Health-related quality of life in adult coeliac disease in Germany: results of a national survey.

OBJECTIVE: No national survey on the present clinical spectrum and health-related quality of life (HRQOL) in people with coeliac disease has been conducted in Germany until now.
METHODS: The German Coeliac Society DZG posted a set of questionnaires (self-developed socio-demographic and medical questionnaire, the Short Form Health Survey, the Hospital Anxiety and Depression Scale and the Giessen Symptom Check List) to 1000/18 355 of their members who were >/=18 years (every 18th member following consecutive postal codes of the membership directory).
RESULTS: Four hundred and forty-six usable questionnaires were returned (diagnosis proven by biopsy; 78% female, median age 45.5 years). The median interval between the first medical examination due to symptoms of coeliac disease and the final diagnosis was 1 year. Ninety-eight percent reported a reduction of initial symptoms, 85% an improvement of HRQOL with a median gain in weight of 8 kg after starting a gluten-free diet (median duration of 6 years). Sixty-seven percent adhered all the time to the dietary regimen and 26% adhered most of the time. The most frequent diseases associated with coeliac disease were osteoporosis (15%), oral aphtae (12%) and dermatitis herpetiformis (9%). Because of the presence of gastrointestinal symptoms 26% of the patients met the modified Rome I criteria for irritable bowel symptom. Compared to representative samples from the German population, coeliac disease patients had higher scores for anxiety , fatigue, dyspeptic and musculoskeletal pain, and a reduced HRQOL in 9/10 scales of the SF-36 (all P<0.001).
CONCLUSION: Despite being on a gluten-free diet German coeliac disease patients suffer from a high burden of general and extra-intestinal symptoms and a reduced HRQOL.