Häuser Winfried, Gold Joachim, Stein Jürgen, Caspary Wolfgang F, Stallmach Andreas
Department of Internal Medicine I, Klinikum Saarbrücken, Germany.
Eur J Gastroenterol Hepatol. 2006 Jul;18(7):747-54. doi: 10.1097/01.meg.0000221855.19201.e8.
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.
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).
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).
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.
迄今为止，德国尚未开展关于乳糜泻患者当前临床症状谱及健康相关生活质量（HRQOL）的全国性调查。
德国乳糜泻协会（DZG）向其18岁及以上的1000/18355名成员发放了一组问卷（自行编制的社会人口学和医学问卷、简短健康调查问卷、医院焦虑抑郁量表以及吉森症状检查表）（按照会员名录的连续邮政编码，每第18名成员）。
共收回446份可用问卷（活检确诊；78%为女性，中位年龄45.5岁）。因乳糜泻症状首次就医至最终确诊的中位间隔时间为1年。98%的患者报告初始症状减轻，85%的患者健康相关生活质量得到改善，开始无麸质饮食后体重中位数增加8千克（中位持续时间6年）。67%的患者始终坚持饮食方案，26%的患者大部分时间坚持。与乳糜泻相关的最常见疾病为骨质疏松症（15%）、口腔溃疡（12%）和疱疹样皮炎（9%）。由于存在胃肠道症状，26%的患者符合肠易激综合征的改良罗马I标准。与德国人群的代表性样本相比，乳糜泻患者在焦虑、疲劳、消化不良和肌肉骨骼疼痛方面得分更高，在SF-36的10个量表中有9个量表的健康相关生活质量降低（所有P<0.001）。
尽管采用了无麸质饮食，德国乳糜泻患者仍承受着较高的全身和肠外症状负担，且健康相关生活质量降低。
