Medical care of young women with Turner syndrome in Germany

被引:0
|
作者
Doerr, Helmuth-Guenther [1 ]
Bettendorf, Markus [2 ]
Binder, Gerhard [3 ]
Braemswig, Juergen [4 ]
Hauffa, Berthold P. [5 ]
Holterhus, Paul-Martin [6 ]
Mohnike, Klaus [7 ]
Schmidt, Heinrich [8 ]
Stalla, Guenter K. [9 ]
Wabitsch, Martin [10 ]
Woelfle, Joachim [11 ]
机构
[1] Univ Klinikum Erlangen, Kinder & Jugendklin, Loschgestr 15, D-91054 Erlangen, Germany
[2] Univ Klinikum Heidelberg, Sekt Pad Endokrinol & Diabetol, Zentrum Kinder & Jugendmed, Heidelberg, Germany
[3] Univ Klinikum Tubingen, Padiatr Endokrinol, Tubingen, Germany
[4] Univ Klinikum Munster, Padiatr Endokrinol, Munster, Germany
[5] Univ Klinikum Essen, Padiatr Endokrinol & Diabetol, Kinderklin 2, Essen, Germany
[6] Univ Klinikum Schleswig Holstein, Bereich Padiatr Endokrinol & Diabetol, Klin Kinder & Jugendmed 1, Campus Kiel, Kiel, Germany
[7] Otto von Guericke Univ, Univ Kinderklin, Magdeburg, Germany
[8] LMU Munchen, Haunersche Kinderklin, Padiatr Endokrinol & Diabetol, Munich, Germany
[9] Medicover Neuroendokrinol, Munich, Germany
[10] Univ klin Kinder & Jugendmed, Sekt Padiatr Endokrinol & Diabetol, Ulm, Germany
[11] Univ Kinderklin, Padiatr Endokrinol & Diabetol, Bonn, Germany
[12] Bornstuck 1, Dornburg, Germany
关键词
Turner syndrome; paper questionnaire; adult care; framework of a multi-disciplinary team; TRANSITION; GIRLS; DETERMINANTS; MANAGEMENT; QUALITY; GROWTH; HEALTH;
D O I
10.1055/a-0923-4191
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Background 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. Methods 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. Results 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. Conclusions 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.
引用
收藏
页码:E18 / E23
页数:6
相关论文
共 50 条
  • [31] Choosing an oestrogen replacement therapy in young adult women with Turner syndrome
    Guttmann, H
    Weiner, Z
    Nikolski, E
    Ish-Shalom, S
    Itskovitz-Eldor, J
    Aviram, M
    Reisner, S
    Hochberg, Z
    CLINICAL ENDOCRINOLOGY, 2001, 54 (02) : 159 - 164
  • [32] Cardiovascular Care of Turner Syndrome Women in Germany: Where Do We Stand?-Results from an Online Patient Survey
    Bacova, Martina
    Li, Pengzhu
    Arnold, Leonie
    Dalla-Pozza, Robert
    Haas, Nikolaus Alexander
    Oberhoffer, Felix Sebastian
    HEALTHCARE, 2022, 10 (03)
  • [33] Readiness for transition to adult care in adolescents and young adults with Turner syndrome
    Sheanon, Nicole M.
    Beal, Sarah J.
    Kichler, Jessica C.
    Casnellie, Lori
    Backeljauw, Philippe
    Corathers, Sarah
    JOURNAL OF PEDIATRIC ENDOCRINOLOGY & METABOLISM, 2020, 33 (09): : 1165 - 1171
  • [34] WORSE OUTCOMES IN HOSPITALIZATIONS OF WOMEN WITH TURNER SYNDROME COMPARED TO WOMEN WITHOUT TURNER SYNDROME
    Singh, Isani
    Duca, Lindsey M.
    Kao, David
    Khanna, Amber
    JOURNAL OF THE AMERICAN COLLEGE OF CARDIOLOGY, 2017, 69 (11) : 603 - 603
  • [35] Fertility on women with Turner syndrome
    Chakhtoura, Zeina
    Touraine, Philippe
    PRESSE MEDICALE, 2013, 42 (11): : 1508 - 1512
  • [36] Adulthood in women with Turner syndrome
    Ostberg, JE
    Conway, GS
    HORMONE RESEARCH, 2003, 59 (05) : 211 - 221
  • [37] Evaluation of function and structure of arterial wall in girls and young women with Turner syndrome
    G. Radetti
    L. Mazzanti
    C. Di Somma
    M. Salerno
    E. Gottardi
    D. Capalbo
    F. Tamburrino
    A. Colao
    Journal of Endocrinological Investigation, 2015, 38 : 963 - 970
  • [38] Evaluation of function and structure of arterial wall in girls and young women with Turner syndrome
    Radetti, G.
    Mazzanti, L.
    Di Somma, C.
    Salerno, M.
    Gottardi, E.
    Capalbo, D.
    Tamburrino, F.
    Colao, A.
    JOURNAL OF ENDOCRINOLOGICAL INVESTIGATION, 2015, 38 (09) : 963 - 970
  • [39] Social and medical determinants of quality of life and life satisfaction in women with Turner syndrome
    Jez, Waclaw
    Tobiasz-Adamczyk, Beata
    Brzyski, Piotr
    Majkowicz, Mikolaj
    Pankiewicz, Piotr
    Irzyniec, Tomasz J.
    ADVANCES IN CLINICAL AND EXPERIMENTAL MEDICINE, 2018, 27 (02): : 229 - 236
  • [40] The Care of Adolescents and Young Adults with Turner Syndrome: A Pediatric and Adolescent Gynecology Perspective
    Dowlut-McElroy, Tazim
    Shankar, Roopa Kanakatti
    JOURNAL OF PEDIATRIC AND ADOLESCENT GYNECOLOGY, 2022, 35 (04) : 429 - 434