Ertl Diana-Alexandra, Gleiss Andreas, Schubert Katharina, Culen Caroline, Hauck Peer, Ott Johannes, Gessl Alois, Haeusler Gabriele
Department of PulmonologyAllergology and Endocrinology, University Clinic for Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria.
Center for Medical StatisticsInformatics, and Intelligent Systems, Medical University of Vienna, Vienna, Austria.
Endocr Connect. 2018 Apr;7(4):534-543. doi: 10.1530/EC-18-0053. Epub 2018 Mar 7.
Previous studies have shown that only a minority of patients with Turner syndrome (TS) have adequate medical care after transfer to adult care.
To assess the status of medical follow-up and quality of life (QoL) in adult women diagnosed with TS and followed up until transfer. To compare the subjective and objective view of the medical care quality and initiate improvements based on patients' experiences and current recommendations.
39 adult women with TS out of 64 patients contacted were seen for a clinical and laboratory check, cardiac ultrasound, standardized and structured questionnaires (SF-36v2 and Beck depression inventory).
7/39 of the patients were not being followed medically at all. Only 2/39 consulted all the specialists recommended. Comorbidities were newly diagnosed in 27/39 patients; of these, 11 related to the cardiovascular system. Patients in our cohort scored as high as the mean reference population for SF-36v2 in both mental and physical compartments. Obese participants had lower scores in the physical function section, whereas higher education was related to higher physical QoL scores. Adult height slightly correlated positively with physical health.
Medical follow-up was inadequate in our study cohort of adults with TS. Even though their medical follow-up was insufficient, these women felt adequately treated, leaving them vulnerable for premature illness. Initiatives in health autonomy and a structured transfer process as well as closer collaborations within specialities are urgently needed.
先前的研究表明，仅有少数特纳综合征（TS）患者在转至成人医疗护理后能获得充分的医疗照护。
评估确诊为TS并随访至转诊的成年女性的医疗随访状况及生活质量（QoL）。比较医疗护理质量的主观和客观观点，并根据患者的经历和当前建议进行改进。
在联系的64例患者中，39例成年TS女性接受了临床和实验室检查、心脏超声检查以及标准化结构化问卷（SF-36v2和贝克抑郁量表）调查。
39例患者中有7例根本没有接受医疗随访。只有2/39的患者咨询了所有推荐的专科医生。27/39的患者新诊断出合并症；其中11例与心血管系统有关。我们队列中的患者在SF-36v2的心理和身体方面得分与平均参考人群一样高。肥胖参与者在身体功能部分得分较低，而较高的教育程度与较高的身体生活质量得分相关。成人身高与身体健康呈微弱正相关。
在我们的成年TS患者研究队列中，医疗随访不足。尽管她们的医疗随访不充分，但这些女性感觉得到了充分治疗，这使她们易患过早疾病。迫切需要采取健康自主举措、建立结构化的转诊流程以及加强各专科之间的密切合作。
