderón, Gustavo; Ciancio, Alejandro; Doval, Hernán C

2012-01-01

A survey was carried out among patients who concurred to cardiologic services to know how patients preferred to be informed about their health status, and the demographic characteristics associated to these preferences, considering the following items: knowledge about the disease, information about different therapeutic options and decision-making. From 770 people surveyed, 738 (95.8%) answered the form completely. A trend to trust only in the doctor's knowledge to obtain information (81.7%), in wanting to know the options of treatment and express one's point of view (85.9%), and to involve the family in the decisions (63.2%) was observed. 9.6% preferred to receive the minimum necessary information or "to know nothing" about an alleged serious disease. Males tended less to request options and give opinion on the subject (or: 0.64), giving less freedom to family involvement (or: 1.31). people with a lower social and economical level claim fewer options (or: 0.48) and gave less family participation (or = 1.79). Natives from other South American countries had a minor tendency to demand for options and express their thoughts (or: 0.60); and the ones with lower education level trusted less in the doctor's knowledge (or: 1.81), demanded fewer options (or: 0.45) and chose not to know the severity of the disease (or: 0.56). the analysis of the demographical variables allowed to define preferences associated to age, sex, origin, education, religion and health status. In conclusion, although it is imperative to promote the patient's autonomy, individual preferences must be taken into account before informing and compromising the patient in decision-making about his disease.

Does information overload prevent chronic patients from reading self-management educational materials?

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Liu, Chung-Feng; Kuo, Kuang-Ming

2016-05-01

Self-care management is becoming an important part of care for chronic patients. However, various kinds of self-management educational materials which government or healthcare institutions provide for patients may not achieve the expected outcome. One of the critical reasons affecting patients' use intention could be patients' perceived information overload regarding the self-management educational materials. This study proposed an extended model of the Theory of Planned Behavior (TPB), which incorporated perceived information overload, to explore if information overload will prevent chronic patients from reading educational materials for self-care management. The independent variables are attitude, subject norm, perceived behavior control and perceived information overload while the dependent variable is behavior intention to use the self-management educational materials. Perceived information overload is also referred to as an antecedent variable which may has impacts on attitude and perceived behavior control. The cross-sectional study interviewed newly diagnosed chronic patients with coronary artery disease, who are the potential users of the self-management educational materials, in a medical center in Taiwan. Data were analyzed using descriptive statistics of the basic information distribution of the respondents, and structural equation modeling to study the reliability and validity for testing hypotheses. A total of 110 respondents were enrolled in this study and successful interview data were collected from 106 respondents. The result indicates that the patients' perceived information overload of self-management educational materials was validated to have impacts on attitude and perceived behavioral control constructs of the TPB as well as contributing a direct impact on patients' intentions to use self-management educational materials. Besides, subjective norm and perceived behavioral control constructs were validated to have significant impacts on

How does additional diagnostic testing influence the initial diagnosis in patients with cognitive complaints in a memory clinic setting?

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Meijs, Anouk P; Claassen, Jurgen A H R; Rikkert, Marcel G M Olde; Schalk, Bianca W M; Meulenbroek, Olga; Kessels, Roy P C; Melis, René J F

2015-01-01

patients suspected of dementia frequently undergo additional diagnostic testing (e.g. brain imaging or neuropsychological assessment) after standard clinical assessment at a memory clinic. This study investigates the use of additional testing in an academic outpatient memory clinic and how it influences the initial diagnosis. the initial diagnosis after standard clinical assessment (history, laboratory tests, cognitive screening and physical and neurological examination) and the final diagnosis after additional testing of 752 memory clinic patients were collected. We specifically registered if, and what type of, additional testing was requested. additional testing was performed in 518 patients (69%), 67% of whom underwent magnetic resonance imaging, 45% had neuropsychological assessment, 14% had cerebrospinal fluid analysis and 49% had (combinations of) other tests. This led to a modification of the initial diagnosis in 17% of the patients. The frequency of change was highest in patients with an initial non-Alzheimer's disease (AD) dementia diagnosis (54%, compared with 11 and 14% in patients with AD and 'no dementia'; P testing 44% was diagnosed with AD, 9% with non-AD dementia and 47% with 'no dementia'. additional testing should especially be considered in non-AD patients. In the large group of patients with an initial AD or 'no dementia' diagnosis, additional tests have little diagnostic impact and may perhaps be used with more restraint. © The Author 2014. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

A systematic review and thematic synthesis of quality of life in the informal carers of cancer patients with cachexia.

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Wheelwright, Sally; Darlington, Anne-Sophie; Hopkinson, Jane B; Fitzsimmons, Deborah; Johnson, Colin

2016-02-01

Informal carers of cancer patients with cachexia face additional challenges to those encountered by informal carers in general because of the central role food and eating play in everyday life. Patient weight loss and anorexia, core features of cancer cachexia, are frequent causes of distress in caregivers. Identification of quality of life issues can inform the development of interventions for both caregivers and patients and facilitate communication with healthcare professionals. To identify quality of life issues that are relevant to carers of cancer patients with cachexia. A systematic review and thematic synthesis of the qualitative literature were conducted. Reporting followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PubMed, ISI Web of Knowledge, EMBASE, MEDLINE, CINAHL, PsycINFO and PsycARTICLES were searched for publications dated from January 1980 to February 2015 using search terms relating to cancer, cachexia, quality of life and carers. Papers written in the English language, featuring direct quotes from the carers of adult patients with any cancer diagnosis and cachexia or problems with weight loss or anorexia, were included. Five themes were extracted from the 16 identified studies. These highlighted the impact on everyday life, the attempts of some carers to take charge, the need for healthcare professional's input, conflict with the patient and negative emotions. The complexity of caring for a cancer patient with cachexia translates into a range of problems and experiences for informal carers. By addressing the impact of caring for a patient with cancer cachexia on carers, both caregiver and patient quality of life may improve. © The Author(s) 2015.

The information needs of patients receiving procedural sedation in a hospital emergency department.

Science.gov (United States)

Revell, Sue; Searle, Judy; Thompson, Shona

2017-07-01

This research investigated the information needs of patients receiving ED procedural sedation to determine the best format to consistently deliver key information in a way acceptable to all involved. Of particular interest was the question concerning patients' need for receiving written information. A descriptive exploratory study gathered qualitative data through face-to-face interviews and focus groups involving patients, nurses and medical staff. Individual interviews were conducted with eight adult patients following procedural sedation. They identified very few gaps in terms of specific information they needed pertaining to procedural sedation and rejected the need for receiving information in a written format. Their information needs related to a central concern for safety and trust. Focus groups, reflecting on the findings from patients, were conducted with five ED nurses and four emergency medicine consultants/registrars who regularly provided procedural sedation. Themes that emerged from the analysis of data from all three groups identified the issues concerning patient information needs as being: competence and efficiency of staff; explanations of procedures and progress; support person presence; and medico-legal issues. The research confirms that the quality of the patient's ED experience, specifically related to procedural sedation, is enhanced by ED staff, especially nurses, providing them with ongoing and repeated verbal information relevant to their circumstances. Copyright © 2017 Elsevier Ltd. All rights reserved.

Preoperative information provided to Swedish and immigrant patients before total hip replacement.

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Krupic, Ferid; Määttä, Sylvia; Garellick, Göran; Lyckhage, Elisabeth Dahlborg; Kärrholm, Johan

2012-01-01

Total hip replacement is an operation that usually leads to pain relief and improved health related quality of life (HRQoL). Previous studies have demonstrated the importance of information about upcoming surgery. Therefore, it was of interest to study how both immigrants, whose first language was not Swedish, and Swedish patients described pre-operative information. Individual interviews were conducted with 10 immigrants and 10 Swedish participants. The data were analysed using qualitative content analysis. The study was carried out in western Sweden from March to November 2010. The findings revealed that pre-operative information for all patients undergoing elective total hip replacement was limited. Patients from both groups expressed concern about inadequate preoperative information pertaining to the surgery, implant selection, pain relief, choice of anaesthesia, no or too short a time to put questions to the surgeon and an overall stressful situation. Adequate preoperative information is important for optimising pain relief and shortening the hospital stay. The fact that the patients overwhelmingly rated the preoperative information as inadequate may be due to several reasons. Mental distress and the two-week interval between the time when the patient received the information and the operation might have contributed to the low degree of retention.

