Developing an Online Program for Self-Management of Fatigue, Pain, and Urgency in Inflammatory Bowel Disease: Patients’ Needs and Wants
Open accessAbstract
Background Inflammatory bowel disease (IBD) is a lifelong relapsing-remitting condition, characterized by troublesome symptoms including fatigue, pain, and bowel urgency. These symptoms can persist even in clinical remission and have a debilitating impact on social, work-related and intimate domains of life. Symptom self-management can be challenging for some patients, who could potentially benefit from an online self-management tool.Aims We aimed to understand patients' symptom self-management strategies and preferred design for a future online symptom self-management intervention.Methods Using exploratory qualitative methods, we conducted focus group and individual interviews with 40 people with IBD recruited from UK clinics and from community-dwelling members of the Crohn's and Colitis UK charity; data were collected using a digital audio recorder, and transcribed and anonymized by a third party (professional) transcriber. We used framework analysis for focus group data and thematic analysis for interview data.Results The data provided three core themes: ways of coping; intervention functionality; and intervention content. Participants attempt to manage all three symptoms simultaneously, recognizing the combined influence of factors such as food, drink, stress, and exercise on all symptoms. They wanted an accessible online intervention functioning across several platforms, with symptom and medication management, and activity-tracking features.Conclusions Patients reported numerous ways of self-managing symptoms of fatigue, pain, and urgency/incontinence related to IBD and expressed their needs for content, design, and functionality of the proposed intervention. Based on this and existing intervention development literature, the IBD-BOOST online self-management intervention has now been developed and is undergoing testing.
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Perspectives shared by participants that an IBD-specific psychological intervention would be particularly valuable close to time of diagnosis was congruent with past research and may be useful in informing best practice models of care.
“Perspectives shared by participants in the current study that an IBD-specific psychological intervention would be particularly valuable close to time of diagnosis was congruent with past research and may be useful in informing best practice models of care (Dober et al., 2021; Fawson et al., 2022; Feeney et al., 2022).”
From Moving Towards Acceptance and Values: A Qualitative Study of ACTforIBD Compared to IBD Psychoeducation (2024) · cites this paper as Fawson et al., 2022
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References 53 · Cited by 38
- Authors
- Fawson, S., Dibley, L., Smith, K., Batista, J., Artom, M., Windgassen, S., Syred, J., Moss-Morris, R., & Norton, C.
- Affiliations
- King's College London (GB)
- University of Greenwich (GB)
- Corresponding author
- Dibley, Lesley
- ORCID
- Venue
- Digestive Diseases and Sciences
- Published
- 2021-06-19
- Volume
- 67
- Issue
- 7
- Pages
- 2813-2826
- ISSN
- 0163-2116 (ISSN-L)
- 1573-2568
- PMC
- PMC8214381
- OpenAlex
- W3169656683
- Cited by
- 38
- References
- 53
- Citations by year
- 2026: 6 · 2025: 11 · 2024: 13 · 2023: 6 · 2022: 1 · 2021: 1
- FWCI
- 2.97
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- Locations
- Digestive Diseases and Sciences (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Research Portal (King's College London) (publishedVersion, other-oa)
- Greenwich Academic Literature Archive (University of Greenwich) (acceptedVersion)
- Funders
- Programme Grants for Applied Research (RP-PG-0216-20001)
- Topics
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Inflammatory Bowel Disease
- Health Sciences › Health Professions › General Health Professions › Mobile Health and mHealth Applications
- Social Sciences › Psychology › Applied Psychology › Digital Mental Health Interventions
- Keywords
- inflammatory bowel disease, Crohn's disease, ulcerative colitis, fatigue, pain, bowel urgency, incontinence, symptom self-management, patient needs, coping strategies, intervention design, digital health
- MeSH terms
- Self-Management, Crohn Disease, Fatigue, Humans, Pain, Inflammatory Bowel Diseases
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