Abstract
BackgroundCoeliac disease is a common chronic autoimmune disorder. Underdiagnosis is common and the quality of life impact of symptoms may be severe. We report a study of symptom duration and quality of life before and after diagnosis in a representative sample of people with diagnosed coeliac disease in the UK.MethodsPostal questionnaire of 2000 people with diagnosed coeliac disease, requesting information on date of diagnosis, type and duration of symptoms, and quality of life before and after diagnosis using the EQ-5D instrument.ResultsThe survey response rate was 40% (788/2000). Mean duration of symptoms prior to diagnosis was 13.2 years, with some evidence of shorter duration in recent years. Respondents reported a mean of 13 consultations with their GP about their symptoms prior to diagnosis. The mean utility value of pre-diagnosis quality of life was 0.56, compared to 0.84 at time of survey, a highly statistically significant improvement of 0.27 (95% c.i. 0.25, 0.30).ConclusionsThe symptoms of undiagnosed coeliac disease are associated with a prolonged and substantial decrement to quality of life. These results strengthen the case for detailed examination of the cost-effectiveness of improved methods of detection and diagnosis, including population screening.
Highlights
Coeliac disease is a common chronic autoimmune disorder
A small number of studies have examined the quality of life of coeliac patients, but these have typically focussed on the quality of life of patients after diagnosis in relation to the general population, and in particular on the impact of a gluten free diet, and have relied on small samples and instruments that do not facilitate comparison [6,7,8]
* Correspondence: alastair.gray@dphpc.ox.ac.uk 1 Health Economics Research Centre, Department of Public Health, University of Oxford, Old Road Campus, Oxford, UK †Contributed Full list of author information is available at the end of the article we report on a survey of people with coeliac disease, in which information was collected on the duration and types of symptoms experienced prior to diagnosis, the number of consultations about these symptoms prior to diagnosis, and quality of life before and after diagnosis using for the first time in this population the EQ-5D instrument, a generic utility-based instrument that is widely used in surveys and favoured in technology assessment as it facilitates comparison across disease areas and the general population [9,10]
Summary
Coeliac disease is a common chronic autoimmune disorder. We report a study of symptom duration and quality of life before and after diagnosis in a representative sample of people with diagnosed coeliac disease in the UK. Coeliac disease is a common chronic autoimmune disorder with a prevalence amongst adults and children approaching 1% of the population in international studies [1,2]. A small number of studies have examined the quality of life of coeliac patients, but these have typically focussed on the quality of life of patients after diagnosis in relation to the general population, and in particular on the impact of a gluten free diet, and have relied on small samples and instruments that do not facilitate comparison [6,7,8].
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