Digital multimedia books produced using iBooks Author for pre-operative surgical patient information.

Science.gov (United States)

Briggs, Matthew; Wilkinson, Caroline; Golash, Aprajay

2014-10-01

Presenting patients with medical information and ensuring informed consent can be difficult due to patients with varying levels of literacy, physical and mental disabilities and spoken languages. Patients obtaining information from external sources, such as the internet, can also be problematic as the information can be irrelevant, inaccurate or misleading. A patient satisfaction study was performed in order to assess the effectiveness of using ebooks in order to communicate pre and post surgical information to neurosurgical patients. 3 digital books were produced using iBooks Author (a free desktop publishing program designed by Apple) including ACDF (anterior cervical discectomy and fusion), lumbar laminectomy and lumbar discectomy. Each book contained written information organised into sections and chapters along with an array of multimedia elements including 3D animations, interactive diagrams, 3D models of anatomy and patient experience videos. 32 volunteer patients were then presented with the digital books via an iPad during their preoperative assessment and then asked to complete a questionnaire. The results demonstrated a demand for this type of digital presentation of medical information and also showed patients no longer felt the need to seek further information from external sources.

Illness Perception and Information Behaviour of Patients with Rare Chronic Diseases

Science.gov (United States)

Katavic, Snježana Stanarevic; Tanackovic, Sanjica Faletar; Badurina, Boris

2016-01-01

Introduction: This study examined possible correlations between health information behaviour and illness perception among patients with rare chronic diseases. Illness perception is related to coping strategies used by patients, and some health information behaviour practices may be associated with better coping and more positive perception of…

Regression analysis of informative current status data with the additive hazards model.

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Zhao, Shishun; Hu, Tao; Ma, Ling; Wang, Peijie; Sun, Jianguo

2015-04-01

This paper discusses regression analysis of current status failure time data arising from the additive hazards model in the presence of informative censoring. Many methods have been developed for regression analysis of current status data under various regression models if the censoring is noninformative, and also there exists a large literature on parametric analysis of informative current status data in the context of tumorgenicity experiments. In this paper, a semiparametric maximum likelihood estimation procedure is presented and in the method, the copula model is employed to describe the relationship between the failure time of interest and the censoring time. Furthermore, I-splines are used to approximate the nonparametric functions involved and the asymptotic consistency and normality of the proposed estimators are established. A simulation study is conducted and indicates that the proposed approach works well for practical situations. An illustrative example is also provided.

Model of health information sharing behavior among patients in cervical cancer

Directory of Open Access Journals (Sweden)

Ragil Tri atmi

2018-01-01

Full Text Available Cervical cancer is the second highest cause of death for women in Indonesia, despite a deadly illness, patients with cervical cancer are not desperate to survive. Instead, they are motivated to undertake positive actions, one of which is to do health informtion sharing or share information on environmental health tersekatnya. This study aims to look at how the patterns of behavior of sharing health information on cervical cancer patients, as well as the motive behind their actions the health information sharing. This study uses the method of qualitative research grounded approach. Location of the study conducted in Surabaya, while the search for informants researchers used snowball sampling. The results from this study is there are different behavior patterns of health information sharing among cervical cancer patients who have been diagnosed with advanced cervical cancer with cervical cancer at an early stage level.

Digital imaging and electronic patient records in pathology using an integrated department information system with PACS.

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Kalinski, Thomas; Hofmann, Harald; Franke, Dagmar-Sybilla; Roessner, Albert

2002-01-01

Picture archiving and communication systems have been widely used in radiology thus far. Owing to the progress made in digital photo technology, their use in medicine opens up further opportunities. In the field of pathology, digital imaging offers new possiblities for the documentation of macroscopic and microscopic findings. Digital imaging has the advantage that the data is permanently and readily available, independent of conventional archives. In the past, PACS was a separate entity. Meanwhile, however, PACS has been integrated in DIS, the department information system, which was also run separately in former times. The combination of these two systems makes the administration of patient data, findings and images easier. Moreover, thanks to the introduction of special communication standards, a data exchange between different department information systems and hospital information systems (HIS) is possible. This provides the basis for a communication platform in medicine, constituting an electronic patient record (EPR) that permits an interdisciplinary treatment of patients by providing data of findings and images from clinics treating the same patient. As the pathologic diagnosis represents a central and often therapy-determining component, it is of utmost importance to add pathologic diagnoses to the EPR. Furthermore, the pathologist's work is considerably facilitated when he is able to retrieve additional data from the patient file. In this article, we describe our experience gained with the combined PACS and DIS systems recently installed at the Department of Pathology, University of Magdeburg. Moreover, we evaluate the current situation and future prospects for PACS in pathology.

Shared Decision Making: The Need For Patient-Clinician Conversation, Not Just Information.

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Hargraves, Ian; LeBlanc, Annie; Shah, Nilay D; Montori, Victor M

2016-04-01

The growth of shared decision making has been driven largely by the understanding that patients need information and choices regarding their health care. But while these are important elements for patients who make decisions in partnership with their clinicians, our experience suggests that they are not enough to address the larger issue: the need for the patient and clinician to jointly create a course of action that is best for the individual patient and his or her family. The larger need in evidence-informed shared decision making is for a patient-clinician interaction that offers conversation, not just information, and care, not just choice. Project HOPE—The People-to-People Health Foundation, Inc.

Perceived Quality of Informed Refusal Process: A Cross-Sectional Study from Iranian Patients' Perspectives.

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Farzandipour, Mehrdad; Sheikhtaheri, Abbas; Sadeqi Jabali, Monireh

2015-12-01

Patients have the right to refuse their treatment; however, this refusal should be informed. We evaluated the quality of the informed refusal process in Iranian hospitals from patients' viewpoints. To this end, we developed a questionnaire that covered four key aspects of the informed refusal process including; information disclosure, voluntariness, comprehension, and provider-patient relationship. A total of 284 patients who refused their treatment from 12 teaching hospitals in the Isfahan Province, Iran, were recruited and surveyed to produce a convenience sample. Patients' perceptions about the informed refusal process were scored and the mean scores of the four components were calculated. The findings showed that the practice of information disclosure (9.6 ± 6.4 out of 22 points) was perceived to be moderate, however, comprehension (2.3 ± 1.4 out of 4 points), voluntariness (8.7 ± 1.5 out of 12 points) and provider-patient relationship (10.2 ± 5.2 out of 16 points) were perceived to be relatively good. We found that patients, who refused their care before any treatment had commenced, reported a lower quality of information disclosure and voluntariness. Patients informed by nurses and those who had not had a previous related admission, reported lower scores for comprehension and relationship. In conclusion, the process of obtaining informed refusal was relatively satisfactory except for levels of information disclosure. To improve current practices, Iranian patients need to be better informed about; different treatment options, consequences of treatment refusal, costs of not continuing treatment and follow-ups after refusal. Developing more informative refusal forms is needed. © 2014 John Wiley & Sons Ltd.

