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. 2022 Jul;67(7):2813-2826.
doi: 10.1007/s10620-021-07109-9. Epub 2021 Jun 19.

Developing an Online Program for Self-Management of Fatigue, Pain, and Urgency in Inflammatory Bowel Disease: Patients' Needs and Wants

Sophie Fawson  1 , Lesley Dibley  2 , Kaylee Smith  3 , Joanna Batista  3 , Micol Artom  3 , Sula Windgassen  1 , Jonathan Syred  3 , Rona Moss-Morris  1 , Christine Norton  3
Affiliations

Developing an Online Program for Self-Management of Fatigue, Pain, and Urgency in Inflammatory Bowel Disease: Patients' Needs and Wants

Sophie Fawson et al. Dig Dis Sci. 2022 Jul.

Abstract

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.

Keywords: Fatigue; Inflammatory bowel disease; Online; Pain; Self-management; Urgency.

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Conflict of interest statement

All authors have no conflicts of interest to declare.

Figures

Fig. 1
Fig. 1
Data capture and relationship with the previous work; white boxes denote the previous related study [23] and gray boxes denote the current study
Fig. 2
Fig. 2
Patient coping strategies and preferences for content and functionality of an online self-management intervention for the symptoms of fatigue, pain, and urgency/incontinence related to IBD
See this image and copyright information in PMC

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