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

TY - JOUR

T1 - Developing an online programme for self-management of fatigue, pain and urgency in inflammatory bowel disease: patients’ needs and wants

AU - Fawson, Sophie

AU - Dibley, Lesley B.

AU - Smith, Kaylee

AU - Batista, Joanna

AU - Artom, Micol

AU - Windgassen, Sula

AU - Syred, Jonathan

AU - Moss-Morris, Rona

AU - Norton, Christine

PY - 2021/6/19

Y1 - 2021/6/19

N2 - 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. AimsWe aimed to understand patients’ symptom self-management strategies and preferred design for a future online symptom self-management intervention. MethodsUsing 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. ResultsThe 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.

AB - 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. AimsWe aimed to understand patients’ symptom self-management strategies and preferred design for a future online symptom self-management intervention. MethodsUsing 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. ResultsThe 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.

KW - Fatigue

KW - Inflammatory bowel disease

KW - online

KW - pain

KW - self-management

KW - Urgency

U2 - 10.1007/s10620-021-07109-9

DO - 10.1007/s10620-021-07109-9

M3 - Article

SN - 0163-2116

JO - Digestive Diseases and Sciences

JF - Digestive Diseases and Sciences

ER -