Multi-stakeholder opinion statement on the care of individuals born with differences of sex development: common ground and opportunities for improvement.

IF 2.6 3区医学 Q3 ENDOCRINOLOGY & METABOLISM

Hormone Research in Paediatrics Pub Date : 2024-02-02 DOI:10.1159/000536296

Martine Cools, Earl Y Cheng, Joanne Hall, Julie Alderson, Anne-Marie Amies Oelschlager, Adam H Balen, Yee-Ming Chan, Mitchell E Geffner, Claus H Gravholt, Tülay Güran, Piet Hoebeke, Peter Lee, Ellie Magritte, Dina Matos, Ken McElreavey, Heino F L Meyer-Bahlburg, Richard C Rink, Alexander Springer, Konrad M Szymanski, Eric Vilain, Jo Williams, Katja P Wolffenbuttel, David E Sandberg, Ramnath Subramaniam

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引用次数: 0

Abstract

Background: In the last 15 years, the care provided for individuals born with differences of sex development (DSD) has evolved, with a strong emphasis on interdisciplinary approaches. However, these developments have not convinced some stakeholders to embrace the current model of care. This care model has also paid insufficient attention to socio-cultural differences and global inequalities.

Summary: This article is an opinion statement, resulting from in-depth discussions and reflection among clinicians, patients, and family support organizations based in the US and Europe, where we seek areas of common ground and try to identify opportunities to further develop resources. The product of these conversations is summarized in 10 panels. The corresponding sections provide additional discussion on some of the panel items.

Key messages: Participants identified areas of agreement and gained a deeper understanding of the reasons behind disagreements on certain matters and identified the necessary steps to foster future consensus. We offer preliminary recommendations for guiding clinical management and resource allocation. By promoting a broader consensus, we aim to enhance the quality of care and well-being for individuals of all ages who have a DSD.

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多方利益相关者关于 "照顾先天性别的发育差异者：共同点和改进机会 "的意见陈述。

背景：在过去的 15 年中，为先天性发育差异（DSD）患者提供的护理服务不断发展，其中特别强调跨学科方法。然而，这些发展并没有说服一些利益相关者接受当前的护理模式。摘要：本文是一份意见陈述，是美国和欧洲的临床医生、患者和家庭支持组织深入讨论和反思的结果，我们在讨论中寻求共同点，并试图找出进一步开发资源的机会。这些对话的成果归纳为 10 个板块。相应章节对部分小组讨论项目进行了补充讨论：与会者确定了意见一致的领域，更深入地了解了在某些问题上存在分歧的原因，并确定了促进未来共识的必要步骤。我们提出了指导临床管理和资源分配的初步建议。通过促进达成更广泛的共识，我们旨在提高各年龄段 DSD 患者的护理质量和福祉。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Hormone Research in Paediatrics ENDOCRINOLOGY & METABOLISM-PEDIATRICS

CiteScore

4.90

自引率

6.20%

发文量

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.