Information needs and concerns of patients with inflammatory bowel disease: what can we learn from participants in a bilingual clinical cohort?
| العنوان: | Information needs and concerns of patients with inflammatory bowel disease: what can we learn from participants in a bilingual clinical cohort? |
|---|---|
| المؤلفون: | Marc Girardin, Bernard Burnand, Gerhard Rogler, Valérie Pittet, Philippe de Saussure, Pierre Michetti, Michel H. Maillard, Carla Vaucher |
| المساهمون: | University of Zurich |
| المصدر: | Plos One, vol. 11, no. 3, pp. e0150620 PLoS ONE, Vol 11, Iss 3, p e0150620 (2016) PLoS ONE |
| سنة النشر: | 2016 |
| مصطلحات موضوعية: | Male, Medical Doctors, Cross-sectional study, Health Care Providers, lcsh:Medicine, Multilingualism, Disease, Severity of Illness Index, Inflammatory bowel disease, Cohort Studies, 0302 clinical medicine, Crohn Disease, Recurrence, Surveys and Questionnaires, Information seeking behavior, Medicine and Health Sciences, Medicine, 030212 general & internal medicine, Computer Networks, lcsh:Science, health care economics and organizations, Multidisciplinary, Pharmaceutics, Post-Traumatic Stress Disorder, Drug Information, digestive, oral, and skin physiology, Gastroenterology, Professional-Patient Relations, Focus Groups, Middle Aged, Anxiety Disorders, humanities, 3. Good health, Professions, 10219 Clinic for Gastroenterology and Hepatology, Needs assessment, Female, 030211 gastroenterology & hepatology, Needs Assessment, Switzerland, Research Article, Cohort study, Adult, Computer and Information Sciences, medicine.medical_specialty, Drug Research and Development, Information Seeking Behavior, Neuropsychiatric Disorders, Information needs, 610 Medicine & health, Gastroenterology and Hepatology, 1100 General Agricultural and Biological Sciences, Neuroses, digestive system, 03 medical and health sciences, Drug Therapy, Patient Education as Topic, Diagnostic Medicine, 1300 General Biochemistry, Genetics and Molecular Biology, Physicians, Mental Health and Psychiatry, Severity of illness, Humans, Intensive care medicine, Psychiatry, Pharmacology, Internet, 1000 Multidisciplinary, business.industry, Inflammatory Bowel Disease, lcsh:R, medicine.disease, digestive system diseases, Health Care, Cross-Sectional Studies, People and Places, Population Groupings, Colitis, Ulcerative, lcsh:Q, business |
| الوصف: | BACKGROUND: Inflammatory Bowel Disease (IBD) patients are confronted with needs and concerns related to their disease. AIM: To explore information expectations of patients included in a national bilingual IBD cohort in Switzerland (SIBDC). METHODS: This is a mixed-methods study, comprising 1) a semi-narrative survey sent to 1506 patients from the SIBDC and 2) two focus groups conducted with 14 patients to explore and assess the relevance of the survey's findings. Data collected within the framework of the SIBDC was used to characterize survey's responders. RESULTS: 728 patients (48%) replied to the survey: 52.5% females, 56% Crohn's disease (CD), 87% secondary/tertiary level educated, 70% full/part-time employed. On average, 47% of patients sought for information, regardless of the disease stage; 27% of them were dissatisfied with information received at the time of first symptoms. During flares, 43% were concerned about drugs and therapies; in remission, 57% had concerns on research and developments; 27% searched for information linked to daily disease management. Information-seeking increased when active disease, for CD with high levels of perceived stress (OR = 2.47; p = 0.003), and for all with higher posttraumatic stress symptoms. The focus groups confirmed a perceived lack of information about general functioning, disease course, treatments and their risks, extra-intestinal symptoms and manifestations. CONCLUSIONS: Information remains insufficient for IBD patients. Lack of information in specific domains can potentially cause stress and hinder detection of symptoms. Better information should be considered as a potentially important component in improving patients' outcomes in IBD. |
| وصف الملف: | 134545.pdf - application/pdf; application/pdf |
| اللغة: | German |
| الوصول الحر: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::826ef805092a69028f05b13e9b31fb57Test https://doi.org/10.5167/uzh-134545Test |
| حقوق: | OPEN |
| رقم الانضمام: | edsair.doi.dedup.....826ef805092a69028f05b13e9b31fb57 |
| قاعدة البيانات: | OpenAIRE |
| الوصف غير متاح. |