Applying Multiple Methods to Comprehensively Evaluate a Patient Portal’s Effectiveness to Convey Information to Patients

Science.gov (United States)

Krist, Alex H; Aycock, Rebecca A; Kreps, Gary L

2016-01-01

Background Patient portals have yet to achieve their full potential for enhancing health communication and improving health outcomes. Although the Patient Protection and Affordable Care Act in the United States mandates the utilization of patient portals, and usage continues to rise, their impact has not been as profound as anticipated. Objective The objective of our case study was to evaluate how well portals convey information to patients. To demonstrate how multiple methodologies could be used to evaluate and improve the design of patient-centered portals, we conducted an in-depth evaluation of an exemplar patient-centered portal designed to promote preventive care to consumers. Methods We used 31 critical incident patient interviews, 2 clinician focus groups, and a thematic content analysis to understand patients’ and clinicians’ perspectives, as well as theoretical understandings of the portal’s use. Results We gathered over 140 critical incidents, 71.8% (102/142) negative and 28.2% (40/142) positive. Positive incident categories were (1) instant medical information access, (2) clear health information, and (3) patient vigilance. Negative incident categories were (1) standardized content, (2) desire for direct communication, (3) website functionality, and (4) difficulty interpreting laboratory data. Thematic analysis of the portal’s immediacy resulted in high scores in the attributes enhances understanding (18/23, 78%), personalization (18/24, 75%), and motivates behavior (17/24, 71%), but low levels of interactivity (7/24, 29%) and engagement (2/24, 8%). Two overarching themes emerged to guide portal refinements: (1) communication can be improved with directness and interactivity and (2) perceived personalization must be greater to engage patients. Conclusions Results suggest that simple modifications, such as increased interactivity and personalized messages, can make portals customized, robust, easily accessible, and trusted information sources

From DTCA-PD to patient information to health information: the complex politics and semantics of EU health policy.

Science.gov (United States)

Brooks, Eleanor; Geyer, Robert

2012-12-01

Between 2001 and 2011 the pharmaceutical industry, supported by DG Enterprise, was engaged in an ongoing campaign to repeal/amend the European Union (EU) ban on direct-to-consumer advertising of prescription drugs (DTCA-PD). As it became increasingly clear that the ban would not be repealed, DTCA-PD supporters tried to shift the debate away from advertising and towards the provision of 'patient information' and the rights of patients to access such information. Meanwhile, a variety of national and European health organizations, supported by DG SANCO, sought to maintain the ban and oppose the industry-supported 'patient information' campaign. Instead, they promoted a concept of 'health information' that included all aspects of citizens' health, not just pharmaceuticals. This article aims to analyse the transition from DTCA-PD to patient information to health information and examine its implications for EU health policy as a complex policy space. The article examines the emergence and development of EU health policy and the evolution of the DTCA-PD debate through the lens of complexity theory. It analyses the nature of the semantic, political and policy transition and asks why it occurred, what it tells us about EU health policy and future EU health legislation and how it may be understood from a complexity perspective. The article concludes that the complexity framework is ideally suited for the field of public health and, in particular, the DTCA-PD debate. Having successfully shifted the policy-focus of the debate to patients' rights and health information, opponents of the legislation are likely to face their next battle in the realm of cyberspace, where regulatory issues change the nature of advertising. © 2012 Blackwell Publishing Ltd.

What constitutes evidence-based patient information? Overview of discussed criteria.

Science.gov (United States)

Bunge, Martina; Mühlhauser, Ingrid; Steckelberg, Anke

2010-03-01

To survey quality criteria for evidence-based patient information (EBPI) and to compile the evidence for the identified criteria. Databases PubMed, Cochrane Library, PsycINFO, PSYNDEX and Education Research Information Center (ERIC) were searched to update the pool of criteria for EBPI. A subsequent search aimed to identify evidence for each criterion. Only studies on health issues with cognitive outcome measures were included. Evidence for each criterion is presented using descriptive methods. 3 systematic reviews, 24 randomized-controlled studies and 1 non-systematic review were included. Presentation of numerical data, verbal presentation of risks and diagrams, graphics and charts are based on good evidence. Content of information and meta-information, loss- and gain-framing and patient-oriented outcome measures are based on ethical guidelines. There is a lack of studies on quality of evidence, pictures and drawings, patient narratives, cultural aspects, layout, language and development process. The results of this review allow specification of EBPI and may help to advance the discourse among related disciplines. Research gaps are highlighted. Findings outline the type and extent of content of EBPI, guide the presentation of information and describe the development process. Copyright 2009 Elsevier Ireland Ltd. All rights reserved.

Study of accessibility and quality of the patient information about medicines in Latvia

Directory of Open Access Journals (Sweden)

Ozolina V.

2012-10-01

Full Text Available Receipt of adequate amount of accurate patient information on medicines before their use is one of the main cornerstones of the treatment. Without the information medicines cannot be used safely and effectively. Basically, it can be argued that the information is converting the pharmacologically active substance into the medicinal product. Main source of information for patients in Latvia is Package leaflets. Label of medicines and patient information leaflet are drawn up in compliance with regulatory requirements, but for people it is often difficult to understand information contained in the package leaflets due to the complex language. The readability test – introduced as a mandatory requirement for marketing authorization and renewal of marketing authorization of medicines – improves the quality of package leaflets making them more patient “friendly”.

Security of electronic medical information and patient privacy: what you need to know.

Science.gov (United States)

Andriole, Katherine P

2014-12-01

The responsibility that physicians have to protect their patients from harm extends to protecting the privacy and confidentiality of patient health information including that contained within radiological images. The intent of HIPAA and subsequent HIPAA Privacy and Security Rules is to keep patients' private information confidential while allowing providers access to and maintaining the integrity of relevant information needed to provide care. Failure to comply with electronic protected health information (ePHI) regulations could result in financial or criminal penalties or both. Protected health information refers to anything that can reasonably be used to identify a patient (eg, name, age, date of birth, social security number, radiology examination accession number). The basic tools and techniques used to maintain medical information security and patient privacy described in this article include physical safeguards such as computer device isolation and data backup, technical safeguards such as firewalls and secure transmission modes, and administrative safeguards including documentation of security policies, training of staff, and audit tracking through system logs. Other important concepts related to privacy and security are explained, including user authentication, authorization, availability, confidentiality, data integrity, and nonrepudiation. Patient privacy and security of medical information are critical elements in today's electronic health care environment. Radiology has led the way in adopting digital systems to make possible the availability of medical information anywhere anytime, and in identifying and working to eliminate any risks to patients. Copyright © 2014 American College of Radiology. Published by Elsevier Inc. All rights reserved.

Communicating cancer treatment information using the Web: utilizing the patient's perspective in website development

NARCIS (Netherlands)

Hopmans, W.; Damman, O.C.; Timmermans, D.R.M.; Haasbeek, C.J.A.; Slotman, B.J.; Senan, S.

2014-01-01

Background: Online cancer information can support patients in making treatment decisions. However, such information may not be adequately tailored to the patient's perspective, particularly if healthcare professionals do not sufficiently engage patient groups when developing online information. We

Illustrations enhance older colorectal cancer patients' website satisfaction and recall of online cancer information.

Science.gov (United States)

Bol, N; Smets, E M A; Eddes, E H; de Haes, J C J M; Loos, E F; van Weert, J C M

2015-03-01

This study aims to investigate the effects of illustrations in online cancer information on older cancer patients' website satisfaction (i.e. satisfaction with the attractiveness, comprehensibility and emotional support from the website) and recall of information. In an online experiment, 174 younger (text-only information, text with two cognitive illustrations or text with two affective illustrations. In general, adding cognitive illustrations compared with text-only information improved the satisfaction with the attractiveness of the website in both younger and older patients. For older patients in particular, cognitive illustrations facilitated recall of cancer information: whereas older patients recalled less information overall compared with younger patients (39% vs. 50%), no statistically significant differences in age on recall were observed when cognitive illustrations were added to text. Furthermore, older patients were more satisfied with the emotional support from the website than younger patients, especially when affective illustrations were present. Our results suggest that effective online cancer communication for ageing populations involves considering both cognitive and affective illustrations to enhance website satisfaction and recall of cancer information. © 2015 John Wiley & Sons Ltd.

An end-to-end secure patient information access card system.

