Genderidentiteitsstoornissen bij jongeren in Duitsland: prevalentie en trends, 2013–2022

Cohort- & registerstudies Desistentie in de kindertijd Stijgende diagnoses & sociale invloed

Authors: Christian J. Bachmann, Yulia Golub, Jakob Holstiege, Falk Hoffmann
Journal: Deutsches Ärzteblatt International
Year: 2024
Source: di.aerzteblatt.de/int/archive/article/239563

Summary

Using German public health insurance billing records on about 14 million people aged 5 to 24, researchers tracked diagnoses of 'gender identity disorder' from 2013 to 2022. Confirmed diagnoses rose about eight-fold, from about 1 in 4,400 to about 1 in 570, with the steepest rise in teenage girls. In 2022, 72.4% of people with the diagnosis also had another mental health diagnosis, most often depression and anxiety. Of those diagnosed in 2017, only 36.4% still had the diagnosis five years later. The authors say the data cannot explain the rise. It could reflect a real increase, more awareness, less stigma, better services or over-diagnosis. They say how few kept the diagnosis, and how common other mental health problems were, should shape advice on starting medical transition. As a short look at billing codes, it shows population trends but little about individual people's histories.

Key findings

Bevestigde diagnoses van ‘genderidentiteitsstoornis’ bij verzekerden van 5 tot 24 jaar stegen tussen 2013 en 2022 van 22.5 naar 175.7 per 100000 (ongeveer 1 op 4400 naar 1 op 570), een achtvoudige stijging; bij een striktere telling (gediagnosticeerd in minstens twee declaratieperiodes van drie maanden) steeg het van 15.2 naar 132.6 per 100000.
De cijfers waren bijna elk jaar het hoogst bij meisjes van 15 tot 19 jaar en bereikten in 2022 452.6 per 100000 (ongeveer 1 op 220); vóór de puberteit waren er meer jongens, vanaf de puberteit meer meisjes, en in de jongvolwassenheid werden de geslachten gelijk.
Een oudere, verwante diagnosecode daalde in dezelfde jaren van 216.7 naar 73.7 per 100000, wat de auteurs vooral toeschrijven aan artsen die van code wisselden; toch steeg het totaal van beide codes bij de striktere telling nog (51.9 naar 149.8 per 100000).
In 2022 had 72.4% van de 24624 mensen met de diagnose minstens één andere psychische diagnose: depressie bij 49.3% van de mannelijken en 57.5% van de vrouwelijken, angst bij 23.5% en 34.0%, en borderline persoonlijkheidsstoornis bij 12.1% en 17.6%.
Van de 7885 mensen die in 2017 de diagnose kregen, had in 2022 nog maar 36.4% de diagnose; dit lag in elke leeftijdsgroep onder de helft en was het laagst (27.3%) bij meisjes van 15 tot 19 jaar.
De auteurs zeggen dat declaratiegegevens de stijging niet kunnen verklaren en raden aan bij advies over het starten van medische transitie bij tieners rekening te houden met hoe vaak de diagnose niet blijft bestaan en hoe vaak andere psychische problemen aanwezig zijn.

Conclusion

Our data do not allow any conclusions to be drawn about possible causes (for example, actual prevalence increase, increased awareness, decreased stigmatization, improved health care services, overdiagnosis) for the increase in the prevalence of F64 diagnoses. ... The diagnostic persistence over the 5-year follow-up period of less than 50% in all age groups is in line with the literature and presumably reflects the fluidity of the concept of gender identity in childhood and adolescence; however, it could also be interpreted as an indication of the need for a comprehensive, standardized diagnostic procedure. ... There is a need for further research into what causes the low diagnostic persistence and the observed increase in prevalence. In the meantime, diagnostic stability and the high prevalence of concomitant mental disorders should be taken into account in the recommendations on the initiation of gender reassignment treatment in adolescence.

Methodological limitations

Billing records, not medical checks: Diagnoses are codes sent in for payment, not diagnoses made for research. The authors note they could not check whether the codes were medically accurate.
A dropped code is not the same as growing out of it: A missing code five years later could mean the person stopped seeing outpatient doctors, finished treatment, moved to care not in the data, or was coded under another label. The letter does not tell these apart.
Some care is missing: Data from psychiatric hospital outpatient clinics, and from hospital stays, were not included. The authors say this probably makes the numbers too low and may affect the figures on lasting diagnoses and other conditions.
Public insurance only: People with private insurance (about 1 in 10 Germans) are not included. This could skew the figures if they use care differently.
Doctors changed codes over time: The older related code fell as the newer one rose, which suggests a change in how doctors code. Under the looser count, the two codes combined hardly changed, so part of the rise reflects re-coding.
Nothing on individual care: The data say nothing about assessments, social or medical transition, treatment, gender identity or how severe symptoms were. So keeping or losing the diagnosis cannot be linked to treatment or to the person's situation.
Other conditions counted at one point: Other mental health diagnoses were counted in 2022 only. So it is unknown whether they came before or after the gender diagnosis, and the letter gives no comparison with young people without the diagnosis.
Sex records unclear: About 0.3% of insured people in 2022 had their sex recorded as unknown, undetermined or diverse. The data also cannot tell birth sex from a changed registered sex.
Very short report: As a two-page letter, it gives little detail on methods (for example, how the 2017 group or other diagnoses were defined). It also has no statistical modelling, no measure of uncertainty, and no adjustment for other factors.
Causes not studied: The authors say plainly that the data cannot tell a real increase apart from more awareness, less stigma, better services or over-diagnosis.

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Summary

Key findings

Conclusion