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

Research output: Contribution to journalArticlepeer-review

Original languageEnglish
JournalDigestive Diseases and Sciences
DOIs
E-pub ahead of print19 Jun 2021

Bibliographical note

Funding Information: This work was supported 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. Publisher Copyright: © 2021, The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature. Copyright: Copyright 2021 Elsevier B.V., All rights reserved.

King's Authors

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.

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