定义为性别发育差异患者提供生育相关护理的成功。
Defining Success in the Delivery of Fertility-Related Care for Patients with Differences of Sex Development.
发表日期:2024 Aug 26
作者:
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
来源:
Hormone Research in Paediatrics
摘要:
具有性别发育差异(DSD)的个体在生育方面会经历复杂且经常相互竞争的医学和社会心理挑战。该研究旨在描述 DSD 患者、其父母或照顾者、医疗保健提供者和其他利益相关者如何概念化和实现生育相关护理的“成功”。作为一项更大规模研究的一部分,DSD 利益相关者 (n = 110)参加了有关 DSD 患者临床护理的半结构化访谈。主要问题包括:“DSD 护理的成功结果是什么?”以及“你如何实现它?”将生育能力作为自发的或建议的讨论主题。利用现象学方法对转录本进行分析。该分析重点关注提取的与生育力相关的主题。19/24 的 DSD 患者、12/19 的父母或看护者、35/37 的医疗保健提供者和 19/30 的其他利益相关者讨论了生育力。成功的生育相关护理的组成部分包括: 1) 围绕 DSD 和生育潜力之间的关系、保留生育能力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; 3) 在做出生育决策时考虑年龄、发育成熟度和文化背景。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。确定的权衡包括解剖典型性与功能、保留生育能力与降低癌症风险,以及平衡利益相关者的不同优先事项。广泛的 DSD 利益相关者强调了解决生育问题对于 DSD 患者取得有利结果的重要性。这些利益相关者的观点应该为与生育相关的教育、共同决策过程和临床护理提供信息。 Karger AG,巴塞尔。
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.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.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 include 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.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.S. Karger AG, Basel.