N02 The IBD-BOOST programme: developing a digital self-management intervention for symptoms of fatigue, pain and urgency in inflammatory bowel disease
S. Windgassen1, M. Artom2, C. Norton3, L. Sweeney3, R. Moss-Morris2
1King’s College London, Psychological Medicine, London, UK, 2King’s College London, Health Psychology Section, London, UK, 3King’s College London, Florence Nightingale Faculty of Nursing-Midwifery and Palliative Care, London, UK
Background
Fatigue, pain and urgency are among the most commonly reported and burdensome symptoms of inflammatory bowel disease (IBD). A disconnect between symptoms and inflammation has been documented and medical management does not always adequately resolve symptoms. Extensive research shows the relationship between IBD symptoms and psychosocial factors. This poster describes the development of a facilitator-supported, theory-driven, tailored web-based intervention for fatigue, pain and urgency in IBD.
Methods
The Medical Research Council (MRC) guidance and the person-based approach were used to guide intervention development. Literature reviews of psychosocial factors related to fatigue, pain and urgency in IBD and trials of behavioural interventions were used to create a cognitive-behavioural model of symptom perpetuation and impact. The model was tested and refined in large cross-sectional and qualitative studies to understand patients’ experiences of these symptoms and intervention needs. The refined model was mapped onto an intervention logic model to define the psychosocial processes to target in intervention techniques. Patient feedback on the logic model and session content was obtained. Usability of the website was assessed using think-aloud methods and survey data were collected on session content, design and functionality.
Results
87 people with IBD and 68 IBD nurses participated in Patient and Public Involvement activities for intervention development. Five interviews were carried out to develop guiding principles and two focus groups provided feedback on a logic model and session plan. 54 people with IBD and 45 IBD nurses completed an initial discovery online survey. Results indicated preferences to receive facilitator support via email/online-messages rather than telephone. Five focus groups included 68 IBD-nurses to assess barriers/facilitators in supporting the intervention. Desirable functionalities included diagrams/aids, email reminders and links to external resources. 31 people with IBD were included in feasibility and acceptability testing. The final intervention includes 8 core sessions with tasks and 4 symptom-specific sessions, and facilitator support of one 30-minute call and in-site messaging. Core to all sessions is understanding and ‘breaking’ personal ‘vicious cycles’ of symptom interference.
Conclusion
We have used a person-based approach and systematic application of theory, evidence and stakeholder involvement to guide intervention development. BOOST is the first web-based intervention with the primary aim of targeting fatigue, pain and urgency and improving the quality of life of people with IBD. This is now being tested in a large randomised controlled trial.