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Patient strategies for managing the vicious cycle of fatigue, pain, and urgency in inflammatory bowel disease: impact, planning and support

Patient strategies for managing the vicious cycle of fatigue, pain, and urgency in inflammatory bowel disease: impact, planning and support

Dibley, Lesley ORCID: 0000-0001-7964-7672, Khoshoba, Bernadette, Artom, Micol, Van Loo, Victoria, Sweeney, Louise, Syred, Jonathan, Windgassen, Sula, Moffatt, Georgia and Norton, Christine (2020) Patient strategies for managing the vicious cycle of fatigue, pain, and urgency in inflammatory bowel disease: impact, planning and support. Digestive Diseases and Sciences. ISSN 0163-2116 (Print), 1573-2568 (Online) (In Press) (doi:https://doi.org/10.1007/s10620-020-06698-1)

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Abstract

Background
Inflammatory bowel disease (IBD) causes inter-related symptoms of fatigue, pain and urgency which can persist in remission.

Aim
To understand how people with IBD experience and self-manage these symptoms and to inform the future development of an online self-management programme.

Methods
Using exploratory qualitative methods, we recruited participants from clinic and community settings. Focus groups, conducted across the UK, were audio-recorded and professionally transcribed. Transcripts were analysed over four rounds using framework analysis. Eight patients were consulted to agree the final structure of data and themes.

Results
Seven focus groups were held; five gave useable data. Twenty-six participants (15 female; ages 21–60 years; disease duration 2–40 years) with Crohn’s disease (n = 10), ulcerative colitis (n = 14) and IBD-unclassified (n = 2) attended one of these five focus groups. Three core themes emerged: The Negative Impact of Symptoms, Positively Taking Control and Seeking and Receiving Support. The persistent, often stark impact of multiple co-existing symptoms on physical and emotional wellbeing can force unwanted adjustments and limitations in working, social and intimate arenas of life. Unpredictable symptoms are challenging and impact each other in negative vicious cycles. Managing diet, pacing, accepting background levels of fatigue, pain and urgency, seeking support, exercising and attending to mental wellbeing, are all perceived as helpful in self-managing symptoms.

Conclusion
Fatigue, pain and urgency are troublesome for patients, especially in combination, suggesting that these should be addressed simultaneously by clinicians. Participants reported several strategies for self-management, providing patient-focused evidence to inform future development of a self-management intervention programme.

Item Type: Article
Uncontrolled Keywords: fatigue, fecal incontinence, inflammatory bowel disease, pain, qualitative, self-management, urgency
Subjects: R Medicine > R Medicine (General)
Faculty / Department / Research Group: Faculty of Education, Health & Human Sciences
Faculty of Education, Health & Human Sciences > Institute for Lifecourse Development
Faculty of Education, Health & Human Sciences > Institute for Lifecourse Development > Centre for Chronic Illness and Ageing
Related URLs:
Last Modified: 24 Mar 2021 11:27
Selected for GREAT 2016: None
Selected for GREAT 2017: None
Selected for GREAT 2018: None
Selected for GREAT 2019: None
Selected for REF2021: None
URI: http://gala.gre.ac.uk/id/eprint/30025

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