Science.gov (United States)

Alkhateeb, A; Singer, H; Yakami, M; Takahashi, T

2000-03-01

The rapid development of the Internet and the increasing interest in Internet-based solutions has promoted the idea of creating Internet-based health information applications. This will force a change in the role of IC cards in healthcare card systems from a data carrier to an access key medium. At the Medical Informatics Department of Kyoto University Hospital we are developing a smart card patient information project where patient databases are accessed via the Internet. Strong end-to-end data encryption is performed via Secure Socket Layers, transparent to transmit patient information. The smart card is playing the crucial role of access key to the database: user authentication is performed internally without ever revealing the actual key. For easy acceptance by healthcare professionals, the user interface is integrated as a plug-in for two familiar Web browsers, Netscape Navigator and MS Internet Explorer.

Representing Information in Patient Reports Using Natural Language Processing and the Extensible Markup Language

Science.gov (United States)

Friedman, Carol; Hripcsak, George; Shagina, Lyuda; Liu, Hongfang

1999-01-01

Objective: To design a document model that provides reliable and efficient access to clinical information in patient reports for a broad range of clinical applications, and to implement an automated method using natural language processing that maps textual reports to a form consistent with the model. Methods: A document model that encodes structured clinical information in patient reports while retaining the original contents was designed using the extensible markup language (XML), and a document type definition (DTD) was created. An existing natural language processor (NLP) was modified to generate output consistent with the model. Two hundred reports were processed using the modified NLP system, and the XML output that was generated was validated using an XML validating parser. Results: The modified NLP system successfully processed all 200 reports. The output of one report was invalid, and 199 reports were valid XML forms consistent with the DTD. Conclusions: Natural language processing can be used to automatically create an enriched document that contains a structured component whose elements are linked to portions of the original textual report. This integrated document model provides a representation where documents containing specific information can be accurately and efficiently retrieved by querying the structured components. If manual review of the documents is desired, the salient information in the original reports can also be identified and highlighted. Using an XML model of tagging provides an additional benefit in that software tools that manipulate XML documents are readily available. PMID:9925230

21 CFR 880.6300 - Implantable radiofrequency transponder system for patient identification and health information.

Science.gov (United States)

2010-04-01

... patient identification and health information. 880.6300 Section 880.6300 Food and Drugs FOOD AND DRUG... radiofrequency transponder system for patient identification and health information. (a) Identification. An implantable radiofrequency transponder system for patient identification and health information is a device...

Effect of Additional Information on Consumer Acceptance: An Example with Pomegranate Juice and Green Tea Blends

Directory of Open Access Journals (Sweden)

Federica Higa

2017-07-01

Full Text Available Pomegranate Juice (PJ and Green Tea (GT products have increased in popularity because of their beneficial health properties. Consumers look for healthier beverages, and rely on labels, claims, and product packaging when choosing a product. The objectives of this study were to determine (1 the sensory profiles and acceptance of PJ and GT blends; (2 whether additional information would have an effect on consumer acceptance; and (3 the total phenolic content (TPC of the samples. Six PJ and GT blends were evaluated by a descriptive panel in order to explore sensory differences in flavor characteristics. A consumer panel (n = 100 evaluated the samples before and after beneficial health information about the samples was provided to them. The blends that were higher in tea concentration were higher in Green and GT-like flavors, and lower in berry, beet, floral, sweetness, and cherry flavors. The overall liking scores of all of the samples increased after the information was provided to the consumers. The sample highest in PJ and lowest in GT blend was liked the most. In addition, as the samples increased in PJ, the TPC content increased. These results may be of interest to the beverage industry, providing information of consumer liking of beverage blends, and how information on health related claims affects consumer acceptance.

Review of information on the radiation chemistry of materials around waste canisters in salt and assessment of the need for additional experimental information

Energy Technology Data Exchange (ETDEWEB)

Jenks, G.H.; Baes, C.F. Jr.

1980-03-01

The brines, vapors, and salts precipitated from the brines will be exposed to gamma rays and to elevated temperatures in the regions close to a waste package in the salt. Accordingly, they will be subject to changes in composition brought about by reactions induced by the radiations and heat. This report reviews the status of information on the radiation chemistry of brines, gases, and solids which might be present around a waste package in salt and to assess the need for additional laboratory investigations on the radiation chemistry of these materials. The basic aspects of the radiation chemistry of water and aqueous solutions, including concentrated salt solutions, were reviewed briefly and found to be substantially unchanged from those presented in Jenks's 1972 review of radiolysis and hydrolysis in salt-mine brines. Some additional information pertaining to the radiolytic yields and reactions in brine solutions has become available since the previous review, and this information will be useful in the eventual, complete elucidation of the radiation chemistry of the salt-mine brines. 53 references.

Effect of a multimedia-assisted informed consent procedure on the information gain, satisfaction, and anxiety of cataract surgery patients.

Science.gov (United States)

Tipotsch-Maca, Saskia M; Varsits, Ralph M; Ginzel, Christian; Vecsei-Marlovits, Pia V

2016-01-01

To assess whether a multimedia-assisted preoperative informed consent procedure has an effect on patients' knowledge concerning cataract surgery, satisfaction with the informed consent process, and reduction in anxiety levels. Hietzing Hospital, Vienna, Austria. Prospective randomized controlled clinical trial. Patients participated in an informed consent procedure for age-related cataract surgery that included the standard approach only (reading the information brochure and having a standardized face-to-face discussion) or supplemented with a computer-animated video. The main outcome was information retention assessed by a questionnaire. Further outcome measures used were the State-Trait Anxiety Inventory, the Visual Function-14 score, and an assessment of satisfaction. The study included 123 patients (64 in standard-only group; 59 in computer-animated video group). Both groups scored well on the questionnaire; however, patients who watched the video performed better (82% retention versus 72%) (P = .002). Scores tended to decrease with increasing age (r = -0.25, P = .005); however, this decrease was smaller in the group that watched the video. Both groups had elevated anxiety levels (means in video group: anxiety concerning the current situation [S-anxiety] = 63.8 ± 9.6 [SD], general tendency toward anxiety [T-anxiety] = 65.5 ± 7.9; means in control group: S-anxiety = 61.9 ± 10.3, T-anxiety = 66.2 ± 7.8). A high level of information retention was achieved using an informed consent procedure consisting of an information brochure and a standardized face-to-face discussion. A further increase in information retention was achieved, even with increasing patient age, by adding a multimedia presentation. No author has a financial or proprietary interest in any material or method mentioned. Copyright © 2016 ASCRS and ESCRS. Published by Elsevier Inc. All rights reserved.

[Medical Service Information Seeking Behaviors in Rural and Urban Patients in Sichuan Province].

Science.gov (United States)

Zhang, Wen-Jie; Xue, Li; Chen, Rao; Duan, Zhan-Qi; Liu, Dan-Ping

2018-03-01

To understand how rural and urban patients seek medical service information in Sichuan province. A self-designed questionnaire was distributed randomly to patients who visited primary,secondary and tertiary health facilities in Chengdu,Yibin and Suining,collecting data in relation to their sources of medical service information,as well as the contents and credibility of the information. The major sources of medical service information came from friends,past experiences and television programs,which were consistent with the most desirable access channels. The urban patients were more likely to trust (5.3%) and use (10.6%) the Internet to obtain medical service information compared with their rural counterparts (3.4% and 5.5%,respectively, P marketing strategies for urban and rural patients should be developed to channel patients to appropriate health facilities. Copyright© by Editorial Board of Journal of Sichuan University (Medical Science Edition).

Component resolution reveals additional major allergens in patients with honeybee venom allergy.

