Defining Success in the Delivery of Fertility-Related Care for Patients with Differences of Sex Development.

IF 2.6 3区 医学 Q3 ENDOCRINOLOGY & METABOLISM
Tara Streich-Tilles, Aimee Morrison, Tara Schafer-Kalkhoff, Melissa Gardner, Kristina I Suorsa-Johnson, Alison Baskin, Erica M Weidler, Kathleen van Leeuwen, David E Sandberg, Meilan M Rutter
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Abstract

Introduction: Individuals with differences of sex development (DSD) experience complex, often competing, medical and psychosocial challenges surrounding fertility. The study aimed to characterize how "success" in fertility-related care is conceptualized and attained among individuals with a DSD, their parents or caregivers, healthcare providers, and other stakeholders.

Methods: As part of a larger study, DSD stakeholders (n = 110) participated in semi-structured interviews covering the clinical care of patients with DSD. Primary questions included "What is a successful outcome in DSD care?" and "How do you achieve it?" with fertility as either a spontaneous or suggested topic of discussion. Transcripts were analyzed utilizing a phenomenological approach. This analysis focuses on the extracted themes related to fertility.

Results: Fertility was discussed by 19/24 individuals with DSD, 12/19 parents or caregivers, 35/37 healthcare providers, and 19/30 other stakeholders. Components of successful fertility-related care included (1) specific discussions surrounding the relationship between DSD and fertility potential, options for fertility preservation, and options for non-biologic parenthood; (2) early and repeated introduction of these topics; and (3) consideration of age, developmental maturity, and cultural context on decisions around fertility. Challenges included the lack of fertility outcome data in this population and the irreversibility of gonadectomy. Trade-offs identified included anatomic typicality versus function, fertility preservation versus cancer risk reduction, and balancing the different priorities of stakeholders.

Discussion/conclusions: A wide range of DSD stakeholders highlighted the importance of addressing fertility concerns in achieving favorable outcomes for individuals with DSD. These stakeholder perspectives should inform fertility-related education, shared decision-making processes, and clinical care.

为性别发育差异患者提供生育相关护理的成功定义。
导言:性别发育差异(DSD)患者在生育方面面临着复杂的、往往是相互竞争的医疗和社会心理挑战。本研究旨在描述有性别发育差异的个体、其父母或照顾者、医疗服务提供者及其他利益相关者是如何将生育相关护理中的 "成功 "概念化并实现 "成功 "的:作为一项大型研究的一部分,DSD 相关人员(n = 110)参加了半结构式访谈,内容涉及 DSD 患者的临床护理。主要问题包括主要问题包括:"什么是 DSD 护理的成功结果?"和 "如何实现成功结果?",生育是自发或建议讨论的话题。我们采用现象学的方法对记录誊本进行了分析。本分析侧重于提取与生育有关的主题:19/24 名 DSD 患者、12/19 名父母或照顾者、35/37 名医疗服务提供者和 19/30 名其他利益相关者讨论了生育问题。成功的生育相关护理包括1)围绕 DSD 与生育潜能之间的关系、生育力保存的选择以及非亲生父母的选择进行具体讨论;2)尽早并反复介绍这些主题;以及 3)考虑年龄、发育成熟度和文化背景对生育决策的影响。面临的挑战包括缺乏该人群的生育结果数据以及性腺切除术的不可逆性。讨论/结论:广泛的 DSD 利益相关者强调了解决生育问题对实现 DSD 患者有利结果的重要性。这些利益相关者的观点应为生育相关教育、共同决策过程和临床护理提供参考。
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来源期刊
Hormone Research in Paediatrics
Hormone Research in Paediatrics ENDOCRINOLOGY & METABOLISM-PEDIATRICS
CiteScore
4.90
自引率
6.20%
发文量
88
审稿时长
4-8 weeks
期刊介绍: The mission of ''Hormone Research in Paediatrics'' is to improve the care of children with endocrine disorders by promoting basic and clinical knowledge. The journal facilitates the dissemination of information through original papers, mini reviews, clinical guidelines and papers on novel insights from clinical practice. Periodic editorials from outstanding paediatric endocrinologists address the main published novelties by critically reviewing the major strengths and weaknesses of the studies.
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