Care for children and adolescents with gender dysphoria
Traduction française (texte original):
The National Board of Health and Welfare (NBHW) was commissioned by the Swedish government to update the "national guidelines on care of children and adolescents with gender dysphoria", first published in 2015 [1]. The chapters of the guidelines are being updated in stages, and this report contains revised guidance on psychosocial support and diagnostic assessment, as well as on puberty-suppressing treatment with GnRH analogues and gender-affirming hormone therapy. This report thus replaces the corresponding chapters of the 2015 publication. The remaining chapters and all updated guidelines will be published at a later date in 2022. In response to comments received during the external review, two new chapters have been added, entitled New recommendations on hormone treatment - their reasons and consequences and Non-binary gender identity - current knowledge and need for clarification. Another difference from the 2015 guidelines [1] is that the term "gender incongruence" is used alongside the term "gender dysphoria". For an explanation of terms and abbreviations, see Appendix 2. For a description of the scientific evidence and clinical experience underpinning the recommendations and working process, see Appendices 3 and 4.
The recommendations apply to children and adolescents, i.e. people under the age of 18. In the text sections relating to medicine, the term children refers to people who have not yet reached puberty, while the term adolescents refers to people who have started puberty. In the text sections relating to legal regulations, only the term "children" is used, referring to people under the age of 18. Finally, the term "young people" is sometimes used in text sections concerning children and adolescents.
Introductory comments
The following summary and introductory chapter describe that the updated recommendations for puberty suppression with GnRH analogues and gender-affirming hormone therapy have become more restrictive compared to 2015, and the reasons why they have changed. The new recommendations imply that a greater proportion than before of adolescents with gender incongruity referred for diagnostic evaluation of gender dysphoria will need to be offered care other than hormonal treatments. The question of how to ensure that all young people with gender dysphoria are taken seriously and confirmed in their gender identity, that they are welcomed and cared for appropriately, is increasingly relevant and will need to be answered during the ongoing restructuring of some gender dysphoria care into three national specialist medical care services (NBHW decision in December 2020). The care of children, adolescents and adults with gender dysphoria in these three specialized national units is intended to improve equality of care, coordination and dialogue, and may strengthen the implementation of national guidelines.
Recommendations and criteria for hormone treatment.
For adolescents with gender incongruence, NBHW believes that the risks of puberty-suppressing treatment with GnRH analogues and gender-affirming hormone therapy currently outweigh the possible benefits, and that these treatments should only be offered in exceptional cases. This judgment is based primarily on three factors: the persistent lack of reliable scientific evidence concerning the efficacy and safety of both treatments [2], new knowledge that detransition occurs in young adults [3], and the uncertainty that arises from the as yet unexplained increase in the number of care-seekers, a particularly large increase among adolescents registered as female at birth [4].
A systematic review published in 2022 by the Swedish Agency for Health Technology Assessment and Social Services Evaluation [2] shows that the state of knowledge remains largely unchanged from 2015. High-quality trials such as RCTs are still lacking, and evidence of treatment efficacy and safety is still insufficient and inconclusive for all reported outcomes. Furthermore, it is not possible to determine how common it is for adolescents undergoing gender-affirming treatment to subsequently change their perception of their gender identity or discontinue ongoing treatment. However, an important difference from 2015 is that the occurrence of detransition in young adults is now documented [3], meaning that the uncertain evidence pointing to a low prevalence of treatment interruptions or any aspect of regret is no longer undisputed. Although the prevalence of detransition is still unknown, the knowledge that it occurs and that sex-confirmation treatment can thus lead to deterioration in health and quality of life (i.e. harm) is important for overall judgment and recommendation.