Science.gov (United States)

Köhler, Julian; Blank, Simon; Müller, Sabine; Bantleon, Frank; Frick, Marcel; Huss-Marp, Johannes; Lidholm, Jonas; Spillner, Edzard; Jakob, Thilo

2014-05-01

Detection of IgE to recombinant Hymenoptera venom allergens has been suggested to improve the diagnostic precision in Hymenoptera venom allergy. However, the frequency of sensitization to the only available recombinant honeybee venom (HBV) allergen, rApi m 1, in patients with HBV allergy is limited, suggesting that additional HBV allergens might be of relevance. We performed an analysis of sensitization profiles of patients with HBV allergy to a panel of HBV allergens. Diagnosis of HBV allergy (n = 144) was based on history, skin test results, and allergen-specific IgE levels to HBV. IgE reactivity to 6 HBV allergens devoid of cross-reactive carbohydrate determinants (CCD) was analyzed by ImmunoCAP. IgE reactivity to rApi m 1, rApi m 2, rApi m 3, nApi m 4, rApi m 5, and rApi m 10 was detected in 72.2%, 47.9%, 50.0%, 22.9%, 58.3%, and 61.8% of the patients with HBV allergy, respectively. Positive results to at least 1 HBV allergen were detected in 94.4%. IgE reactivity to Api m 3, Api m 10, or both was detected in 68.0% and represented the only HBV allergen-specific IgE in 5% of the patients. Limited inhibition of IgE binding by therapeutic HBV and limited induction of Api m 3- and Api m 10-specific IgG4 in patients obtaining immunotherapy supports recent reports on the underrepresentation of these allergens in therapeutic HBV preparations. Analysis of a panel of CCD-free HBV allergens improved diagnostic sensitivity compared with use of rApi m 1 alone, identified additional major allergens, and revealed sensitizations to allergens that have been reported to be absent or underrepresented in therapeutic HBV preparations. Copyright © 2014 The Authors. Published by Mosby, Inc. All rights reserved.

Pharma Websites and "Professionals-Only" Information: The Implications for Patient Trust and Autonomy.

Science.gov (United States)

Graber, Mark Alan; Hershkop, Eliyakim; Graber, Rachel Ilana

2017-05-24

Access to information is critical to a patient's valid exercise of autonomy. One increasingly important source of medical information is the Internet. Individuals often turn to drug company ("pharma") websites to look for drug information. The objective of this study was to determine whether there is information on pharma websites that is embargoed: Is there information that is hidden from the patient unless she attests to being a health care provider? We discuss the implications of our findings for health care ethics. We reviewed a convenience sample of 40 pharma websites for "professionals-only" areas and determined whether access to those areas was restricted, requiring attestation that the user is a health care professional in the United States. Of the 40 websites reviewed, 38 had information that was labeled for health care professionals-only. Of these, 24 required the user to certify their status as a health care provider before they were able to access this "hidden" information. Many pharma websites include information in a "professionals-only" section. Of these, the majority require attestation that the user is a health care professional before they can access the information. This leaves patients with two bad choices: (1) not accessing the information or (2) lying about being a health care professional. Both of these outcomes are unacceptable. In the first instance, the patient's access to information is limited, potentially impairing their health and their ability to make reasonable and well-informed decisions. In the second instance, they may be induced to lie in a medical setting. "Teaching" patients to lie may have adverse consequences for the provider-patient relationship. ©Mark Alan Graber, Eliyakim Hershkop, Rachel Ilana Graber. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 24.05.2017.

Relationship between the physical and psychosocial conditions of postoperative gastrointestinal cancer patients and their responses to an informational material

Directory of Open Access Journals (Sweden)

Michiyo Mizuno

2017-01-01

Full Text Available Objective: Postoperative patients with gastrointestinal (GI cancer have multiple adaptation tasks and care needs to improve their quality of life (QOL. Whether their supportive care needs differ according to their physical and psychosocial conditions is unclear. This study investigated patients' (1 physical and psychosocial conditions (QOL, fatigue, anxiety, cognitive plight, and resilience and (2 responses to an informational booklet describing cancer patients' problems and adaptation tasks, and examined the association between the two factors. Methods: A questionnaire survey was conducted to postoperative patients with GI cancer. Results: The mean age of the 69 respondents was 63 years; 59.4% of the respondents were men. Nine patients who did not read the booklet showed high fatigue and cognitive plight and low QOL. The patients (36.2% who chose “I vaguely understood the content” showed low scores for resilience and cognitive plight while those (8.5% who chose “I will deal with my tasks as described in the scenarios” showed high scores for both of these variables. Conclusions: The condition of some patients continued to be highly affected by their cancer. In terms of understanding the contents of the booklet, resilience was significant, and cognitive plight did not necessarily have a negative impact. The provision of information by means of a booklet might not be suitable for patients who are highly affected by their cancer. Patients may need additional support to be able to make good use of the information provided in such a booklet.

What is the gold standard for comprehensive interinstitutional communication of perioperative information for thyroid cancer patients? A comparison of existing electronic health records with the current American Thyroid Association recommendations.

Science.gov (United States)

Dos Reis, Laura L; Tuttle, R Michael; Alon, Eran; Bergman, Donald A; Bernet, Victor; Brett, Elise M; Cobin, Rhoda; Doherty, Gerard; Harris, Jeffrey R; Klopper, Joshua; Lee, Stephanie L; Lupo, Mark; Milas, Mira; Machac, Josef; Mechanick, Jeffrey I; Orloff, Lisa; Randolph, Gregory; Ross, Douglas S; Smallridge, Robert C; Terris, David James; Tufano, Ralph P; Mehra, Saral; Scherl, Sophie; Clain, Jason B; Urken, Mark L

2014-10-01

Appropriate management of well-differentiated thyroid cancer requires treating clinicians to have access to critical elements of the patient's presentation, surgical management, postoperative course, and pathologic assessment. Electronic health records (EHRs) provide an effective method for the storage and transmission of patient information, although most commercially available EHRs are not intended to be disease-specific. In addition, there are significant challenges for the sharing of relevant clinical information when providers involved in the care of a patient with thyroid cancer are not connected by a common EHR. In 2012, the American Thyroid Association (ATA) defined the critical elements for optimal interclinician communication in a position paper entitled, "The Essential Elements of Interdisciplinary Communication of Perioperative Information for Patients Undergoing Thyroid Cancer Surgery." We present a field-by-field comparison of the ATA's essential elements as applied to three contemporary electronic reporting systems: the Thyroid Surgery e-Form from Memorial Sloan-Kettering Cancer Center (MSKCC), the Alberta WebSMR from the University of Calgary, and the Thyroid Cancer Care Collaborative (TCCC). The MSKCC e-form fulfills 21 of 32 intraoperative fields and includes an additional 14 fields not specifically mentioned in the ATA's report. The Alberta WebSMR fulfills 45 of 82 preoperative and intraoperative fields outlined by the ATA and includes 13 additional fields. The TCCC fulfills 117 of 120 fields outlined by the ATA and includes 23 additional fields. Effective management of thyroid cancer is a highly collaborative, multidisciplinary effort. The patient information that factors into clinical decisions about thyroid cancer is complex. For these reasons, EHRs are particularly favorable for the management of patients with thyroid cancer. The MSKCC Thyroid Surgery e-Form, the Alberta WebSMR, and the TCCC each meet all of the general recommendations for

An exploratory study on the information needs of prostate cancer patients and their partners

Directory of Open Access Journals (Sweden)

Angelos P. Kassianos

2016-06-01

Full Text Available The aim of this study is to explore the information needs of men with prostate cancer and their partners retrospectively at various points in the treatment process. An online questionnaire was used to collect information from men with prostate cancer and their partners about information needs, and when these developed. Readers of a Prostate Care Cookbook and members of a Prostate Cancer Charity were invited to participate: 73 men with prostate cancer and 25 partners completed the questionnaire. Responses showed that participants develop their information needs close to diagnosis. Less educated men with prostate cancer and partners developed their needs closer to the time after diagnosis than those with higher education. Partners develop an interest on information related to treatment and interaction earlier than patients. Patients prioritised treatment and disease-specific information. Patients and partners differ in how their information needs develop. Medical information is prioritized by patients as opposed to practical information by partners. Health care provision can be tailored to meet the different needs of prostate cancer patients and their partners at different times in the treatment process

Quality and readability of online patient information regarding sclerotherapy for venous malformations.

