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

• Tinjauan ini menemukan 23 pedoman atau dokumen panduan (4 internasional, 3 regional, 16 nasional) yang diterbitkan antara 1998 dan 2022.
• Sebagian besar berskor baik dalam menjelaskan tujuannya, tetapi buruk dalam seberapa cermat disusun, seberapa dapat dipakai, dan independensinya.
• Hanya enam dokumen yang berskor di atas 30% untuk penyusunan yang cermat; pedoman WPATH 2022 berskor 35% dan pedoman Endocrine Society 2017 berskor 42%.
• Hanya pedoman Swedia (2022) dan Finlandia (2020) yang berskor di atas 50% untuk penyusunan yang cermat dan direkomendasikan untuk dipakai oleh ketiga penilai.
• Sepuluh pedoman melibatkan pasien atau perwakilan mereka, tetapi hanya dua yang mengatakan mereka menanyai anak, remaja, atau orang tua secara langsung.
• Panduan WPATH dan Endocrine Society menjadi dasar sebagian besar panduan nasional dan regional, dan kedua kelompok itu terhubung melalui sponsor bersama.
• Para penulis menyimpulkan bahwa sebagian besar panduan tidak memiliki pendekatan yang independen dan berbasis bukti, dan layanan harus mengingat hal ini sebelum mengandalkannya.

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.