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

• De review vond 23 richtlijnen of adviesdocumenten (4 internationaal, 3 regionaal, 16 nationaal) gepubliceerd tussen 1998 en 2022.
• De meeste scoorden goed op het uitleggen van hun doel, maar slecht op hoe zorgvuldig ze waren ontwikkeld, hoe bruikbaar ze waren en hun onafhankelijkheid.
• Slechts zes documenten scoorden boven 30% voor zorgvuldige ontwikkeling; de richtlijnen van WPATH uit 2022 scoorden 35% en de richtlijn van de Endocrine Society uit 2017 42%.
• Alleen de richtlijnen van Zweden (2022) en Finland (2020) scoorden boven 50% voor zorgvuldige ontwikkeling en werden door alle drie de beoordelaars aanbevolen voor gebruik.
• Tien richtlijnen betrokken patiënten of hun vertegenwoordigers, maar slechts twee zeiden dat ze kinderen, tieners of ouders rechtstreeks hadden gevraagd.
• Richtlijnen van WPATH en de Endocrine Society vormden de basis van de meeste nationale en regionale richtlijnen, en de twee organisaties zijn verbonden door gezamenlijke sponsoring.
• De auteurs concluderen dat de meeste richtlijnen een onafhankelijke, op bewijs gebaseerde aanpak missen, en dat diensten hiermee rekening moeten houden voordat ze erop vertrouwen.

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.