Science.gov (United States)

Pass, Jonathan H; Patel, Amani H; Stuart, Sam; Barnacle, Alex M; Patel, Premal A

2018-05-01

Patients often use the internet as a source of information about their condition and treatments. However, this information is unregulated and varies in quality. To evaluate the readability and quality of online information for pediatric and adult patients and caregivers regarding sclerotherapy for venous malformations. "Venous malformation sclerotherapy" was entered into Google, and results were reviewed until 20 sites that satisfied predefined inclusion criteria were identified. Scientific and non-patient-focused web pages were excluded. Readability was assessed using the Flesch Reading Ease Score and American Medical Association reading difficulty recommendations and quality was assessed using Journal of the American Medical Association standards and assessing if the site displayed HONcode (Health on the Net Code) certification. Assessment of the breadth of relevant information was made using a predefined checklist. Forty-nine search engine results were reviewed before 20 sites were identified for analysis. Average Flesch Reading Ease Score was 44 (range: 24.2-70.1), representing a "fairly difficult" reading level. None of the sites had a Flesch Reading Ease Score meeting the American Medical Association recommendation of 80-90. Only one site met all four Journal of the American Medical Association quality criteria (average: 2.1). None of the sites displayed a HONcode seal. The information most frequently found was: sclerotherapy is performed by radiologists, multiple treatments may be needed and surgery is an alternative treatment. Online information regarding sclerotherapy for venous malformations is heterogeneous in quality and breadth of information, and does not meet readability recommendations for patient information. Radiologists should be aware of and account for this when meeting patients.

Survivorship Care Plan Information Needs: Perspectives of Safety-Net Breast Cancer Patients.

Science.gov (United States)

Burke, Nancy J; Napoles, Tessa M; Banks, Priscilla J; Orenstein, Fern S; Luce, Judith A; Joseph, Galen

2016-01-01

Despite the Institute of Medicine's (IOM) 2005 recommendation, few care organizations have instituted standard survivorship care plans (SCPs). Low health literacy and low English proficiency are important factors to consider in SCP development. Our study aimed to identify information needs and survivorship care plan preferences of low literacy, multi-lingual patients to support the transition from oncology to primary care and ongoing learning in survivorship. We conducted focus groups in five languages with African American, Latina, Russian, Filipina, White, and Chinese medically underserved breast cancer patients. Topics explored included the transition to primary care, access to information, knowledge of treatment history, and perspectives on SCPs. Analysis of focus group data identified three themes: 1) the need for information and education on the transition between "active treatment" and "survivorship"; 2) information needed (and often not obtained) from providers; and 3) perspectives on SCP content and delivery. Our data point to the need to develop a process as well as written information for medically underserved breast cancer patients. An SCP document will not replace direct communication with providers about treatment, symptom management and transition, a communication that is missing in participating safety-net patients' experiences of cancer care. Women turned to peer support and community-based organizations in the absence of information from providers. "Clear and effective" communication of survivorship care for safety-net patients requires dedicated staff trained to address wide-ranging information needs and uncertainties.

Perceived need for information of patients with haematological malignancies: a literature review

NARCIS (Netherlands)

Rood, J.A.J.; Eeltink, C.M.; van Zuuren, F.J.; Verdonck-de Leeuw, I.M.; Huijgens, P.C.

2015-01-01

Aims and objectives: To provide insight into the perceived need for information of patients with haematological malignancies. Background: Providing timely and accurate information to patients diagnosed with a haematological malignancy is a challenge in clinical practice; treatment often has to start

Perceived need for information of patients with haematological malignancies: a literature review.

NARCIS (Netherlands)

Rood, J.A.; Eeltink, C.M.; van Zuuren, F.J.; de Leeuw, I.M.; Huijgens, P.C.

2015-01-01

Aims and objectives: To provide insight into the perceived need for information of patients with haematological malignancies. Background: Providing timely and accurate information to patients diagnosed with a haematological malignancy is a challenge in clinical practice; treatment often has to start

Characteristics of patients with missing information on stage: a population-based study of patients diagnosed with colon, lung or breast cancer in England in 2013.

Science.gov (United States)

Di Girolamo, Chiara; Walters, Sarah; Benitez Majano, Sara; Rachet, Bernard; Coleman, Michel P; Njagi, Edmund Njeru; Morris, Melanie

2018-05-02

Stage is a key predictor of cancer survival. Complete cancer staging is vital for understanding outcomes at population level and monitoring the efficacy of early diagnosis initiatives. Cancer registries usually collect details of the disease extent but staging information may be missing because a stage was never assigned to a patient or because it was not included in cancer registration records. Missing stage information introduce methodological difficulties for analysis and interpretation of results. We describe the associations between missing stage and socio-demographic and clinical characteristics of patients diagnosed with colon, lung or breast cancer in England in 2013. We assess how these associations change when completeness is high, and administrative issues are assumed to be minimal. We estimate the amount of avoidable missing stage data if high levels of completeness reached by some Clinical Commissioning Groups (CCGs), were achieved nationally. Individual cancer records were retrieved from the National Cancer Registration and linked to the Routes to Diagnosis and Hospital Episode Statistics datasets to obtain additional clinical information. We used multivariable beta binomial regression models to estimate the strength of the association between socio-demographic and clinical characteristics of patients and missing stage and to derive the amount of avoidable missing stage. Multivariable modelling showed that old age was associated with missing stage irrespective of the cancer site and independent of comorbidity score, short-term mortality and patient characteristics. This remained true for patients in the CCGs with high completeness. Applying the results from these CCGs to the whole cohort showed that approximately 70% of missing stage information was potentially avoidable. Missing stage was more frequent in older patients, including those residing in CCGs with high completeness. This disadvantage for older patients was not explained fully by the

Guidelines for patient information in nuclear medicine

International Nuclear Information System (INIS)

Anon.

2010-01-01

This guide for patients information in nuclear medicine is organised in the following manner: what is a medical examination in nuclear medicine, the preparation and the duration of the examination, the possible risks and the radiation doses, pregnancy, delayed menstruation and nursing and what to do after the examination. (N.C.)

Identifying Measures Used for Assessing Quality of YouTube Videos with Patient Health Information: A Review of Current Literature.

Science.gov (United States)

Gabarron, Elia; Fernandez-Luque, Luis; Armayones, Manuel; Lau, Annie Ys

2013-02-28

Recent publications on YouTube have advocated its potential for patient education. However, a reliable description of what could be considered quality information for patient education on YouTube is missing. To identify topics associated with the concept of quality information for patient education on YouTube in the scientific literature. A literature review was performed in MEDLINE, ISI Web of Knowledge, Scopus, and PsychINFO. Abstract selection was first conducted by two independent reviewers; discrepancies were discussed in a second abstract review with two additional independent reviewers. Full text of selected papers were analyzed looking for concepts, definitions, and topics used by its authors that focused on the quality of information on YouTube for patient education. In total, 456 abstracts were extracted and 13 papers meeting eligibility criteria were analyzed. Concepts identified related to quality of information for patient education are categorized as expert-driven, popularity-driven, or heuristic-driven measures. These include (in descending order): (1) quality of content in 10/13 (77%), (2) view count in 9/13 (69%), (3) health professional opinion in 8/13 (62%), (4) adequate length or duration in 6/13 (46%), (5) public ratings in 5/13 (39%), (6) adequate title, tags, and description in 5/13 (39%), (7) good description or a comprehensive narrative in 4/13 (31%), (8) evidence-based practices included in video in 4/13 (31%), (9) suitability as a teaching tool in 4/13 (31%), (10) technical quality in 4/13 (31%), (11) credentials provided in video in 4/13 (31%), (12) enough amount of content to identify its objective in 3/13 (23%), and (13) viewership share in 2/13 (15%). Our review confirms that the current topics linked to quality of information for patient education on YouTube are unclear and not standardized. Although expert-driven, popularity-driven, or heuristic-driven measures are used as proxies to estimate the quality of video information

The Patient-Reported Information Multidimensional Exploration (PRIME) Framework for Investigating Emotions and Other Factors of Prostate Cancer Patients with Low Intermediate Risk Based on Online Cancer Support Group Discussions.

