Developing an online programme for self-management of fatigue, pain and urgency in inflammatory bowel disease: patients’ needs and wants

Sophie Fawson, Lesley B. Dibley, Kaylee Smith, Joanna Batista, Micol Artom, Sula Windgassen, Jonathan Syred, Rona Moss-Morris, Christine Norton

Research output: Contribution to journalArticlepeer-review

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Abstract

Background
Inflammatory Bowel Disease (IBD) is a lifelong relapsing-remitting condition; characterised 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 groups and interviews with 40 individuals with IBD recruited from UK clinic and community sources; data were collected using a digital audio recorder, and transcribed and anonymised 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, recognising 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.
Original languageEnglish
Number of pages39
JournalDigestive Diseases and Sciences
Early online date19 Jun 2021
DOIs
Publication statusE-pub ahead of print - 19 Jun 2021

Keywords

  • Fatigue
  • Inflammatory bowel disease
  • online
  • pain
  • self-management
  • Urgency

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