title: Patient perceptions of the burden of coeliac disease and its treatment in the UK.
abstract: BACKGROUND
  Coeliac disease affects about 1% of the population, with the majority being undetected. As a consequence, there have been calls for the introduction of screening. Before screening is given serious consideration, it is important to assess how acceptable early diagnoses and treatment would be.
  
  
  OBJECTIVE
  To assess patients' views as to the diagnosis and treatment of disease.
  
  
  METHODS
  Coeliac disease patients who had taken a gluten-free diet for at least 12 months (mean 60 months) were mailed a questionnaire. Coeliac patients presenting with typical classical symptoms were compared with those diagnosed without such symptoms.
  
  
  RESULTS
  Overall, 83% (147/177) of coeliac patients returned the questionnaires. Two-thirds (68%, 101/147) reported that their dietary restrictions reduced their enjoyment of food; 46% (68/147) believed their food cost them more and estimated this to be an extra 10 pounds sterling (16 euros) per week. Of those reporting greater cost, 31 (21%) said this was a problem for them. Half (54%, 80/147) reported doing things they enjoyed less often because of their diet, with the most common activity sacrificed being dining out (n = 65). In spite of these findings, 81% (119/147) reported being pleased that they were diagnosed, with 66% (59/89) of cases with classical symptoms wishing they had been diagnosed earlier compared with 45% (23/51) of those without such symptoms (chi(2) = 6.0, P < .05). In contrast, 27% (14/51) of coeliacs diagnosed without classical symptoms regretted being diagnosed with their condition compared with 10% (9/89) of those with classical symptoms (chi(2) = 7.1, P < .01).
  
  
  CONCLUSIONS
  Even after several years of a gluten-free diet, many patients with coeliac disease regard it as a substantial burden, with a quarter of screen detected patients reporting regret at being diagnosed. Our findings question how acceptable screening for coeliac disease would be in people with minimal or no symptoms.
authors.affiliation: Epidemiology and Public Health, University of Nottingham, Nottingham, UK.
authors.forename: J K H
authors.initials: JK
authors.lastname: Whitaker
authors.forename: J
authors.initials: J
authors.lastname: West
authors.forename: G K T
authors.initials: GK
authors.lastname: Holmes
authors.forename: R F A
authors.initials: RF
authors.lastname: Logan
mesh_terms: D000328:Adult; D001294:Attitude to Health; D002446:Celiac Disease / Q000178:diet therapy* / Q000523:psychology; D055050:Diet, Gluten-Free / Q000191:economics / Q000523:psychology*; D005260:Female; D005983:Glutens / Q000008:administration & dosage*; D006801:Humans; D008297:Male; D008875:Middle Aged; D010349:Patient Compliance / Q000523:psychology*; D017060:Patient Satisfaction / Q000706:statistics & numerical data*; D011788:Quality of Life; D011795:Surveys and Questionnaires; D006113:United Kingdom
chemical_list: D005983:Glutens