Science.gov (United States)

Bandaragoda, Tharindu; Ranasinghe, Weranja; Adikari, Achini; de Silva, Daswin; Lawrentschuk, Nathan; Alahakoon, Damminda; Persad, Raj; Bolton, Damien

2018-06-01

This study aimed to use the Patient Reported Information Multidimensional Exploration (PRIME) framework, a novel ensemble of machine-learning and deep-learning algorithms, to extract, analyze, and correlate self-reported information from Online Cancer Support Groups (OCSG) by patients (and partners of patients) with low intermediate-risk prostate cancer (PCa) undergoing radical prostatectomy (RP), external beam radiotherapy (EBRT), and active surveillance (AS), and to investigate its efficacy in quality-of-life (QoL) and emotion measures. From patient-reported information on 10 OCSG, the PRIME framework automatically filtered and extracted conversations on low intermediate-risk PCa with active user participation. Side effects as well as emotional and QoL outcomes for 6084 patients were analyzed. Side-effect profiles differed between the methods analyzed, with men after RP having more urinary and sexual side effects and men after EBRT having more bowel symptoms. Key findings from the analysis of emotional expressions showed that PCa patients younger than 40 years expressed significantly high positive and negative emotions compared with other age groups, that partners of patients expressed more negative emotions than the patients, and that selected cohorts ( 70 years, partners of patients) have frequently used the same terms to express their emotions, which is indicative of QoL issues specific to those cohorts. Despite recent advances in patient-centerd care, patient emotions are largely overlooked, especially in younger men with a diagnosis of PCa and their partners. The authors present a novel approach, the PRIME framework, to extract, analyze, and correlate key patient factors. This framework improves understanding of QoL and identifies low intermediate-risk PCa patients who require additional support.

Impaired information processing speed and attention allocation in multiple sclerosis patients versus controls: a high-density EEG study.

LENUS (Irish Health Repository)

Whelan, R

2012-02-01

BACKGROUND: The no-go P3a is a variant of the P300 event-related potential (ERP) that indexes speed of information processing and attention allocation. The aim of this study was to compare ERP findings with results from the paced auditory serial addition test (PASAT) and to quantify latency, amplitude and topographical differences in P3a ERP components between multiple sclerosis (MS) patients and controls. PATIENTS AND METHODS: Seventy-four subjects (20 relapsing remitting (RRMS) patients, 20 secondary progressive (SPMS) patients and 34 controls) completed a three-stimulus oddball paradigm (target, standard, and non-target). Subjects participated in separate visual and auditory tasks while data were recorded from 134 EEG channels. Latency differences were tested using an ANCOVA. Topographical differences were tested using statistical parametric mapping. RESULTS: Visual P3a amplitude correlated with PASAT score in all MS patients over frontal and parietal areas. There were significant differences in latency, amplitude, and topography between MS patients and controls in the visual condition. RRMS and SPMS patients differed in visual P3a latency and amplitude at frontal and parietal scalp regions. In the auditory condition, there were latency differences between MS patients and controls only over the parietal region. CONCLUSION: The present results demonstrate that information processing speed and attention allocation are impaired in MS.

50 CFR 23.25 - What additional information is required on a non-Party CITES document?

Science.gov (United States)

2010-10-01

... a non-Party CITES document? 23.25 Section 23.25 Wildlife and Fisheries UNITED STATES FISH AND... IN ENDANGERED SPECIES OF WILD FAUNA AND FLORA (CITES) Prohibitions, Exemptions, and Requirements § 23.25 What additional information is required on a non-Party CITES document? (a) Purpose. Under Article...

Informed consent prior to coronary angiography in a real world scenario: what do patients remember?

Directory of Open Access Journals (Sweden)

Aslihan Eran

Full Text Available BACKGROUND: Patients' informed consent is legally essential before elective invasive cardiac angiography (CA and successive intervention can be done. It is unknown to what extent patients can remember previous detailed information given by a specially trained doctor in an optimal scenario as compared to standard care. METHODOLOGY/PRINCIPAL FINDINGS: In this prospective cohort study 150 consecutive in-patients and 50 out-patients were included before elective CA was initiated. The informed consent was provided and documented in in-patients by trained and instructed physicians the day before CA. In contrast, out-patients received standard information by different not trained physicians, who did not know about this investigation. All patients had to sign a form stating that enough information had been given and all questions had been answered sufficiently. One hour before CA an assessment of the patients' knowledge about CA was performed using a standard point-by-point questionnaire by another independent physician. The supplied information was composed of 12 potential complications, 3 general, 4 periprocedural and 4 procedural aspects. 95% of the patients felt that they had been well and sufficiently informed. Less than half of the potential complications could be remembered by the patients and more patients could remember less serious than life-threatening complications (27.9±8.8% vs. 47.1±11.0%; p<0.001. Even obvious complications like local bleeding could not be remembered by 35% of in-patients and 36% of out-patients (p = 0.87. Surprisingly, there were only a few knowledge differences between in- and out-patients. CONCLUSIONS: The knowledge about CA of patients is vague when they give their informed consent. Even structured information given by a specially trained physician did not increase this knowledge.

Ethical Information Transparency and Sexually Transmitted Infections.

Science.gov (United States)

Feltz, Adam

2015-01-01

Shared decision making is intended to help protect patient autonomy while satisfying the demands of beneficence. In shared decision making, information is shared between health care professional and patient. The sharing of information presents new and practical problems about how much information to share and how transparent that information should be. Sharing information also allows for subtle paternalistic strategies to be employed to "nudge" the patient in a desired direction. These problems are illustrated in two experiments. Experiment 1 (N = 146) suggested that positively framed messages increased the strength of judgments about whether a patient with HIV should designate a surrogate compared to a negatively framed message. A simple decision aid did not reliably reduce this effect. Experiment 2 (N = 492) replicated these effects. In addition, Experiment 2 suggested that providing some additional information (e.g., about surrogate decision making accuracy) can reduce tendencies to think that one with AIDS should designate a surrogate. These results indicate that in some circumstances, nudges (e.g., framing) influence judgments in ways that non-nudging interventions (e.g., simple graphs) do not. While non-nudging interventions are generally preferable, careful thought is required for determining the relative benefits and costs associated with information transparency and persuasion.

Patient-reported outcomes, patient-reported information: from randomized controlled trials to the social web and beyond.

Science.gov (United States)

Baldwin, Mike; Spong, Andrew; Doward, Lynda; Gnanasakthy, Ari

2011-01-01

Internet communication is developing. Social networking sites enable patients to publish and receive communications very easily. Many stakeholders, including patients, are using these media to find new ways to make sense of diseases, to find and discuss treatments, and to give support to patients and their caregivers. We argue for a new definition of patient-reported information (PRI), which differs from the usual patient-reported outcomes (PRO). These new emergent data from the social web have important implications for decision making, at both an individual and a population level. We discuss new emergent technologies that will help aggregate this information and discuss how this will be assessed alongside the use of PROs in randomized controlled trials and how these new emergent data will be one facet of changing the relationship between the various stakeholders in achieving better co-created health.

Towards a new kind of patient information leaflet?

DEFF Research Database (Denmark)

Fage-Butler, Antoinette Mary

There is general consensus amongst patients, academics and regulatory agencies that mandatory PILs, which accompany all medication in the EU, do not communicate effectively with patients. This is problematic as patients have stated that they want to receive information on their medication; they are...... with the interactive situation (Holmström & Röing, 2010), for the medium of print. I performed such a translation by considering the affordances of print as opposed to live interaction, developing the evaluative optic of patient centeredness for texts. The dissertation takes a discursive approach, employing.......g. treatments for rheumatoid arthritis and depression) than for minor, acute, physical conditions (e.g. indigestion and bacterial eye infections). The main practical implication of this finding is that the appropriateness of including greater patient centeredness in PILs seems contingent on the nature...

