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How patients are helping to shape a new treatment for anxiety and low mood

COMPASS is an interactive digital therapy programme. In 2021 the research team behind COMPASS looked at how it might treat anxiety and low mood in patients with long-term health conditions.

People with Crohn’s or Colitis worked through the COMPASS programme in their own time at home with some support from a therapist. The study found that people with Crohn’s and Colitis were especially keen to receive COMPASS.

Now, the COMPASS programme is being adapted especially for people with Crohn’s and Colitis. We spoke to the researchers about this process.

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How is COMPASS being adapted specifically for people with Crohn’s, Colitis and other forms of inflammatory bowel disease (IBD)?

After the study, we interviewed people with Crohn’s and Colitis that had taken part in the COMPASS programme. They suggested that a version of COMPASS tailored to tackle the specific challenges of living with Crohn’s or Colitis would be even more effective.

Excitingly, Crohn’s & Colitis UK agreed with our idea and funded our new project – the COMPASS-IBD study.

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This study is testing how we can identify the people in an NHS IBD service with low mood and/or anxiety, and how COMPASS-IBD can support them. This real-world study allows us to explore whether COMPASS-IBD could become part of routine care for IBD patients in the future.

How have people living with Crohn’s and Colitis been involved in shaping the study?

Core to our research team is our Patient and Public Involvement (PPI) group. This is a group of people with lived experience of Crohn’s and Colitis. Our lead PPI member, Harinder Singh is a Research Champion at Crohn’s & Colitis UK, was a co-applicant on our grant application. His experiences of Ulcerative Colitis have been invaluable in guiding us right from the start.

We met with Harinder early on to discuss the study design and provided valuable feedback on how best to approach patients about the study and the COMPASS programme. He also joined our interview panel for recruiting a new researcher into our team. Harinder will continue to work alongside our team, including helping us to reach out to underrepresented communities. The input of these groups is essential to ensure we meet the needs of as many people as possible.

Our PPI group includes an additional 7 members from our original COMPASS trial. They are helping us to tailor COMPASS to be more specific and relevant for Crohn’s and Colitis. In our first PPI workshop in March, we had in-depth discussions to understand the main challenges they face, and how they have learnt to manage these.

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We learnt so much from this workshop. For example, we will be discussing how to manage changes in body image, emotions, dealing with uncertainty, and navigating relationships in our new COMPASS-IBD programme. We so appreciate the groups’ open and honest accounts of the challenges they have faced and overcome.

Our PPI group will continue to work alongside us and make sure our new content is patient-friendly and relevant. We could not do this work without them. We’d encourage anyone interested in research to look out for opportunities to get involved in PPI. Your input ensures that the patient voice is at the centre of our research.