Patient-identified symptom management techniques to inform the content and functionality of an online self-management programme: an exploratory qualitative study

Abstract Background As part of the IBD-BOOST programme of research (www.ibd-boost.org), we aimed to understand how people manage fatigue, pain and urgency in inflammatory bowel disease (IBD), and their preferences for an online self-management intervention for this triad of symptoms. Methods Using exploratory qualitative methods we recruited people with IBD from clinic and community sources and conducted focus groups and interviews in different UK locations. Focus groups and interviews were facilitated by experienced qualitative researchers, recorded on a digital audio device and professionally transcribed. Participants were asked to talk about the techniques they have found helpful for managing fatigue, pain, and/or urgency, and their preferred design and functionality of an on-line intervention to support self-management. Individual interviews were used to explore and elaborate on issues raised in focus groups in greater depth. We conducted framework analysis of focus group data and applied it over three rounds of analysis. Interview data were analysed thematically and then integrated with the focus group data. Results Thirty-nine participants (16 females; ages 23–60 years) each attended one of five focus groups (N = 3, 7, 6, 6 and 3), or an individual interview (n = 14). Twenty-four had CD, 13 had UC and three had IBD-U. Duration of disease was three–49 years. Three core themes emerged: Participants discussed the importance of learning to manage all three symptoms simultaneously, and of using techniques to track the link between factors such as food, fluids, stress and exercise, and symptoms. They wanted an accessible online intervention which would work across several platforms (mobile phone, tablet, laptop or desktop computer), to include symptom, medication and activity-tracking features, with options for support from IBD clinicians. Conclusion Fatigue, pain, and urgency commonly occur together, and patients want these managed simultaneously, rather than separate interventions for each symptom. Findings are informing the development of online intervention self-management programme, reflecting patient requests regarding content, access, functionality, and usability.