Care of children andadolescents withgender dysphoria
Summary of national guidelines
December 2022

1Summary
The National Board of Health and Welfare has been commissionedby the Swedish government to update the national guidelines entitled Good care of children and adolescents with gender dysphoria, published in 2015 [1]. The parts of the guidelines have been
updated and published in stages. This is a summary of the final
report published in December 2022, which contains the updated
guidelines in its entirety, and thus replaces both previous interim
reports and the guidelines from 2015.

For decision-makers
For several years, care for people with gender dysphoria has beencharacterised by accessibility problems and inadequate knowledge about the results of treatments. The National Board of Healthand Welfare emphasises the importance of decision-makers in thehealth regions acting to promote improvement on both issues, andstresses that this needs to happen in the near future.
Young people suffering from gender dysphoria need to be promptly
assessed and offered appropriate treatment measures, based onhealth care needs assessments. Good psychosocial care is essential. The patient group is heterogeneous and psychosocial careneeds to clearly include young people with a non-binary gender
identity. Gender-affirming treatments need to be offered when theseare deemed indicated.
The 2015 guidelines stressed the importance of monitoring andevaluating the treatment interventions offered in the context ofclinical work. The quality registry (gender dysphoria registry) thatwas planned at the time has so far not been able to meet existingneeds. It is urgent that the health regions act to ensure that systematic documentation and monitoring of care at national levelare realised. Longitudinal data are required to provide a coherent
picture of this patient population, from referral to any diagnosis ofgender dysphoria and with follow-ups of patients that are offeredvarious treatment interventions.

2CARE OF CHILDREN AND ADOLESCENTS WITH GENDER DYSPHORIA
SOCIALSTYRELSENThe Swedish Agency for Health Technology Assessment and Assessment of Social Services (SBU) concludes that existing scientificevidence is insufficient for assessing the effects of puberty suppressing and gender-affirming hormone therapy on gender dysphoria,
psychosocial health and quality of life of adolescents with gender
dysphoria [2]. Knowledge gaps need to be addressed and theNational Board of Health and Welfare recommends that thesetreatments be provided in the context of research. Here too, thehealth regions have a responsibility to provide support so that relevant research can begin in the near future. Research questions thatneed to be answered for the healthcare area are listed in the SBU’s
database of knowledge gaps. Priority needs to be given to studies
that can answer the salient questions, as far as possible.

Caution in the use of hormonal and surgical treatment
At group level (i.e. for the group of adolescents with gender
dysphoria, as a whole), the National Board of Health and Welfare
currently assesses that the risks of puberty blockers and gender-affirming treatment are likely to outweigh the expected benefitsof these treatments. The National Board of Health and Welfare
therefore gives the following weak, negative recommendations as
guidance to the healthcare system:• Treatment with GnRH analogues, gender-affirming hormones,
and mastectomy can be administered in exceptional cases.
Care must be provided on the basis of scientific evidence and proven experience and according to the principle of doing good andnot harm. In revising its recommendations, the National Board of
Health and Welfare has taken account of the fact that the efficacy
and safety, benefits and risks of treatments are not proven [2] andthat three factors have shifted the balance between benefit and risk
in a negative direction:• The uncertainty resulting from the lack of clarity about the causes,that the number of people diagnosed with gender dysphoria hascontinued to rise since the publication of the guidelines in 2015,
particularly in the 13 to 17 age group and especially amongpeople whose registered sex at birth is female.
CARE OF CHILDREN AND ADOLESCENTS WITH GENDER DYSPHORIA
SOCIALSTYRELSEN

3• The documented prevalence among young adults of medical
detransition, which is the process by which a person discontinues
gender-affirming medical treatment for any reason or seeks to reverse the medical effects of completed gender-affirming treatment[3, 4]. According to the SBU, it is not possible to assess how
common it is for young people to later change their perception oftheir gender identity or to discontinue a gender-affirming treatment [2].
• The experience-based knowledge of participating experts is lessuniform than it was in 2015.

