Summary

As part of England's Cass Review, researchers at the University of York searched for every guideline or guidance document on caring for under-18s with gender dysphoria (distress about one's sex) and rated their quality using a standard checklist. They found 23 documents published between 1998 and 2022. Most scored poorly on how carefully they were developed, how usable they were, and independence from their makers. Few were built on careful reviews of the evidence, and it was often unclear how advice was reached. Guidelines from WPATH and the Endocrine Society influenced most others, so guidelines largely cited each other. Only Sweden's and Finland's evidence-based guidelines were recommended by all three raters. The review followed a plan registered in advance, but rating guidelines involves judgement, and critics dispute how the Cass reviews were framed.

Key findings

• Tổng quan tìm thấy 23 hướng dẫn hoặc tài liệu chỉ dẫn (4 quốc tế, 3 khu vực, 16 quốc gia) được công bố giữa 1998 và 2022.
• Hầu hết đạt điểm tốt về việc giải thích mục đích, nhưng kém về mức độ cẩn thận trong xây dựng, tính khả dụng và tính độc lập.
• Chỉ sáu tài liệu đạt trên 30% về xây dựng cẩn thận; hướng dẫn năm 2022 của WPATH đạt 35% và hướng dẫn năm 2017 của Hiệp hội Nội tiết đạt 42%.
• Chỉ hướng dẫn của Thụy Điển (2022) và Phần Lan (2020) đạt trên 50% về xây dựng cẩn thận và được cả ba người đánh giá khuyến nghị sử dụng.
• Mười hướng dẫn có sự tham gia của bệnh nhân hoặc đại diện của họ, nhưng chỉ hai hướng dẫn cho biết họ hỏi trực tiếp trẻ em, thiếu niên hoặc phụ huynh.
• Hướng dẫn của WPATH và Hiệp hội Nội tiết là cơ sở của hầu hết hướng dẫn quốc gia và khu vực, và hai nhóm này có liên hệ qua việc đồng tài trợ.
• Các tác giả kết luận rằng hầu hết hướng dẫn thiếu cách tiếp cận độc lập, dựa trên bằng chứng, và các dịch vụ nên ghi nhớ điều này trước khi dựa vào chúng.

Abstract

BACKGROUND: Increasing numbers of children and adolescents experiencing gender dysphoria/incongruence are being referred to specialist gender services. There are various guidelines outlining approaches to the clinical care of these children and adolescents. AIM: To examine the quality and development of published guidelines or clinical guidance containing recommendations for managing gender dysphoria/incongruence in children and/or adolescents (age 0-18). A separate paper reports the synthesis of guideline recommendations. METHODS: A systematic review and narrative synthesis. Databases (Medline, Embase, CINAHL, PsycINFO, Web of Science) were searched to April 2022 and web-based searches and contact with international experts continued to December 2022, with results assessed independently by two reviewers. The Appraisal of Guidelines for Research and Evaluation tool was used to examine guideline quality. RESULTS: Twenty-three guidelines/clinical guidance publications (1998-2022) were identified (4 international, 3 regional and 16 national). The quality and methods reporting in these varied considerably. Few guidelines systematically reviewed empirical evidence, and links between evidence and recommendations were often unclear. Although most consulted with relevant stakeholders, including 10 which involved service users or user representatives, it was often unclear how this influenced recommendations and only two reported including children/adolescents and/or parents. Guidelines also lacked clarity about implementation. Two international guidelines (World Professional Association for Transgender Health and Endocrine Society) formed the basis for most other guidance, influencing their development and recommendations. CONCLUSIONS: Most clinical guidance for managing children/adolescents experiencing gender dysphoria/incongruence lacks an independent and evidence-based approach and information about how recommendations were developed. This should be considered when using these to inform service development and clinical practice. PROSPERO REGISTRATION NUMBER: CRD42021289659.

Conclusion

Most clinical guidance for managing children and adolescents experiencing gender dysphoria/incongruence lacks an independent and evidence-based approach and information about how recommendations were developed. The WPATH and Endocrine Society international guidelines, which like other guidance lack developmental rigour and transparency, have dominated the field and are linked through co-sponsorship; healthcare services and professionals should take into account the poor quality and inter-related nature of published guidance when using it to inform service development and clinical practice.