Current Evidence in the Treatment of Children with Gender Dysphoria 2022
Treatment by the NHS’s only gender clinic for children and young people, the Tavistock Gender Identity Service, or GIDS, has failed to reduce health inequalities for children who experience gender distress. These children have not been treated to the same standard of care as other children who seek clinical help with psychosocial conditions such as an eating disorder or depression.
In 2021 GIDS was rated “inadequate” by the Care Quality Commission, the regulator for health and social care in England. The inspectors documented concerns about clinical practice, safeguarding procedures, and assessments of capacity and consent to treatment. They also noted poor record keeping at the clinic.
An interim report into healthcare at GIDS by the independent inquiry led by Dr Hilary Cass found many failings at the service:
‘there does not appear to be a standardised approach to assessment or progression through the process, which leads to potential gaps in necessary evidence and a lack of clarity.’
‘There has not been routine and consistent data collection within GIDS, which means it is not possible to accurately track the outcomes and pathways that children and young people take through the service.’
Cass highlighted the lack of research and evidence to support the current treatment of adolescents:
‘Much of the existing literature about natural history and treatment outcomes for gender dysphoria in childhood is based on a case-mix of predominantly birth-registered males presenting in early childhood. There is much less data on the more recent case-mix of predominantly birth-registered females presenting in early teens, particularly in relation to treatment and outcomes.’
The report highlights concerns from therapists and clinicians about the unquestioning and non-exploratory ‘affirmative’ approach, often driven by child and parent expectations, and the extent of social transition, while evidence on the appropriate management of children and young people with gender distress is inconclusive both nationally and internationally.
‘Primary and secondary care staff have told us that they feel under pressure to adopt an unquestioning affirmative approach and that this is at odds with the standard process of clinical assessment and diagnosis that they have been trained to undertake in all other clinical encounters.’
The report recognises that we have the least information about the largest group – females developing gender distress in the early teen years – and that older studies do not relate to this group. Lack of data together with the different sociocultural climate of recent years and the complex needs of this group (which includes an overrepresentation of neurodiverse and looked after children) means that it is too early to assess long-term outcomes. The report acknowledges: “There is a limit as to how much certainty one can achieve in late teens” and “young people may not reach a settled gender expression until their mid-20s.”
The National Institute for Health and Care Excellence (NICE) published two evidence reviews in 2020 on treatments for children and adolescents with gender dysphoria.
The conclusion of the evidence review of Gonadotrophin releasing hormone analogues for children and adolescents with gender dysphoria was:
‘The results of the studies that reported impact on the critical outcomes of gender dysphoria and mental health (depression, anger and anxiety), and the important outcomes of body image and psychosocial impact (global and psychosocial functioning) in children and adolescents with gender dysphoria are of very low certainty using modified GRADE. They suggest little change with GnRH analogues from baseline to follow-up.’
The conclusion of the review of Gender-affirming hormones for children and adolescents with gender dysphoria was:
‘This evidence review found limited evidence for the effectiveness and safety of gender affirming hormones in children and adolescents with gender dysphoria, with all studies being uncontrolled, observational studies, and all outcomes of very low certainty. Any potential benefits of treatment must be weighed against the largely unknown long-term safety profile of these treatments.’
Both reviews specified the need for studies on short and long term safety and adverse effects of puberty blockers and cross-sex hormones, including the impact of blockers on bone density and cognitive development and reversibility of effects if the drug is withdrawn. For cross-sex hormones, studies are needed to assess whether such treatment causes acute side-effects, including clinically relevant derangement in renal and liver function tests, lipids, glucose, insulin and glycosylated haemoglobin, cognitive development and functioning.
Studies are also needed on the physical implications of detransitioning, e.g. “delay in the attainment of peak bone mass, attenuation of peak bone mass, permanent physical effects.”
‘De-transition: The proportion of patients who de-transition following the commencement of gender-affirming hormone treatment and the reasons why. This outcome is important to patients because there is uncertainty about the short and long term safety and adverse effects of gender-affirming hormones in children and adolescents with gender dysphoria.’
Lack of follow-up data, and lack of long-term follow-up data for the current cohort accessing hormone interventions at the GIDS means we cannot assess how many children will regret medical transition. There is a lack of research into detransitioners but two recent studies have provided some information.
Littman (2020) found that:
‘Some were harmed by transition and detransitioned because they concluded that their gender dysphoria was caused by trauma, a mental health condition, internalized homophobia, or misogyny—conditions that are not likely to be resolved with transition. These findings highlight the complexity of gender dysphoria and suggest that, in some cases, failure to explore co-morbidities and the context in which the gender dysphoria emerged can lead to misdiagnosis, missed diagnoses, and inappropriate gender transition.’
Vandenbussche (2021) found:
‘The results showed important psychological needs in relation to gender dysphoria, comorbid conditions, feelings of regret and internalized homophobic and sexist prejudices. It was also found that many detransitioners need medical support notably in relation to stopping/changing hormone therapy, surgery/treatment complications and reversal interventions.’
A study in 2021 from a UK adult gender clinic found a 6.9% detransition rate. As there was also (as is typical in these studies) a large loss to follow-up, the report concluded:
‘Detransitioning might be more frequent than previously reported.’
