Using a Person-Centred Approach to Adapt a Digital Therapy for Inflammatory Bowel Disease (COMPASS-IBD).

BACKGROUND

Patient and public involvement (PPI) enhances the relevance, acceptability and implementation potential of interventions.

OBJECTIVE

To describe the adaptation of a cognitive-behavioural therapy (CBT) based intervention (COMPASS) into an inflammatory bowel disease (IBD)-specific version (COMPASS-IBD), in partnership with individuals with IBD and healthcare professionals (HCPs).

SETTING AND

PARTICIPANTS

Twelve individuals with IBD, recruited through previous COMPASS PPI networks and wider outreach to the IBD community, and three HCPs contributed to an iterative adaptation process.

DESIGN

A four-stage iterative adaptation process was conducted. First, an online workshop, one-to-one calls and clinic observations were conducted to explore the specific challenges of living with IBD and insights from these discussions were then used to guide adaptations. Proposed changes were reviewed through email and phone correspondence with PPI to check for acceptability and suitability. Finally, a post-process reflection with collaborators was undertaken to inform future work.

RESULTS

Key themes included the invisible and unpredictable nature of IBD, symptom burden, stigma and isolation. These informed IBD-specific patient stories and refinement of content to enhance relevance and specificity. Sixty-four recommendations were made, of which 56 were implemented.

CONCLUSIONS

Collaboration with PPI and HCP partners identified IBD-specific needs and ensured that COMPASS-IBD was acceptable and contextually appropriate. Embedding lived experience within intervention adaption may help to enhance implementation and engagement for interventions supporting individuals living with long-term health conditions.

LIVED EXPERIENCE OR PUBLIC CONTRIBUTION: Our PPI collaborators were involved throughout the study, via an online workshop, one-to-one calls, and follow up email correspondence. They identified key challenges of living with IBD, reviewed adaptations and provided iterative feedback on changes to COMPASS-IBD. Their input shaped the patient stories, programme content, and the framing of IBD-specific issues, ensuring the relevance, tone and acceptability of the adapted intervention. PPI contributors also supported with the interpretation of findings and refinement of the manuscript. This work documents a meaningful partnership in the adaptation of a digital intervention.

CLINICAL TRIALS REGISTRATION: The wider study was registered on ClinicalTrials.gov (NCT05330299).