Thyen Ute, Ittermann Till, Flessa Steffen, Muehlan Holger, Birnbaum Wiebke, Rapp Marion, Marshall Louise, Szarras-Capnik Maria, Bouvattier Claire, Kreukels Baudewijntje P C, Nordenstroem Anna, Roehle Robert, Koehler Birgit
Klinik fur Kinder- und Jugendmedizin, Universitat zu Lubeck, Ratzeburger Allee 160, 23538, Lubeck, Germany.
Institute for Community Medicine - SHIP-KEF, Ernst-Moritz-Arndt University Greifswald, Walther-Rathenau-Str. 48, 17487, Greifswald, Germany.
BMC Health Serv Res. 2018 Jul 5;18(1):527. doi: 10.1186/s12913-018-3342-0.
To investigate the association between the structural quality of care and patient satisfaction with care in individuals with disorders/ differences of sex development (DSD).
A multicenter cross-sectional comparative study was conducted in 14 clinics in six European countries. We assessed the level of structural quality of care in each center using a self-constructed measure (Center Score) and the level of participant satisfaction with care using the customer satisfaction questionnaire (CSQ-4) and an adopted version of the Youth Health Care - Satisfaction, Utilization & Needs (YHC-SUN-SF). Data were obtained from individuals with Turner Syndrome (261), Klinefelter Syndrome (173), 46, XX congenital adrenal hyperplasia (190) and XY-DSD (257).
We found large variations between the scores for structural quality of care both within a diagnostic group and within a country; the overall association between participant satisfaction with the center score was significant.
Comparative effectiveness research across Europe can lead to more insight on beneficial structures and processes and the overall strategy to care for people with rare diseases in general and specific conditions such as disorders/ differences of sex development. Appreciation of higher levels of structural quality of the centers in this study supports the concept of comprehensive care.
German Clinical Trials Register: Registration identification number: DRKS00006072 , date of registration April 17th, 2014. DRKS00006072 (German Clinical Trials Register).
研究性发育障碍/差异（DSD）个体的医疗结构质量与患者护理满意度之间的关联。
在欧洲六个国家的14家诊所开展了一项多中心横断面比较研究。我们使用自行构建的指标（中心得分）评估每个中心的医疗结构质量水平，并使用客户满意度问卷（CSQ - 4）以及青少年医疗保健 - 满意度、利用率与需求（YHC - SUN - SF）的改编版本评估参与者的护理满意度水平。数据来自特纳综合征患者（261例）、克兰费尔特综合征患者（173例）、46，XX先天性肾上腺皮质增生患者（190例）和XY - DSD患者（257例）。
我们发现，无论是在诊断组内还是在一个国家内，医疗结构质量得分都存在很大差异；参与者满意度与中心得分之间的总体关联具有显著性。
欧洲范围内的比较效果研究能够使人们更深入地了解有益的结构和流程，以及针对罕见病患者（总体而言）和特定病症（如性发育障碍/差异）患者的整体护理策略。本研究中对各中心更高水平医疗结构质量的认可支持了综合护理的理念。
德国临床试验注册中心：注册识别号：DRKS00006072，注册日期：2014年4月17日。DRKS00006072（德国临床试验注册中心）
