Designing integrated dietetic and psychological NHS pathways for adults living with coeliac disease

Coeliac disease (CD) is medical condition, where the body attacks its own tissues when gluten is eaten. If left untreated, CD increases risks for weak bones, cancer, and difficulties having children. There is no cure for CD; instead, CD is managed by behaviour change – patients need to follow a strict gluten-free diet (GFD). Whilst this change is essential, the shift to a GFD can be difficult with only 70% of patients being able to do so successfully. Furthermore, managing a strict GFD can be isolating, and there can be heightened anxiety around food, particularly when eating outside the home. In fact, compared to the general population, people with CD have higher rates of anxiety, depression, and eating disorders. So, for patients with CD to live well, both dietetics (e.g. knowledge around food, reading food labels) and psychology (e.g. coping strategies, motivation) have much to offer. However, dietetic support for CD in variable across the UK, and very few services provide any psychological support.

Our researchers will work closely with patients with CD, and healthcare professionals to develop a new way of delivering healthcare. During group workshops we will explore the types of support available in clinical practice, what works and what doesn’t work, perceptions on joined-up dietetic and psychological approaches, and what dietetic and psychological intervention content is required. This information will be used to develop a new way of working that joins up both dietetic and psychological approaches. We will then work in partnership with two hospitals in the North and South of England, to develop a plan to embed the new way of working into existing CD services, and to prepare for a rigorous evaluation of this approach.

To support adults with CD to manage their GFD, wellbeing and quality of life, this work explores new ways of delivering routine care, by joining up dietetic and psychological approaches.