Coeliac disease is a chronic disease of the gut. The only treatment is a lifelong exclusion of gluten from daily diet.
Management can be tricky, with some individuals experiencing significant interference with everyday life.
Approximately 200,000 people in the UK have been diagnosed with coeliac disease and the incidence is increasing. High quality and appropriate long-term management of this condition is crucial, however currently no
good evidence exists to shape guidelines that can meaningfully improve the everyday lives of people with coeliac disease.
Despite this worrying lack of evidence, the National Institute for Health and Care Excellence and gastroenterology societies have published national guidelines about long term follow up of people with coeliac disease. These recommend offering a single strategy for all of yearly face-to-face check-ups with a health care professional.
However, only about half of people with coeliac disease attend these currently. Increasing attendance would mean a large amount of extra money would need to be spent by the NHS on a service for which there is minimal evidence that it would improve lives. Instead that resource could be used to provide a personalised suite of services that matches the individualsÂ’ needs and preferences, and maximises patients' health related quality of life.
We will extract a large group of people diagnosed with coeliac disease and determine what long-term follow-up care is being provided in the NHS today and how much it costs. We will explore any sociodemographic inequalities in care provision that exist.
Coeliac disease is a chronic disease of the gut. The only available treatment is a lifelong exclusion of gluten from daily diet. Management can be tricky, with some individuals experiencing significant interference with everyday life.
Approximately 200,000 people in the UK have been diagnosed with coeliac disease and the incidence is increasing. High quality and appropriate long-term management of this condition is crucial, however currently no good evidence exists to shape guidelines that can meaningfully improve the day-to-day lives of people with coeliac disease.
Despite this worrying lack of evidence, the National Institute for Health and Care Excellence (NICE) and
gastroenterology societies have published national guidelines about long term follow up of people with coeliac disease. These recommend offering a single strategy for all consisting of yearly face-to-face check-ups with a health care professional. However, only about half of people with coeliac disease attend these currently.
Increasing attendance would mean a large amount of extra money would need to be spent by the NHS on a service for which there is minimal evidence that it would improve lives. Instead those resources could be used to
provide a personalised suite of services that better matches the individualsÂ’ needs and preferences, and maximises patients' health related quality of life.
The overall aim of the project therefore is to underpin future economic models and clinical trials to ensure optimal long-term follow-up for people with coeliac disease in the NHS. Specifically, this study is to describe and quantify what care is currently provided in the NHS for people with coeliac disease and to quantify what it currently costs the NHS to provide follow-up services for people with coeliac disease.
We will use the Clinical Practice Research Datalink to identify a large group of people diagnosed with coeliac
disease and determine what long-term follow-up care is being provided in the NHS today and how much it costs. We will also quantify any socio-demographic inequalities in care provision that exist.
Health service utilisation and associated cost
Joe West - Chief Investigator - University of Nottingham
Lu Ban - Corresponding Applicant - University of Nottingham
Colin Crooks - Collaborator - University of Nottingham
Denise Kendrick - Collaborator - University of Nottingham
Manpreet Bains - Collaborator - University of Nottingham
Mara Violato - Collaborator - University of Oxford
HES Admitted Patient Care;HES Outpatient;Patient Level Index of Multiple Deprivation