Decisions on treatment in an individualcase
To guide the decision on puberty-suppressing treatment for anadolescent in Tanner Stage 3 and for gender-affirming hormone
therapy, the National Board of Health and Welfare recommends
the criteria whose use has been documented and monitored within
the framework of the “Dutch protocol” [5-7]. The criteria include
the existence of the incongruence since childhood, the stabilityof gender identity over time, clear distress caused by the onset ofpuberty, and the absence of factors that complicate the diagnosticassessment. According to the participating experts, puberty-suppressing treatment can in some cases be considered to be of great
benefit even in Tanner stages 4 and 5, particularly for young
people with a registered sex of male at birth whose masculinisationin later puberty makes it very difficult to pass as an adult.
The documented experience with the Dutch protocol includes onlyadolescents with binary gender identity, and among participating
experts there is a lack of clinical experience with puberty-suppressing and gender-affirming hormone therapy for adolescents withnon-binary gender identity. The National Board of Health andWelfare notes that there is a lack of knowledge to guide decisions
on hormonal treatments for adolescents with non-binary gender
identity, but still believes that gender dysphoria rather than gender
identity should guide access to care and treatment. Urgent workthat remains when updating the guidelines for adults with gender
dysphoria [8] is to map the experience of assessment and gen4

CARE OF CHILDREN AND ADOLESCENTS WITH GENDER DYSPHORIA
SOCIALSTYRELSEN

der-affirming treatment for patients with non-binary gender identity
in adult health care.

Other recommendations
Other recommendations include that health services should:• Offer psychosocial support for unconditional exploration of gender identity during the diagnostic assessment. As in 2015, theNational Board of Health and Welfare emphasises exploration
as a prerequisite for good and safe care.
• Systematically search for signs of autism spectrum disorder (ASD)and ADHD/ADD before, or at an early stage of the assessment.
In case of signs of ASD, neuropsychiatric assessment should beinitiated.
The recommendations of the National Board of Health and Welfare remain as before, that the health care system should offer thefollowing measures to adolescents with gender dysphoria:• Sexology counselling and treatment• Fertility preservation• Voice and communication treatment• Hair removal
The expected benefit to patients of the measures are consideredhigh and the risks comparatively low. It is important that thesemeasures are also documented for follow-up when they are offered, in order to enable increased and comprehensive knowledge
regarding the patient group and care.

References
1. Socialstyrelsen. God vård av barn och ungdomar med könsdysfori. Nationellt kunskapsstöd. https://www.socialstyrelsen.se/
globalassets/sharepoint-dokument/artikelkatalog/kunskapsstod/2015-4-6.pdf; 2015.
2. Statens beredning för medicinsk och social utvärdering. Hormonbehandling vid könsdysfori - barn och unga. En systematisköversikt och utvärdering av medicinska aspekter: SBU; 2022.
CARE OF CHILDREN AND ADOLESCENTS WITH GENDER DYSPHORIASOCIALSTYRELSEN5﻿

3. Littman L. Individuals Treated for Gender Dysphoria with
Medical and/or Surgical Transition Who Subsequently Detransitioned: A Survey of 100 Detransitioners. Arch Sex Behav.
2021; 50(8):3353-69.
4. Vandenbussche E. Detransition-Related Needs and Support: A
Cross-Sectional Online Survey. J Homosex. 2021:1-19.
5. Smith YL, van Goozen SH, Cohen-Kettenis PT. Adolescents withgender identity disorder who were accepted or rejected for sex
reassignment surgery: a prospective follow-up study. J Am AcadChild Adolesc Psychiatry. 2001; 40(4):472-81.
6. Cohen-Kettenis PT, van Goozen SH. Sex reassignment ofadolescent transsexuals: a follow-up study. J Am Acad ChildAdolesc Psychiatry. 1997; 36(2):263-71.
7. Schagen SE, Cohen-Kettenis PT, Delemarre-van de Waal HA,
Hannema SE. Efficacy and Safety of Gonadotropin-Releasing
Hormone Agonist Treatment to Suppress Puberty in Gender
Dysphoric Adolescents. J Sex Med. 2016; 13(7):1125-32.
8. Socialstyrelsen. God vård av vuxna med könsdysfori : nationellt
kunskapsstöd. Stockholm: Socialstyrelsen; 2015.

Artikelnr 2023-1-8330