Simoes Elisabeth, Kronenthaler Andrea, Emrich Christine, Rieger Monika A, Rall Kristin Katharina, Schäffeler Norbert, Hiltner Hanna, Ueding Esther, Brucker Sara Y
Centre of Women's Health, University Hospital Tuebingen, 72076 Tuebingen, Germany ; Women's Health Research Institute, 72076 Tuebingen, Germany ; Social Medicine Staff Unit, University Hospital Tuebingen, 72076 Tuebingen, Germany.
Institute of General Practice, University of Tuebingen, 72074 Tuebingen, Germany.
Biomed Res Int. 2014;2014:913842. doi: 10.1155/2014/913842. Epub 2014 Dec 3.
Deficits of care exist during the transitional period, when young people with ongoing needs of support to achieve their physical, social, and psychological potential are entering adulthood. This study aims to develop a patient oriented, structured provisional model to improve transitional care for adolescents with Mayer-Rokitansky-Kuester-Hauser-Syndrome as an example for orphan diseases, where problems of access and continuity are even more complex. The study is funded by the German Federal Ministry of Education and Research (BMBF-Funding Code 01GY1125). The target patient group are young females with this disorder, treated at the Centre for Rare Genital Malformations in Women (ZSGF), University Hospital of Tuebingen. The study comprises five phases: an appraisal of literature, assessment of patients (n = 25), parents', partners', and health and social care providers' (n = 24) needs and experienced deficits in care and support in a qualitative approach, construction of a provisional model via scenario technique, followed by communicative validation (including interested public, n = 100), preference finding, and identification of patient-oriented quality aims for follow-up. Quantitative data from questionnaires and chart review (as sociodemographic data, nonresponder analysis, and preference rating) are worked up for descriptive statistics. The results provide a platform for the development of future multidisciplinary transitional intervention programs in orphan diseases.
在转型期存在护理不足的情况，此时那些持续需要支持以实现其身体、社会和心理潜能的年轻人正步入成年期。本研究旨在以梅耶-罗基坦斯基-库斯特-豪泽综合征（Mayer-Rokitansky-Kuester-Hauser-Syndrome）这种罕见病为例，开发一种以患者为导向的结构化临时模型，以改善青少年的过渡性护理，在罕见病中，获得医疗服务和护理连续性的问题更为复杂。该研究由德国联邦教育与研究部资助（BMBF资助代码01GY1125）。目标患者群体是在图宾根大学医院女性罕见生殖器畸形中心（ZSGF）接受治疗的患有这种疾病的年轻女性。该研究包括五个阶段：文献评估、患者评估（n = 25）、采用定性方法评估父母、伴侣以及健康和社会护理提供者（n = 24）的需求以及他们在护理和支持方面所经历的不足、通过情景技术构建临时模型，随后进行沟通验证（包括感兴趣的公众，n = 100）、偏好发现以及确定以患者为导向的后续质量目标。对来自问卷和病历审查的定量数据（如社会人口统计学数据、无应答者分析和偏好评分）进行整理以进行描述性统计。研究结果为未来罕见病多学科过渡性干预项目的开发提供了一个平台。
