98% van Nederlandse jongeren die blokkers namen had nog hormoonrecepten, maar de follow-up eindigde rond 20 jaar

Voortzetting van genderbevestigende hormonen bij transgenders die in de adolescentie met pubertijdsonderdrukking begonnen: een cohortonderzoek in Nederland

Cohort- & registerstudies Detransitie & spijt Cross-sekse hormonen

Authors: Maria Anna Theodora Catharina van der Loos, Sabine Elisabeth Hannema, Daniel Tatting Klink, Martin den Heijer, Chantal Maria Wiepjes
Journal: The Lancet Child & Adolescent Health
Year: 2022
Source: https://doi.org/10.1016/S2352-4642(22)00254-1

Summary

Researchers at the Amsterdam clinic that pioneered the Dutch approach of blocking puberty linked the records of 720 young people who started puberty blockers and then cross-sex hormones as teenagers to the national prescription register. At the end of 2018, 98% still had a hormone prescription, and no medical factor predicted stopping. The authors called this reassuring. The figure is widely cited as proof that regret is rare, but it counts prescriptions, not satisfaction or wellbeing. Half the group was about 19 or younger at follow-up, detransition often happens years later, the reasons the 16 people stopped are unknown, and people whose ovaries or testes have been removed need hormones regardless. It shows most people stayed on treatment into early adulthood, not that regret is low.

Key findings

De studie omvatte 720 mensen (69% als vrouw geboren) die vóór hun 18e met puberteitsblokkers begonnen en daarna cross-sex hormonen toevoegden bij de kliniek in Amsterdam.
Eind 2018 hadden 704 (98%) een recept voor cross-sex hormonen in het nationale register; 16 hadden er geen.
De typische leeftijd bij het starten met blokkers was 14 voor wie als man geboren was en 16 voor wie als vrouw geboren was; bij de follow-up was de typische leeftijd pas ongeveer 20 en 19.
Leeftijd, jaar van het eerste bezoek, stadium van de puberteit, leeftijd bij het starten met hormonen en verwijdering van eierstokken of testes voorspelden niet wie met hormonen stopte.
De studie telde een door de verzekering betaald recept, niet of de medicijnen daadwerkelijk werden ingenomen, noch welzijn, tevredenheid of spijt, en de redenen waarom de 16 stopten zijn onbekend.
Iedereen in de studie was al met cross-sex hormonen begonnen, dus tieners die na alleen blokkers stopten werden niet meegeteld.
Een studie van Amerikaanse militaire gezondheidsdossiers (Roberts et al., 2022) vond dat ongeveer 30% binnen vier jaar met hormonen stopte, wat laat zien dat resultaten sterk verschillen tussen plaatsen.

Abstract

BACKGROUND: In the Netherlands, treatment with puberty suppression is available to transgender adolescents younger than age 18 years. When gender dysphoria persists testosterone or oestradiol can be added as gender-affirming hormones in young people who go on to transition. We investigated the proportion of people who continued gender-affirming hormone treatment at follow-up after having started puberty suppression and gender-affirming hormone treatment in adolescence. METHODS: In this cohort study, we used data from the Amsterdam Cohort of Gender dysphoria (ACOG), which included people who visited the gender identity clinic of the Amsterdam UMC, location Vrije Universiteit Medisch Centrum, Netherlands, for gender dysphoria. People with disorders of sex development were not included in the ACOG. We included people who started medical treatment in adolescence with a gonadotropin-releasing hormone agonist (GnRHa) to suppress puberty before the age of 18 years and used GnRHa for a minimum duration of 3 months before addition of gender-affirming hormones. We linked this data to a nationwide prescription registry supplied by Statistics Netherlands (Centraal Bureau voor de Statistiek) to check for a prescription for gender-affirming hormones at follow-up. The main outcome of this study was a prescription for gender-affirming hormones at the end of data collection (Dec 31, 2018). Data were analysed using Cox regression to identify possible determinants associated with a higher risk of stopping gender-affirming hormone treatment. FINDINGS: 720 people were included, of whom 220 (31%) were assigned male at birth and 500 (69%) were assigned female at birth. At the start of GnRHa treatment, the median age was 14·1 (IQR 13·0-16·3) years for people assigned male at birth and 16·0 (14·1-16·9) years for people assigned female at birth. Median age at end of data collection was 20·2 (17·9-24·8) years for people assigned male at birth and 19·2 (17·8-22·0) years for those assigned female at birth. 704 (98%) people who had started gender-affirming medical treatment in adolescence continued to use gender-affirming hormones at follow-up. Age at first visit, year of first visit, age and puberty stage at start of GnRHa treatment, age at start of gender-affirming hormone treatment, year of start of gender-affirming hormone treatment, and gonadectomy were not associated with discontinuing gender-affirming hormones. INTERPRETATION: Most participants who started gender-affirming hormones in adolescence continued this treatment into adulthood. The continuation of treatment is reassuring considering the worries that people who started treatment in adolescence might discontinue gender-affirming treatment. FUNDING: None.

Conclusion

Most participants who started gender-affirming hormones in adolescence continued this treatment into adulthood. The authors consider the continuation of treatment reassuring given concerns that people who start treatment in adolescence might later discontinue it.

Methodological limitations

A prescription is only a stand-in: The study counted a hormone prescription paid for on one date. That doesn't confirm the drugs were taken and says nothing about wellbeing, satisfaction or regret. The authors told NPR they could not tell whether the 2% actually stopped.
Short follow-up: The typical person was about 19 or 20 when data collection ended, and recent patients were followed only briefly. Detransition is often reported several years after starting treatment, so later stopping is missed.
Some must keep taking hormones: People whose ovaries or testes have been removed need hormones for life for their bones and general health. So a continuing prescription in this group doesn't show they still support their transition.
Staying on treatment is not the same as benefit: The study measured whether treatment continued, not whether mental health or quality of life improved. Yet the authors call continuing 'reassuring' about worries over regret.
Reasons for stopping unknown: No information was collected on why the 16 people had no prescription, whether regret, health problems, moving abroad or trouble getting care.
Some hormone sources missed: People getting hormones abroad, privately or without insurance would look like they stopped. People who stopped but still filled prescriptions would look like they continued. So errors can go both ways.
Earlier dropouts left out: Only people who added hormones after at least three months of blockers were included. Those who stopped after blockers alone, the group most relevant to the claim that blockers are just a 'pause', are not counted.
Selected, older group: Patients came from one specialist clinic with strict Dutch entry rules, mostly before the recent rise in teenage girls and young people with complex mental-health needs seeking care. So the results may not apply today.
Different results elsewhere: A US military health-system study (Roberts et al., 2022) found about 30% of patients stopped hormones within four years, suggesting how many continue depends heavily on the setting.
Authors provide the treatment: The authors work at the clinic that developed and provides the treatment, and the study had no outside funding or independent checking of results.

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Summary

Key findings

Abstract

Conclusion