Zink Angela, Huscher Doerte
Epidemiology Unit, German Rheumatism Research Centre, Berlin.
J Rheumatol Suppl. 2004 Mar;69:22-6.
We describe the aims and uses of a large rheumatological database, the national database of the German Collaborative Arthritis Centres. The database is a continuing registry of all patients with inflammatory rheumatic diseases seen at one of the member sites of the German Collaborative Arthritis Centres. The patients are recorded once a year with a clinical datasheet and a patient questionnaire. The database has been used for identification of deficits and trends in health care, description of current treatment practices, practice variations and individual burden of diseases, as well as for quality assessment. Large differences in disease modifying antirheumatic drug treatment between rheumatologists and nonspecialists as well as deficits in nonmedicinal therapies were identified. Considerable practice variation in German rheumatology with respect to drug and nondrug therapies was identified. The burden of disease (pain, disability, early retirement) was high in various patient subgroups. The database is useful for various aspects of health services research. It has, however, the important limitation that no specific followup procedure is applied. Therefore, longitudinal data exist only for patients in continuing rheumatological care.
我们描述了一个大型风湿病数据库——德国协作关节炎中心国家数据库的目标和用途。该数据库持续记录在德国协作关节炎中心成员机构之一就诊的所有炎性风湿性疾病患者。每年通过临床数据表和患者问卷对患者进行一次记录。该数据库已被用于识别医疗保健中的缺陷和趋势、描述当前的治疗方法、实践差异和个体疾病负担，以及进行质量评估。研究发现，风湿病学家和非专科医生在改善病情抗风湿药物治疗方面存在很大差异，非药物治疗也存在不足。研究还发现，德国风湿病学在药物和非药物治疗方面存在相当大的实践差异。在各个患者亚组中，疾病负担（疼痛、残疾、提前退休）都很高。该数据库对卫生服务研究的各个方面都很有用。然而，它有一个重要的局限性，即没有应用特定的随访程序。因此，只有持续接受风湿病治疗的患者才有纵向数据。
