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Patient Strategies for Managing the Vicious Cycle of Fatigue, Pain and Urgency in Inflammatory Bowel Disease: Impact, Planning and Support

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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.

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Acknowledgments

The authors would like to thank Crohn’s & Colitis UK, and colleagues at Guy’s & St Thomas’ NHS Trust, St Mark’s Hospital Harrow, and Salford Royal NHS Trust for their assistance with organising and hosting the focus groups. All authors have approved the final version of the article, including the authorship list.

Funding

This paper presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research (PGfAR) Programme (Grant Reference Number RP-PG-0216-20001). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Author information

Author notes

  1. Micol Artom

    Present address: NHS Digital, Leeds, UK

  2. Victoria Van Loo

    Present address: University of Nottingham Medical School, Nottingham, UK

Authors and Affiliations

  1. Institute for Lifecourse Development, Faculty of Education, Health and Human Sciences, School of Health Sciences, University of Greenwich (Avery Hill Campus: Southwood Site), Avery Hill Road, London, SE9 2UG, UK

    Lesley Dibley

  2. Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King’s College London, James Clerk Maxwell Building, 57 Waterloo Road, London, SE1 8WA, UK

    Bernadette Khoshaba, Micol Artom, Victoria Van Loo, Louise Sweeney, Jonathan Syred, Sula Windgassen, Georgia Moffatt & Christine Norton

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  1. Lesley Dibley
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Consortia

and members of the IBD-BOOST PPI team

Contributions

CN, LD, BK: Conception and design of the study. LD, BK, MA, VVL, LS, JS, SW: acquisition of data. All authors: analysis and interpretation of data; drafting the article or revising it critically for important intellectual content; final approval of version to be submitted.

Corresponding author

Correspondence to Lesley Dibley.

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Conflict of interest

LD: speaker fees from Janssen, AbbVie and Eli-Lilly; consultancy fees from GL Assessments and Crohn’s & Colitis UK, CN: speaker fees from Ferring, Takeda, and Tillotts Pharma, All other authors declare no conflicts of interest.

Ethical approval

Approval was granted by the UK National Research Ethics Service (Wales Research Ethics Committee 4; Ref: 17/WA/0349). Respondents to recruitment calls received the Participant Information Sheet. Participants agreed to a group consent statement read out at the start of each focus group, and also provided written informed consent immediately before data collection. Participants were reimbursed for expenses incurred by attending the focus groups.

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Dibley, L., Khoshaba, B., Artom, M. et al. Patient Strategies for Managing the Vicious Cycle of Fatigue, Pain and Urgency in Inflammatory Bowel Disease: Impact, Planning and Support. Dig Dis Sci 66, 3330–3342 (2021). https://doi.org/10.1007/s10620-020-06698-1

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  • DOI: https://doi.org/10.1007/s10620-020-06698-1

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