One detransitioner, Keira Bell, took her case to the High Court in 2020 to challenge the Tavistock GIDS on the lack of investigation and mental health support before she was prescribed puberty blockers. The court in their judgment supported Bell’s claim that children are unable to give fully-informed consent to such treatment. Although the Tavistock was successful in a later appeal against the judgment, the Appeal Court’s findings were on the basis that informed consent was not an issue to be decided by the courts.
In the same year the Tavistock published the results of their Early Intervention trial. Its findings confirmed one of the points made in the Keira Bell court judgment: that puberty blockers almost always lead to treatment with cross-sex hormones. In this study, of 44 participants 43 (98%) went on to take cross-sex hormones. The overall finding of the study was that GnRHa treatment brought no measurable benefit nor harm to psychological function in these young people with gender dysphoria.
In an analysis of the study Professor Michael Biggs points out that failure to disaggregate by sex means that the study can’t discern different patterns for boys and girls. In an earlier investigation, Professor Biggs found a disturbing outcome for children after a year on GnRHa:
‘a significant increase was found in the first item “I deliberately try to hurt or kill self’.
In this investigation it was also revealed that girls’ body image worsened following GnRHa, while boys’ body image improved.
The idea that puberty blockers are simply a ‘pause button’ that gives children time to think was put to rest in a report by the Health Research Authority into its role in granting ethical approval for the Early Intervention trial. The report’s finding was:
‘It would have reduced confusion if the purpose of the treatment had been described as being offered specifically to children demonstrating a strong and persistent gender identity dysphoria at an early stage in puberty, such that the suppression of puberty would allow subsequent cross-sex hormone treatmentwithout the need to surgically reverse or otherwise mask the unwanted physical effects of puberty in the birth gender. The present study was not designed to investigate the implications on persistence or desistence of offering puberty suppression to a wider range of patients, it was limited to a group that had already demonstrated persistence and were actively requesting puberty blockers.‘
In other words, the purpose of puberty blockers is to enable a child to ‘pass’ as the opposite sex, and they are now being used for a completely new cohort of adolescents who have developed late-onset gender dysphoria, a group for which there is insufficient research.
Even the Dutch researchers, who pioneered the use of puberty blockers for children with gender dysphoria, have expressed concerns that treatment for one distinct group (who experienced gender confusion early in life) is now being used for a completely new cohort (whose distress begins at adolescence) without proper understanding, and suggests that additional mental health support may be more appropriate. (deVries, 2020)
‘This raises the question whether the positive outcomes of early medical interventions also apply to adolescents who more recently present in overwhelming large numbers for transgender care, including those that come at an older age, possibly without a childhood history of GI. It also asks for caution because some case histories illustrate the complexities that may be associated with later-presenting transgender adolescents and describe that some eventually detransition.’
Dr Thomas Steensma, who helped develop and implement the “Dutch protocol” has made public statements about the lack of research in this area.
‘Little research has been done on the treatment with puberty inhibitors and hormones in young people. Therefore, it is also seen as experimental. We are one of the few countries in the world that continues to conduct research into this. In Great Britain, for example, only now, for the first time in all those years, a study has been published on a small group of transgender people. This makes it so difficult, almost all investigations come from ourselves.’
In the last few years we have also seen doubts about the safety and efficacy of puberty blockers expressed by health services in other countries, among them France, Australia, Sweden and Finland and guidelines and recommendations have been changed. The Florida Dept of Health fact-checked evidence and concluded:
‘Social gender transition should not be a treatment option for children or adolescents. Anyone under 18 should not be prescribed puberty blockers or hormone therapy. Gender reassignment surgery should not be a treatment option for children or adolescents.’
Leading US transgender clinicians from WPATH have also expressed concerns about prescribing puberty suppressing drugs to children and teens without proper investigation into individual circumstances and underlying issues.
One pioneer of medical transition in the US, Erica Anderson, has validated the questions posed by Lisa Littman’s study, around social contagion particularly affecting teenage girls:
‘She has helped hundreds of teens transition. But she has also come to believe that some children identifying as trans are falling under the influence of their peers and social media and that some clinicians are failing to subject minors to rigorous mental health evaluations before recommending hormones or surgeries.’
All emerging evidence suggests the need for caution in prescribing hormone interventions for children and for more rigorous assessment and diagnosis, in line with all other paediatric mental health services. The role of activists in promoting an unquestioning ‘gender affirmative’ approach and in adding ‘gender identity’ to the professional practice guide, the Memorandum of Understanding on Conversion Therapy has resulted in fear amongst counsellors and therapists in providing proper therapeutic investigation and exploration, and ultimately a failure of care for gender dysphoric children and adolescents.
The Cass Interim Report states:
‘From the point of entry to GIDS there appears to be predominantly an affirmative, non-exploratory approach, often driven by child and parent expectations and the extent of social transition that has developed due to the delay in service provision.’
The report recommends:
‘A fundamentally different service model is needed which is more in line with other paediatric provision, to provide timely and appropriate care for children and young people needing support around their gender identity.’