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).


CONCLUSIONS
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.
Häuser
Winfried
W
Department of Internal Medicine I, Klinikum Saarbrücken, Germany. whaeuser@kinikum-saarbruecken.de
Gold
Joachim
J
Stein
Jürgen
J
Caspary
Wolfgang F
WF
Stallmach
Andreas
A
D000328:Adult; D017668:Age of Onset; D000368:Aged; D000369:Aged, 80 and over; D001007:Anxiety / Q000209:etiology; D001294:Attitude to Health; D002446:Celiac Disease / Q000150:complications / Q000178:diet therapy / Q000523:psychology / Q000534:rehabilitation*; D003863:Depression / Q000209:etiology; D004522:Educational Status; D005260:Female; D005858:Germany / Q000453:epidemiology; D006305:Health Status Indicators; D006306:Health Surveys; D006801:Humans; D043183:Irritable Bowel Syndrome / Q000209:etiology; D008297:Male; D008875:Middle Aged; D010342:Patient Acceptance of Health Care; D011569:Psychiatric Status Rating Scales; D011788:Quality of Life; D012923:Social Class