دورية أكاديمية
أعرض في EDS

Identifying and understanding disease burden in patients with inflammatory bowel disease.

التفاصيل البيبلوغرافية
العنوان: Identifying and understanding disease burden in patients with inflammatory bowel disease.
المؤلفون: Christensen KR; Gastroenterology, Copenhagen University Hospital, Herlev and Gentofte, Herlev, Denmark katrine.risager.christensen@regionh.dk.; The Parker Institute, Copenhagen University Hospital Bispebjerg and Frederiksberg, Copenhagen, Denmark., Ainsworth MA; Gastroenterology, Odense University Hospital, Odense, Denmark., Skougaard M; The Parker Institute, Copenhagen University Hospital Bispebjerg and Frederiksberg, Copenhagen, Denmark., Steenholdt C; Gastroenterology, Copenhagen University Hospital, Herlev and Gentofte, Herlev, Denmark., Buhl S; Gastroenterology, Copenhagen University Hospital, Herlev and Gentofte, Herlev, Denmark., Brynskov J; Gastroenterology, Copenhagen University Hospital, Herlev and Gentofte, Herlev, Denmark., Kristensen LE; The Parker Institute, Copenhagen University Hospital Bispebjerg and Frederiksberg, Copenhagen, Denmark., Jørgensen TS; The Parker Institute, Copenhagen University Hospital Bispebjerg and Frederiksberg, Copenhagen, Denmark.
المصدر: BMJ open gastroenterology [BMJ Open Gastroenterol] 2022 Oct; Vol. 9 (1).
نوع المنشور: Journal Article; Research Support, Non-U.S. Gov't
اللغة: English
بيانات الدورية: Publisher: BMJ Publishing Group Ltd & British Society of Gastroenterology Country of Publication: England NLM ID: 101660690 Publication Model: Print Cited Medium: Print ISSN: 2054-4774 (Print) Linking ISSN: 20544774 NLM ISO Abbreviation: BMJ Open Gastroenterol Subsets: MEDLINE
أسماء مطبوعة: Original Publication: [London] : BMJ Publishing Group Ltd & British Society of Gastroenterology, [2014]-
مواضيع طبية MeSH: Colitis, Ulcerative*/epidemiology , Colitis, Ulcerative*/diagnosis , Crohn Disease*/diagnosis , Inflammatory Bowel Diseases*/epidemiology, Humans ; Female ; Adult ; Male ; Cost of Illness ; Fatigue/epidemiology
مستخلص: Objective: Physicians tend to focus on biomedical targets while little is known about issues important to patients. We aimed to identify critical concepts impacting patients with inflammatory bowel disease (IBD).
Design: We performed a survey of patients with IBD in biologic therapy (n=172) and used a validated qualitative method called group concept mapping (GCM) in patient workshops. The survey included 13 questions on attitudes toward symptoms and issues related to IBD. In the eight workshops, patients (n=26) generated statements later clustered into concepts identifying issues impacting a patient's life. Patients ranked the statements.
Results: In the survey, patients' mean age were 40 years (SD 13), 53% were women, and 38% had ulcerative colitis. They identified fatigue (57%) and stool frequency (46%) as the most critical symptoms impacting their daily lives regardless of disease activity. In the GCM workshops with Crohn's disease (n=13) (median age 42 years (IQR 39-51) and 62% were women), 335 statements divided among 10 concepts were generated, and the three most important concepts were 'Positive attitudes', 'Accept and recognition', and 'Sharing knowledge and experiences in life with Crohn's disease'. In the workshops with ulcerative colitis (n=13) (median age 43 years (IQR 36-49) and 69% were women), 408 statements divided into 11 concepts were generated; the most important concepts were 'Take responsibility and control over your life', 'Medication', and 'Everyday life with ulcerative colitis'.
Conclusion: Focusing solely on IBD symptoms, patients identified fatigue and stool frequency to impact daily life the most. However, when investigating the disease burden in a broader perspective beyond classic IBD symptoms, patients identified concepts with focus on emotional health to be most important.
Trial Registration: The Copenhagen University Hospital, Herlev and Gentofte approved the questionnaire and methodology (work-zone no: 18015429).
Competing Interests: Competing interests: KRC participated in an advisory board for Gilead Nordic and received unrestricted grants from Pfizer and Gilead Nordic, and served as a speaker for Janssen Pharmaceuticals. MS received research funding from Eli Lilly and Pfizer. CS served as a speaker and advisory board member for MSD. JB has been a consultant and/or an advisory board member and received fees and/or research grants from AbbVie, Pfizer, MSD, Takeda, Janssen, and Gilead. TSJ served as a speaker and consultant for AbbVie, Pfizer, Roche, Novartis, UCB, Biogen, Gilead, and Eli Lilly. LEK served as a speaker and consultant for Pfizer, AbbVie, Amgen, UCB, Gilead, Biogen, BMS, MSD, Novartis, Eli Lilly, and Janssen and received research grants from Pfizer, AbbVie, UCB, Biogen, Novartis, Eli Lilly, and Janssen. MAA and SB declare no conflicts of interest.
(© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
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فهرسة مساهمة: Keywords: crohn's disease; inflammatory bowel disease; ulcerative colitis
تواريخ الأحداث: Date Created: 20221027 Date Completed: 20221031 Latest Revision: 20221130
رمز التحديث: 20231215
مُعرف محوري في PubMed: PMC9621179
DOI: 10.1136/bmjgast-2022-000994
PMID: 36302557
قاعدة البيانات: MEDLINE
الوصف
تدمد:2054-4774
DOI:10.1136/bmjgast-2022-000994