Improving the long-term management of coeliac disease

The National Institute for Health and Care Excellence (NICE) guidelines advise that patients with coeliac disease should be offered an annual review to support them with the gluten free diet and managing symptoms. We know from a survey of our members that up to 60% are not offered an annual review and would like some form of reassurance regarding their health. This funded research looked at developing a new method of patient follow-up. 

What was done? 

The researchers wanted to adapt cancer patient management software for people diagnosed with coeliac disease. Adults with a diagnosis of coeliac disease were prompted via email to answer an online questionnaire on three separate occasions during a 12 month period. The questions were based on guidelines from the British Society of Gastroenterology and NICE. Certain answers were flagged to clinicians for further inspection. If necessary, the clinician would then contact the patient. 

Unfortunately, the COVID-19 pandemic impacted the way this work was carried out and there were fewer participants than the study had originally hoped to recruit. Despite the challenges, the software was adapted to coeliac disease and findings suggest that the application could be used to safely and remotely support patients with coeliac disease by assessing their adherence to the gluten free diet and ongoing symptoms. 

What does this research mean for the coeliac / gluten free community? 

The findings show that a software application might be useful to monitor patients, to provide reassurance and ensure that they are referred for further clinical support when necessary. This would help to reduce waiting times for in person appointments and ensure that all patients are supported appropriately. 

What are the next stages for this research?  

This research needs to be replicated in other areas with more patients. There are many individual and organisational barriers to overcome for this application to be used nationally. Further work will need to focus on how to overcome these.  

How has the funding from Coeliac UK and Innovate UK made a difference to this research? 

The development and testing of the application for coeliac disease would not have been possible without the funding.   

Project Title: Using software to improve the long-term management of people affected by coeliac disease.   

The project ran from March 2019 - March 2022. 

Duration: 36 months 

Grant: £194,495 

This grant was jointly funded by Coeliac UK and Innovate UK. Innovate UK is an organisation within the UK government’s national research and funding agency that invests in science and research.