Exploring the experiences of adult patients with turner syndrome at a multidisciplinary clinic

被引：0
作者：
Shin, Sooyoun [1 ]
Liang, Laurel [2 ]
Korenvain, Clara [3 ]
Mccarthy, Lisa M. [4 ,5 ,6 ,7 ]
Lega, Iliana C. [1 ,4 ]
机构：
[1] Univ Toronto, Dept Med, 6 Queens Pk Crescent West, Third Floor, Toronto, ON M5S 3H2, Canada
[2] Womens Coll Hosp, Clin Pharm Dept, 76 Grenville St, Toronto, ON M5S 1B2, Canada
[3] Womens Coll Hosp, Specialized Med, 76 Grenville St, Toronto, ON M5S 1B2, Canada
[4] Womens Coll Hosp, Womens Coll Res Inst, 76 Grenville St, Toronto, ON M5S 1B2, Canada
[5] Univ Toronto, Leslie Dan Fac Pharm, 144 Coll St, Toronto, ON M5S 3M2, Canada
[6] Univ Toronto, Dept Family & Community Med, 500 Univ Ave, Toronto, ON M5G 1V7, Canada
[7] Trillium Hlth Partners, Inst Better Hlth, 100 Queensway W, Mississauga, ON L5B 1B8, Canada
来源：
MATURITAS | 2025年 / 195卷
关键词：
Turner syndrome; Infertility; Multidisciplinary; Qualitative study; CARE; WOMEN; GIRLS;
D O I：
10.1016/j.maturitas.2025.108214
中图分类号：
R592 [老年病学]; C [社会科学总论];
学科分类号：
03 ; 0303 ; 100203 ;
摘要：
Objective: To explore the experiences of adults with Turner syndrome 1) attending a multidisciplinary Turner syndrome clinic regarding reproductive and general health; and 2) interacting with a multidisciplinary team for the management of their Turner syndrome. Study design: In this descriptive, qualitative study, 21 adults with Turner syndrome who attend a multidisciplinary Turner syndrome clinic participated in semi-structured interviews. An inductive approach was used to code data and determine themes. Results: Five themes were identified. 1) Differing feelings toward fertility status. Experiences with fertility differed widely, based on timing and communication of diagnosis, and feelings toward having children. 2) Adaptability and overcoming challenges. Participants sought ways to adapt to living with Turner syndrome. 3) Engagement in one's own care. Participants were engaged in their care and sought support in learning about their condition, especially around reproductive health. 4) Desire for comprehensive healthcare. Participants felt the multidisciplinary Turner syndrome clinic provided knowledgeable, convenient, and comprehensive care. 5) Barriers to accessing healthcare. Participants identified challenges both in accessing healthcare providers with expertise in Turner syndrome and in navigating the financial impact of Turner syndrome. Conclusion: Infertility had differing impacts on adults with Turner syndrome. Participants were satisfied with the multidisciplinary care model. Our findings highlight the importance of multidisciplinary care for optimizing the experience of adults with Turner syndrome.
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页数：7
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