Co-Development of a Novel Treatment Adherence Intervention for Young People with Inflammatory Bowel Disease (IBD)

Abstract

Rates of treatment non-adherence could be as high as 93% amongst young people with Inflammatory Bowel Disease (IBD). However non-adherence to prescribed treatment plans can have significant clinical consequences for young people with IBD. Subsequently, additional support is needed to help young people maintain their IBD treatment adherence behaviours. Paediatric IBD treatment plans contain multiple complex self-management behaviours, including medication taking and following lifestyle advice. Currently, published interventions solely aim to improve adherence to oral medication among young people with IBD. This thesis details the co-development of a novel online, evidence-based theory-driven user-centred behaviour change intervention to improve treatment adherence in young people (aged 13-18) with IBD. Findings from a systematic review evaluating the effectiveness of treatment interventions as well as outcomes of a framework analysis of young people with IBD’s adherence experiences and support needs, were synthesised and mapped onto psychological constructs. The Behaviour Change Wheel approach informed the intervention’s development, and supported the identification of relevant behaviour change theories and techniques. An online Patient and Public Involvement and Engagement group of young people (aged 13-17) with IBD co-developed the intervention’s components and delivery methods; resulting in novel youth-led intervention functions. To strengthen the intervention’s acceptability, feedback from young people with IBD and their parents were incorporated into the intervention prototype. The co-developed intervention, A Self-led Self-management Intervention to Support Teenagers with IBD (ASSIST-IBD), contains ten interactive modules informed by psychological theory and constructs. ASSIST-IBD aims to empower young people to follow their IBD treatment plan and autonomously perform self-management behaviours. Within each intervention module, young people are supported to develop user-centred action plans to improve their treatment adherence behaviours. This research highlights how co-developing interventions can enrich the intervention development process and result in an acceptable and relevant intervention for young people with IBD.