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

• La revisione ha trovato 23 linee guida o documenti di indirizzo (4 internazionali, 3 regionali, 16 nazionali) pubblicati tra il 1998 e il 2022.
• La maggior parte otteneva buoni punteggi nello spiegare il proprio scopo, ma scarsi per l'accuratezza dell'elaborazione, la loro usabilità e la loro indipendenza.
• Solo sei documenti hanno ottenuto più del 30% per accuratezza dell'elaborazione; le linee guida WPATH del 2022 hanno ottenuto il 35% e quella dell'Endocrine Society del 2017 il 42%.
• Solo le linee guida della Svezia (2022) e della Finlandia (2020) hanno ottenuto più del 50% per accuratezza dell'elaborazione e sono state raccomandate all'uso da tutti e tre i valutatori.
• Dieci linee guida hanno coinvolto pazienti o loro rappresentanti, ma solo due hanno detto di aver interpellato direttamente bambini, adolescenti o genitori.
• Le indicazioni della WPATH e dell'Endocrine Society hanno costituito la base della maggior parte delle indicazioni nazionali e regionali, e i due gruppi sono collegati da una sponsorizzazione congiunta.
• Gli autori concludono che la maggior parte delle indicazioni manca di un approccio indipendente e basato sulle prove, e che i servizi dovrebbero tenerlo presente prima di farvi affidamento.

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.