Does Media Use Result in More Active Communicators? Differences Between Native Dutch and Turkish-Dutch Patients in Information-Seeking Behavior and Participation During Consultations With General Practitioners.

Science.gov (United States)

Schinkel, Sanne; Van Weert, Julia C M; Kester, Jorrit A M; Smit, Edith G; Schouten, Barbara C

2015-08-01

This study investigates differences between native Dutch and Turkish-Dutch patients with respect to media usage before and patient participation during medical consultations with general practitioners. In addition, the authors assessed the relation between patient participation and communication outcomes. The patients were recruited in the waiting rooms of general practitioners, and 191 patients (117 native Dutch, 74 Turkish-Dutch) completed pre- and postconsultation questionnaires. Of this sample, 120 patients (62.8%; 82 native Dutch, 38 Turkish-Dutch) agreed to have their consultations recorded to measure patient participation. Compared with Turkish-Dutch patients of similar educational levels, results showed that native Dutch patients used different media to search for information, participated to a greater extent during their consultations and were more responsive to their general practitioner. With respect to the Turkish-Dutch patients, media usage was related to increased patient participation, which was correlated with having fewer unfulfilled information needs; however, these relations were not found in the native Dutch patient sample. In conclusion, interventions that enhance participation among ethnic minority patients will better fulfill informational needs when such interventions stimulate information-seeking behavior in that group before a medical consultation.

[Internet as an information source for health in primary care patients and its influence on the physician-patient relationship].

Science.gov (United States)

Marin-Torres, Viviana; Valverde Aliaga, Justo; Sánchez Miró, Ignacio; Sáenz Del Castillo Vicente, María Isabel; Polentinos-Castro, Elena; Garrido Barral, Araceli

2013-01-01

To describe the use of the Internet by primary care patients to seek health related information, understand how they are influenced by this information, and evaluate its impact on the doctor-patient relationship. Cross sectional study, through self-administered survey. One urban health center in Madrid. A total of 323 questionnaires were collected from patients between 14 and 75 years old who attended a physician's office for any reason, excluding illiterate patients and those with neurological or psychiatric problems preventing them from completing the survey. Internet usage, ability of the internet to clarify doubts regarding health issues, patient lifestyle changes, socio-demographic variables, and physician's receptivity to the use of internet by patients. 61% (CI95%: 56%-67%) of patients used the Internet as a source of health information: Internet queries were able to address health doubts in 92.4% of users, 53.5% reported that the Internet changed their thinking about their health in at least one instance, 30% made behavioral changes (of which 60.1% discussed these changes with their physician), 44.3% had more questions at the physician's office, and 80.8% believe that the doctor would be willing to talk about the information found on the internet. Using the Internet to find information about health is very common, with positive influence on physician-patient relationship. This may be useful for achieving behavioral changes in patients and can be used as a tool in medical practice. Copyright © 2012 Elsevier España, S.L. All rights reserved.

Patient autonomy and informed consent in critically lll

Directory of Open Access Journals (Sweden)

Todorović Zoran M.

2017-01-01

Full Text Available Patient autonomy has been a cornerstone of contemporary clinical ethics since the Nuremberg trial, especially in American school of bioethics. Topic: Patient autonomy has been defined in the Nuremberg Code, and re-defined in the Declaration of Helsinki, Belmont Report and Barcelona Declaration. Founders and followers of the rights-oriented bioethics (for example, Hellegers, Beauchamp and Childers have established and promoted the patient autonomy as the main principle of bio(medical ethics since 1970s. However, there is a lot of controversy surrounding such a principle, especially in vulnerable patients. We aimed at evaluating the real meaning and value of patient autonomy in critical care settings regarding the communication between health workers and their patients and families. Conclusion: Protection of patients autonomy in critically ill is a complex issue. Careful benefit-risk assessment is needed in order to find the most appropriate way of obtaining the informed consent, proxy consent or to omit or delay it.

The clinical utility of informants' appraisals on prospective and retrospective memory in patients with early Alzheimer's disease.

Directory of Open Access Journals (Sweden)

Yen-Hsuan Hsu

Full Text Available Increasing studies suggest the importance of including prospective memory measures in clinical evaluation of dementia due to its sensitivity and functional relevance. The Prospective and Retrospective Memory Questionnaire (PRQM is originally a self-rated memory inventory that offers a direct comparison between prospective and episodic memory. However, the informant's report has been recognized as a more valid source of cognitive complaints. We thus aimed to examine the validity of the informant-rated form of the PRMQ in assessing memory function of the patients and in detecting individuals with early dementia. The informants of 140 neurological outpatients with memory complaints completed the Taiwan version of the PRMQ. Tests of prospective memory, short-term memory, and general cognitive ability were also administered to non-demented participants and patients with early stages of Alzheimer's disease (AD. Results showed significant relationships between the PRMQ ratings and objective cognitive measures, and showed that higher ratings on the PRMQ were associated with increasing odds of greater dementia severity. Receiver operative characteristic (ROC curves showed an adequate ability of the PRMQ to identify patients with dementia (93% sensitivity and 84% specificity. Hierarchical regression revealed that the PRMQ has additional explanatory power for dementia status after controlling for age, education and objective memory test results, and that the prospective memory subscale owns predictive value for dementia beyond the retrospective memory subscale. The present study demonstrated the external validity and diagnostic value of informants' evaluation of their respective patients' prospective and retrospective memory functioning, and highlighted the important role of prospective memory in early dementia detection. The proxy-version of the PRMQ is a useful tool that captures prospective and episodic memory problems in patients with early AD, in

Using and Disclosing Confidential Patient Information and The English Common Law: What are the Information Requirements of a Valid Consent?

Science.gov (United States)

Chico, Victoria; Taylor, Mark J

2018-02-01

The National Health Service in England and Wales is dependent upon the flow of confidential patient data. In the context of consent to the use of patient health data, insistence on the requirements of an 'informed' consent that are difficult to achieve will drive reliance on alternatives to consent. Here we argue that one can obtain a valid consent to the disclosure of confidential patient data, such that this disclosure would not amount to a breach of the common law duty of confidentiality, having provided less information than would typically be associated with an 'informed consent'. This position protects consent as a practicable legal basis for disclosure from debilitating uncertainty or impracticability and, perhaps counter-intuitively, promotes patient autonomy.

Development of an Online, Evidence-Based Patient Information Portal for Congenital Heart Disease: A Pilot Study

Directory of Open Access Journals (Sweden)

Jonathan R. G. Etnel

2017-05-01

Full Text Available ObjectivesIn response to an increased need for patient information on congenital heart disease in the Netherlands, we initiated a nationwide initiative to develop an online, evidence-based patient information portal, starting with a pilot project aimed at the subgroup of patients with congenital aortic and pulmonary valve disease.Methods and resultsWe developed an information portal that aims to (1 improve patient knowledge and involvement and to subsequently reduce anxiety and decisional conflict and improve mental quality of life and (2 to support physicians in informing and communicating with their patients. The information portal was developed according to the systematic International Patient Decision Aid Standards development process employing Delphi techniques by a multidisciplinary workgroup of pediatric and adult congenital cardiologists, a congenital cardiothoracic surgeon, a psychologist, an epidemiologist, a patient representative, and web and industrial design experts. First, patients and physicians were surveyed and interviewed to assess the current state of patient information and explore their preferences and needs to determine the focus for the development of the information portal. We found that patient knowledge and numeracy are limited, reliable information is scarce, physicians inform patients selectively and patient involvement is suboptimal, and there is a need for more reliable, tailored, and multi-faceted information. Based on the findings of these surveys and interviews, a patient-tailored information portal was designed that presents evidence-based disease- and age-specific medical and psychosocial information about diagnosis, treatment, prognosis, and impact on daily life in a manner that is comprehensible and digestible for patients and that meets the needs expressed by both patients and physicians. The effect of the website on patient outcome is currently being assessed in a multicenter stepped-wedge implementation

Patient and nurse safety: how information technology makes a difference.