Dörr Helmuth-Günther, Bettendorf Markus, Binder Gerhard, Brämswig Jürgen, Hauffa Berthold P, Holterhus Paul-Martin, Mohnike Klaus, Schmidt Heinrich, Stalla Günter K, Wabitsch Martin, Wölfle Joachim
Kinder- und Jugendklinik, Universitätsklinikum Erlangen.
Sektion Päd. Endokrinologie und Diabetologie, Zentrum Kinder- und Jugendmedizin, Universitätsklinikum Heidelberg.
Dtsch Med Wochenschr. 2020 Feb;145(4):e18-e23. doi: 10.1055/a-0923-4191. Epub 2019 Jul 24.
Many recommendations for medical care for women with Turner syndrome (TS) have been published in the past. There are no studies that analyse the care situation of the women in Germany until now.
The study was performed in 2015 based on a questionnaire that was completed by TS women (aged ≥ 18 years; median: 25 years). The questionnaire was devised by a French team and used with their permission. All women had received growth hormone treatment during childhood. The women were identified and addressed in writing through eleven cooperating centers and the support group. In all, 130 questionnaires were evaluated.
79 of the 130 women (61 %) stated that they had health problems. 38 % of the women were under medical care by only one physician and 42 % by two physicians. The gynecologist was mentioned most often (by 80.3 %), followed by the family physician (53.8 %). ENT was mentioned as a problem system by 35 %, but only 3 % of the women attended an ENT physician. The question as to whether at least one of the following examinations (measurements of blood pressure, blood sugar, blood fats, liver function and/or thyroid hormones, echocardiographic and/or audiogram examination) had been performed during a period of 4 years was answered as follows: blood pressure (85 %), blood sugar (47 %), blood fats (41 %), liver function (46 %), thyroid hormones (44 %), echocardiography (57 %) and audiogram (35 %). A comprehensive examination was performed in 9.8 % of the women. 103 women (80.5 %) received sexual hormone replacement therapy. 76 women were on further drugs; thyroid hormones (44 %) and antihypertensive drugs (11 %) were stated most often.
This is the first study which analyses the current situation of medical care of TS women in Germany. Our data show that medical care of young adult TS women is not optimal. The study cannot clarify the reasons. Due to the numerous and different comorbidities, the medical care of TS women is complex and should therefore be provided multidisciplinarily by different specialists under the direction of one physician.
过去已经发表了许多关于特纳综合征（TS）女性医疗护理的建议。到目前为止，尚无研究分析德国TS女性的护理情况。
该研究于2015年进行，基于一份由TS女性（年龄≥18岁；中位数：25岁）填写的问卷。该问卷由一个法国团队设计并经其许可使用。所有女性在儿童时期都接受过生长激素治疗。通过11个合作中心和支持小组以书面形式识别并联系这些女性。总共评估了130份问卷。
130名女性中有79名（61%）表示有健康问题。38%的女性仅由一名医生进行医疗护理，42%的女性由两名医生进行医疗护理。提及最多的是妇科医生（80.3%），其次是家庭医生（53.8%）。35%的女性将耳鼻喉科列为有问题的系统，但只有3%的女性看过耳鼻喉科医生。关于在4年期间是否至少进行过以下检查之一（血压、血糖、血脂、肝功能和/或甲状腺激素测量、超声心动图和/或听力图检查）的问题，回答如下：血压（85%）、血糖（47%）、血脂（41%）、肝功能（46%）、甲状腺激素（44%）、超声心动图（57%）和听力图（35%）。9.8%的女性进行了全面检查。103名女性（80.5%）接受了性激素替代疗法。76名女性正在使用其他药物；提及最多的是甲状腺激素（44%）和抗高血压药物（11%）。
这是第一项分析德国TS女性当前医疗护理状况的研究。我们的数据表明，成年TS女性的医疗护理并不理想。该研究无法阐明原因。由于存在众多不同的合并症，TS女性的医疗护理很复杂，因此应由一名医生指导下的不同专科医生进行多学科护理。
