Culen Caroline, Herle Marion, Ertl Diana-Alexandra, Fröhlich-Reiterer Elke, Blümel Peter, Wagner Gudrun, Häusler Gabriele
Department of Pediatrics and Adolescent Medicine, Division of Paediatric Pulmology, Allergology and Endocrinology, Medical University of Vienna, Vienna, Austria.
Vienna Bone and Growth Center, Vienna, Austria.
Clin Endocrinol (Oxf). 2020 Oct;93(4):449-455. doi: 10.1111/cen.14293. Epub 2020 Aug 14.
Young women with Turner syndrome (TS) are known to be at risk for loss to medical follow-up. Recent literature indicates that there are disparities regarding transition readiness between different chronic conditions. So far, studies in young women with TS investigating their transition readiness compared to youths with other chronic conditions with no or minor neurocognitive challenges have not been reported.
Patients (n = 52), 26 patients with Turner syndrome (mean age 17.24 ± 2.10) and 26 controls with type 1 diabetes or a rheumatic disease (mean age 17.41 ± 2.44), were recruited from specialized paediatric endocrine outpatient clinics. The Transition Readiness Assessment Questionnaire TRAQ-GV-15 was used to compare transition readiness scores between TS and controls. In addition, information on individual handling of the questionnaire was obtained. Descriptive statistics and nonparametric methods were used to analyse the data.
Significant differences for transition readiness scores were found between the two study groups. The global TRAQ-GV-15 score was significantly lower for females with TS. In particular, subscale 1 'autonomy' of the TRAQ-GV-15 showed lower scores in patients with TS. Patients with TS needed significantly more help and more time to complete the questionnaire.
Special attention should be given to young women with Turner syndrome in the preparation for the transitional phase. By incorporating the assessment of transition readiness specialists will find it easier to identify underdeveloped skills and knowledge gaps in their patients. Unless a multidisciplinary young adult clinic is established, an older age than 18 years at transfer to adult endocrine care might be beneficial.
已知患有特纳综合征（TS）的年轻女性存在医疗随访失访风险。近期文献表明，不同慢性病在过渡准备方面存在差异。到目前为止，尚未有关于患有TS的年轻女性与无或有轻微神经认知挑战的其他慢性病青年相比其过渡准备情况的研究报道。
从专业儿科内分泌门诊招募了52名患者，其中26名特纳综合征患者（平均年龄17.24±2.10岁）和26名1型糖尿病或风湿性疾病对照者（平均年龄17.41±2.44岁）。使用过渡准备评估问卷TRAQ-GV-15来比较TS患者和对照者的过渡准备得分。此外，还获取了关于个体处理问卷的信息。采用描述性统计和非参数方法分析数据。
两个研究组之间在过渡准备得分上存在显著差异。TS女性的TRAQ-GV-15总体得分显著较低。特别是，TRAQ-GV-15的第1个分量表“自主性”在TS患者中得分较低。TS患者在完成问卷时需要显著更多的帮助和更多时间。
在为过渡阶段做准备时，应特别关注患有特纳综合征的年轻女性。通过纳入过渡准备评估，专家将更容易识别患者中发育不全的技能和知识差距。除非建立多学科的青年成人诊所，转至成人内分泌护理时年龄超过18岁可能是有益的。
