ArticleInflammatory bowel diseases2014
The burden of inflammatory bowel disease: a patient-reported qualitative analysis and development of a conceptual model.
Article in Inflammatory bowel diseases, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 78 papers, 5 of them syntheses that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
78 citing papers in PubMed, 5 syntheses or guidelines pooled it.
- Safety and efficacy of advanced combination therapies for treating inflammatory bowel disease in adults: a systematic review and meta-analysis.BMJ open gastroenterology · 2026Pooled it
- Disclosing Inflammatory Bowel Disease: A Systematic Review and Meta-Synthesis Exploring the Experience of, and Barriers and Facilitators to, Self-Disclosure.Journal of clinical psychology in medical settings · 2025Pooled it
- Systematic Literature Review: Ability of the IBDQ-32 to Detect Meaningful Change in Ulcerative Colitis Health Indicators.Inflammatory bowel diseases · 2024Pooled it
- Zinc Deficiency and Therapeutic Value of Zinc Supplementation in Pediatric Gastrointestinal Diseases.Nutrients · 2023Pooled it
- Peer support for carers and patients with inflammatory bowel disease: a systematic review.Systematic reviews · 2022Pooled it
- Patient views about the impact of ulcerative colitis and its management with drug treatment and surgery: a nested qualitative study within the CONSTRUCT trial.BMC gastroenterology · 2019Trial
- Trial
- Exploring Nurses' Practices in Supporting Sexual Wellbeing of People Living With Inflammatory Bowel Disease: An International Qualitative Study.Journal of advanced nursing · 2026Article
- Impact of Menopause and Clinical Considerations in Patients With Inflammatory Bowel Disease.Gastroenterology & hepatology · 2026Article
- CB2R promotes T cell gut homing and exacerbates ileitis in a murine Crohn's model.Inflammatory bowel diseases · 2026Article
- Preferences, Expectations and Management Satisfaction in IBD Patients: A Cross-Sectional Questionnaire-Based Study.Journal of clinical medicine · 2026Article
- A Review of the Use of Mobile Health Interventions in Patients with Inflammatory Bowel Disease.Journal of multidisciplinary healthcare · 2026Review
- Integrated RNA-seq and scRNA-seq to explore the biological mechanisms of mitophagy-related genes in ulcerative colitis.PloS one · 2026Article
- Exploring patient-reported outcome measures to assess symptoms of moderately-to-severely active Crohn's disease in adult and adolescent patients: a qualitative study.Journal of patient-reported outcomes · 2025Article
- Sexual satisfaction and associated factors among patients with inflammatory bowel disease in Japan.Japan journal of nursing science : JJNS · 2025Article
- Article
- Exploring intimacy and family planning in Inflammatory Bowel Diseases: a qualitative study.Annals of medicine · 2024Article
- Designing the Essential Informational Needs of a Smartphone Application for Self-Management of Patients With Inflammatory Bowel Disease.Health science reports · 2024Article
- Patient interpretations of patient-reported outcome measures to assess bowel urgency: qualitative interviews in ulcerative colitis.Journal of patient-reported outcomes · 2024Article
- Knowledge Levels About Inflammatory Bowel Disease Vary Between Healthcare Professional Groups.Digestive diseases and sciences · 2024Article
18 more citing papers are in PubMed but not listed here.
Corrections and comments
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Authors and funding
6 authors.
Funding
Abstract
backgroundThe aim of this study was to describe the impacts of inflammatory bowel disease (IBD) from the patients' perspective and to inform the development of a conceptual model.
methodsFocus groups and one-on-one interviews were undertaken in adult patients with IBD. Transcripts from the focus groups and interviews were analyzed to identify themes and links between themes, assisted by qualitative data software MaxQDA. Themes from the qualitative research were supplemented with those reported in the literature and concepts included in IBD-specific patient-reported outcome measures.
resultsTwenty-seven patients participated. Key physical symptoms included pain, bowel-related symptoms such as frequency, urgency, incontinence, diarrhea, passing blood, and systemic symptoms such as weight loss and fatigue. Participants described continuing and variable symptom experiences. IBD symptoms caused immediate disruption of activities but also had ongoing impacts on daily activities, including dietary restrictions, lifestyle changes, and maintaining close proximity to a toilet. More distal impacts included interference with work, school, parenting, social and leisure activities, relationships, and psychological well-being. The inconvenience of rectal medications, refrigerated biologics, and medication refills emerged as novel burdens not identified in existing patient-reported outcome measures.
conclusionsIBD symptoms cause immediate disruption in activities, but patients may continue to experience some symptoms on a chronic basis. The conceptual model presented here may be useful for identifying target concepts for measurement in future studies in IBD.
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