Co-development of a behavioural intervention to support treatment adherence in young people with inflammatory bowel disease

Abstract

Objectives Treatment adherence in adolescents with Inflammatory Bowel Disease (IBD), ranges from 2%-93%, with the frequency of non-adherence ranging from 3%-57%.1 Non-adherence to a prescribed treatment regimen has significant clinical consequences. This research aimed to develop a novel, user-centred and theory-driven behavioural intervention to support young people (aged 13–18) with IBD adhere to their treatment plan. Methods Findings from a systematic review evaluating treatment adherence interventions for young people with IBD were synthesised with findings from exploratory, qualitative interviews with young people with IBD, parents of young people with IBD and healthcare professionals. Findings were then mapped to psychological constructs from relevant behaviour change theories and behaviour change techniques selected. Following a Behaviour Change Wheel approach,2 a novel intervention was developed, specifically addressing the treatment adherence needs of young people (aged 13–18) with IBD. A series of co-development workshops were conducted with young people (aged 13–18) with IBD. Within these workshops, young people provided feedback on the proposed intervention’s components and delivery, using a variety of participatory methods. Young people’s ideas were incorporated into a revised version of the intervention, aiming to improve its acceptability and feasibility. Further revisions were made in response to feedback collected from parents of young people with IBD. Results A prototype behavioural adherence intervention was co-developed with young people and parents to support treatment adherence in young people with IBD. Ten interactive online modules aimed to increase young people’s confidence to adhere to their treatment plan, support resilience to overcome adherence barriers, assist in the development of health communication skills and generate optimism about the future. Interactive online modules and components within each module can be tailored by the user to suit their own personal adherence challenges. Within each module young people are supported to develop user-centred action plans to improve their treatment adherence behaviours. These plans and corresponding behaviour change strategies are retained within the intervention modules, providing a personalised approach. A parent version of the intervention was also developed to support incremental transfer of responsibility for treatment adherence to young people themselves, as part of their transition to adulthood and adult services. Conclusions The Behaviour Change Wheel approach can be effectively used to co-create a user-centred and theory-driven behavioural intervention with young people. The developed intervention can be tailored to individual needs to support young people’s adherence. Further research is needed to establish the intervention’s feasibility and preliminary effectiveness.