Impact of symptoms on quality of life before and after diagnosis of coeliac disease: results from a UK population survey

Postal 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.The 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).The 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.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]. Underdiagnosis is common [3] and some studies have reported frequent presentation with symptoms over many years prior to diagnosis [4], although rates of diagnosis are increasing in many countries [5]. Once diagnosed, adherence to treatment involving the lifelong elimination of wheat, rye and barley from the diet results in significant clinical improvement for most patients. 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 [6-8]. Here 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 diag