In order to minimize the risk of a young person with gender incongruence later regretting gender-affirming treatment, NBHW believes that the criteria for offering GnRH-like hormones and gender-affirming hormones should be more closely related to those for hormone therapy and gender-affirming hormones should be closer to those used in the Dutch protocol, where emphasis on the duration of gender incongruence over time [5-7] is emphasized [5-7]. Accordingly, early onset (childhood) of gender incongruence, persistence of gender incongruence into puberty and marked psychological tension in response to pubertal development are among the recommended criteria. Publications describing these criteria and the results of treatment when administered accordingly [5, 6, 8] represent the best available knowledge and should be used as a guide.
In order to ensure the collection of new knowledge, NBHW further believes that treatment with GnRH analogues and sex hormones in young people should be provided in a research context, which does not necessarily involve the use of randomized controlled trials (RCTs). As in other areas of healthcare where it is difficult to conduct RCTs while maintaining sufficient internal validity, it is also important that alternative prospective study designs are considered for ethical review and that registry studies are made possible. Until such time as a research study is set up, NBHW believes that treatment with GnRH-analogues and sex hormones can be administered in exceptional cases,
in accordance with the updated recommendations and criteria described in the guidelines. Complex multidisciplinary assessments will eventually be carried out in the three national units that have received authorization to provide highly specialized care services.
In line with the DSM-5, the 2015 guideline recommendations applied to young people with gender dysphoria in general, i.e. also to young people with a non-binary gender identity. Another criterion in the Dutch protocol is that the child has had a binary gender identity ("cross-gender") since childhood [5, 6].
It became apparent during the revision process that clinical experience and documentation of hormonal and pubertal suppression treatments for young people with a non-binary gender identity are insufficient, and that they are also limited for adults. NBHW still considers that gender dysphoria rather than gender identity should determine access to care and treatment. Urgent work therefore remains to be done, to clarify the criteria by which adolescents with a non-binary gender identity can be offered puberty-suppressing, gender-affirming hormone treatment in a research setting.
Références
1. Socialstyrelsen. God vård av barn och ungdomar med könsdys- fori. Nationellt kunskapsstöd. https://www.socialstyrelsen.se/ globalassets/sharepoint-dokument/artikelkatalog/kunskaps- stod/2015-4-6.pdf ; 2015.
2. Statens beredning för medicinsk och social utvärdering. Horm- onbehandling vid könsdysfori - barn och unga. En systematisk översikt och utvärdering av medicinska aspekter : SBU ; 2022.
3. Littman L. Individuals Treated for Gender Dysphoria with Medical and/or Surgical Transition Who Subsequently Detran- sitioned : A Survey of 100 Detransitioners. Arch Sex Behav. 2021 ; 50(8):3353-69.
4. Socialstyrelsen. Utvecklingen av diagnosen könsdysfori - före- komst, samtidiga psykiatriska diagnoser och dödlighet i suicid. https://www.socialstyrelsen.se/globalassets/sharepoint-doku- ment/artikelkatalog/ovrigt/2020-2-6600.pdf. ; 2020.
5. Cohen-Kettenis PT, van Goozen SH. Réassignation sexuelle des adolescents transsexuels : une étude de suivi. J Am Acad Child Adolesc Psychiatry. 1997 ; 36(2):263-71.
6. Smith YL, van Goozen SH, Cohen-Kettenis PT. Adolescents with gender identity disorder who were accepted or rejected for sex reassignment surgery : a prospective follow-up study. J Am Acad Child Adolesc Psychiatry. 2001 ; 40(4):472-81.
7. Delemarre-van de Waal H, Cohen-Kettenis P. Prise en charge clinique du trouble de l'identité sexuelle chez les adolescents : un protocole sur les aspects psychologiques et endocrinologie pédiatrique. Journal européen d'endocrinologie. 2006 ; 155:S131-7.
8. Schagen SE, Cohen-Kettenis PT, Delemarre-van de Waal HA, Hannema SE. Efficacité et sécurité du traitement par agoniste de l'hormone de libération de la gonadotrophine pour supprimer la puberté chez les adolescents dysphoriques. J Sex Med. 2016 ; 13(7):1125-32.
Art. nr 2022-3-7799
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