‘Most clinical guidelines on gender care did not follow international standards’
Research by the University of York was commissioned to inform the Cass Review’s final report.
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Your support makes all the difference.The pillars of gender medicine are “built on shaky foundations” the chair of a review into NHS care for children has said, as evidence was found to be severely lacking on the impacts of puberty blockers and hormone treatments.
Dr Hilary Cass said healthcare for people questioning their gender “needs to be improved across the board” but added that there is a distinction between having a trans identity and medically transitioning.
Dr Cass, who chaired the Independent Review of Gender Identity Services for children and young people, said that “many people with gender diverse identities don’t want to go down a medical pathway” but will still be in need of support.
The findings of the series of systematic reviews and guideline appraisals are disappointing. They suggest that the majority of clinical guidelines have notfollowed the international standards for guideline development
Her comments came alongside a piece she wrote for the British Medical Journal (BMJ) in which she said that while medicine is usually based on the pillars of integrating the best available research evidence with clinical expertise and patient values and preferences, she had “found that in gender medicine those pillars are built on shaky foundations”.
Research by the University of York was commissioned to inform the review’s final report, including on social transitioning and current evidence around medical interventions.
A review of 50 studies into puberty blockers concluded that there is a “lack of high-quality research” assessing their use in adolescents experiencing gender dysphoria or incongruence and that “no conclusions can be drawn about the impact on gender dysphoria, mental and psychosocial health or cognitive development”.
It also notes: “Bone health and height may be compromised during treatment.”
Dr Cass said while the rationale for puberty blockers remains unclear, “the clearest indication” is they can help birth-registered males to “pass” – look less male – in adult life “by preventing the irreversible changes of male puberty”.
Her report added that it had heard that widespread claims puberty blockers reduce the risk of death by suicide “may place pressure on families to obtain private treatment” and that some GPs had been put under pressure “to continue prescribing such treatments on the basis that failing to do so will put young people at risk of suicide”.
But the University of York systematic review “found no evidence” they improve dysphoria, and “very limited evidence for positive mental health outcomes”.
Another review of 53 studies looking at hormone treatments – masculinising and feminising hormones testosterone and oestrogen – found a “lack of high-quality research” assessing their use in adolescents.
Some practitioners abandoned normal clinical approaches to holistic assessment, which has meant that this group of young people have been exceptionalised compared to other young people with similarly complex presentations. They deserve very much better
While it found there is moderate-quality evidence suggesting mental health may be improved during treatment, researchers said “robust study is still required”.
On the suggestion that hormone treatment reduces risk of death by suicide in children seeking gender care, the evidence found “did not support this conclusion”, the review said.
Most of the 23 guidelines – comprising international, regional and national – for managing children with gender dysphoria or incongruence “lacks an independent and evidence-based approach and information about how recommendations were developed”.
They warned that this “should be considered” when such guidelines are used to “inform service development and clinical practice”.
Writing in the BMJ, Dr Cass said: “The findings of the series of systematic reviews and guideline appraisals are disappointing.
“They suggest that the majority of clinical guidelines have not followed the international standards for guideline development.”
She said the World Professional Association of Transgender Healthcare (WPATH) had been “highly influential in directing international practice, although its guidelines were found by the University of York’s appraisal to lack developmental rigour and transparency”.
In the foreword to her report, Dr Cass said while doctors tend to be cautious in implementing new findings “quite the reverse happened in the field of gender care for children”.
She said a single Dutch study, “suggesting puberty blockers may improve psychological wellbeing for a narrowly defined group of children with gender incongruence”, had formed the basis for their use to “spread at pace to other countries”.
Subsequently, there was a “greater readiness to start masculinising/feminising hormones in mid-teens”.
She added: “Some practitioners abandoned normal clinical approaches to holistic assessment, which has meant that this group of young people have been exceptionalised compared to other young people with similarly complex presentations. They deserve very much better.”
Dr Cass said her recommendation for an expanded service “grounded in paediatric services and delivered in a consistent way” should be able to “evolve and adapt” as new research emerges.
She has recommended care must be “much more holistic” and consider a child “as a whole person and not just through the lens of their gender identity.
The overall review noted a higher proportion of birth-registered females presenting to gender services in adolescence, and Dr Cass said there is a lack of follow-up data on this group “who frequently have a range of co-occurring conditions including adverse childhood experiences, autism, and a range of mental health challenges”.
She said: “Filling this knowledge gap would be of great help to the young people wanting to make informed choices about their treatment.”