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

• 검토는 1998년부터 2022년 사이에 발표된 지침 또는 안내 문서 23건(국제 4건, 지역 3건, 국가 16건)을 찾았습니다.
• 대부분은 목적을 설명하는 데는 높은 점수를 받았지만, 얼마나 신중하게 만들어졌는지, 얼마나 사용하기 쉬운지, 독립성에서는 낮은 점수를 받았습니다.
• 신중한 개발에서 30%를 넘은 문서는 여섯 건뿐이었습니다. WPATH의 2022년 지침은 35%, 내분비학회의 2017년 지침은 42%였습니다.
• 신중한 개발에서 50%를 넘고 세 평가자 모두가 사용을 권장한 것은 스웨덴(2022년)과 핀란드(2020년) 지침뿐이었습니다.
• 지침 10건은 환자나 그 대표를 참여시켰지만, 아동, 청소년, 부모에게 직접 물었다고 밝힌 것은 두 건뿐이었습니다.
• WPATH와 내분비학회의 안내가 대부분의 국가 및 지역 안내의 기초가 되었고, 두 단체는 공동 후원으로 연결되어 있습니다.
• 저자들은 대부분의 안내가 독립적이고 근거에 기반한 접근이 부족하며, 서비스는 이를 의존하기 전에 이 점을 염두에 두어야 한다고 결론짓습니다.

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.