Group CBT Intervention for Refractory Coeliac Disease
Research type
Research Study
Full title
Gluten-Free Refractory CBT: an online Cognitive Behaviour Therapy (CBT) group intervention designed to reduce anxiety in adults with refractory coeliac disease
IRAS ID
345942
Contact name
Melissa/MF Figueiredo
Contact email
Sponsor organisation
University of Surrey
Duration of Study in the UK
1 years, 6 months, 6 days
Research summary
Research Summary
This project aims to design and provide a group-based CBT intervention for individuals diagnosed with RCD from the only two clinics within the UK able to treat RCD. The intervention will be aimed at targeting the management of anxiety in relation to their condition. The study will assess the suitability of this kind of intervention for people with RCD in reducing anxiety levels and improving quality of life. Individuals will be invited to complete the intervention and repeatedly complete outcome measures on anxiety, acceptance and action, quality of life, pain and the gastrointestinal symptom rating scale once prior to the group, halfway after the second session of the group and lastly a month after finishing the group, to monitor change and assess if reduced anxiety and quality of life has been maintained. It is hypothesised that a group-based CBT intervention aimed at individuals with RCD will help reduce anxiety and improve quality of life. This effectiveness study will tell us whether this kind of intervention is acceptable to its intended population and provide a resource currently missing in the coeliac disease field.Lay summary of study results
For people with coeliac disease, it is essential to maintain a diet which is free of foods containing gluten such as wheat, barley and rye. When consumed, gluten causes the experience of uncomfortable symptoms (diarrhoea, constipation and abdominal pain). A rarer form of coeliac disease called refractory coeliac disease (RCD) is more complex, in that people are continuing to experience symptoms despite strict dietary management. Due to persistence of symptoms, those with RCD have an increased risk of developing cancer within the gut and are likely to struggle to maintain wellbeing due to their health. Currently there is no cure for RCD and research surrounding RCD prioritises medical treatment, neglecting awareness of wellbeing. For people with coeliac disease, increased anxiety is commonly reported in research due to challenges faced when trying to avoid gluten-containing foods, for instance, not being able to find food that does not contain gluten or unintentionally consuming food that does contain gluten. In consideration of this research, it is likely that people with RCD also experience anxiety. This study is the first to consider this, as it had worked alongside an individual with RCD, to co-design a cognitive behaviour therapy (CBT) intervention aimed to reduce anxiety. Following online delivery of a CBT-based intervention to participants diagnosed with RCD, the study assessed whether the intervention was feasible and acceptable by; a) delivering the intervention online and offering participation to a wide audience (recruiting from hospital and social media), b) measure anxiety, coeliac disease symptoms and quality of life before, during and after the intervention to evaluate changes in measures and c) request feedback on the intervention. This had informed current research and treatment providers in the NHS that a CBT intervention was feasible to deliver in existing NHS services and acceptable to people with RCD.
REC name
East of England - Cambridge East Research Ethics Committee
REC reference
24/EE/0228
Date of REC Opinion
3 Dec 2024
REC opinion
Further Information Favourable Opinion