A research black hole? Australia’s gender clinics and their patient outcomes
Last year, there was yet another eruption in the culture wars.
It was the angry fallout of a research paper looking at so-called ‘desistence’ rates among paediatric patients who had presented with gender-related distress at The Children’s Hospital at Westmead, Sydney.
It included the observation in the abstract that that 22.1% had “desisted” treatment.
The critics waded in taking aim at its methodology, the way the statistics were presented and the conceptual mud which seemed to smother the researchers use of desistence as their main outcome measure.
As the dust settled, the important questions remained.
Yes, Westmead’s efforts were probably not the best research ever to end up in a journal but what about the other outcomes for Australia’s other nine publicly funded gender clinics?
Other countries are restricting the prescription of puberty blockers amid what they say is an evidential vacuum for their safety or efficacy.
Establishing outcomes could silence those who say the treatment is experimental and risky, and soothe the unease that many doctors who have little interaction with trans patients in their own work seem to feel.
More than anything else it could address that view that the rates of gender dysphoria itself are, in the words of one prominent Australian psychiatrist, a product of social contagion and group think.
Given estimates that some 45,000 children identify as trans in Australia, with hundreds of young people passing through the doors of these clinics, AusDoc set itself the apparently straightforward task of approaching them to find out what ongoing research was being done.
This took the form of an email with a Word document attached, sent on 20 February, explaining the reasons for our questions, making mention of the controversies around the Westmead study and asking if the clinics were attempting to track rates of regret (and the reasons for them) for the various cohorts at three specific stages of treatment — puberty blockers, cross-sex hormones and for those patients aged over 18, surgery.
“On the surface, the research — collecting information on a clearly defined cohort asking them about whether they regret treatments and the specific reasons for that regret — seems relatively straightforward,” we stated.
“The information would help reassure both doctors and the wider public that the various treatments offered are supporting a vulnerable cohort.”
That was our pitch anyway – you can read the full Word document here.
We set a deadline of Tuesday 5 March and sent the query to the state media units, as is standard practice because no state-employed doctor can speak without permission, as well as to the services themselves.
What followed is a tale of struggle and frustration.
There was reluctance to respond, and when a clinic did respond, usually after repeated prompting, it was in ways that felt vague, uninformative and unrelated to any of the questions we actually asked.
However, we start with the Royal Children’s Hospital Melbourne.
Its gender clinic is the largest in the country — with reportedly around 1000 patients on its list — and has the highest public profile.
This is important because the clinic stands as the model for gender-affirming care — having been largely responsible for putting together the 2017 guidelines widely embraced by clinicians across Australia.
Its former director Associate Professor Michelle Telfer will be a name many are familiar with, but her experiences may offer an explanation as to why some of the clinics would not provide details of the doctors leading them.
A paediatrician, she spent 10 years as the gender service director during which time she was the subject of unrelenting media scrutiny.
A few years ago she spoke at a Senate hearing saying that she had been demonised in a campaign against her — orchestrated by The Australian newspaper through numerous articles which portrayed her as harming children.
The intent was to destroy her reputation, she said.
After she complained about 45 articles published by the newspaper, articles which included headlines such as, ‘Young sex-swap cases rise 330pc’ and ‘Medicalisation of gender is dividing our society and abusing our defenceless children’, the Australian Press Council ruled in her favour saying her treatment had been unfair.
The Australian ended up issuing a begrudging apology.
Professor Telfer quietly stepped down from her role last year — although she remains a staff member within the service.
It is now headed up by paediatrician Dr Cate Rayner.
So what research is the country’s leading gender clinic doing?
It told us that in partnership with the Murdoch Children’s Research Institute, it has been running a prospective longitudinal study called Trans20, attempting to track the health outcomes of 620 trans and gender-diverse young people who were first seen at its gender clinic between February 2017 and February 2020.
An outline of the proposed study, which will run for 20 years, was featured in this BMJ article published in 2019.
The hospital in its response to us stressed the research is still in the early stages of data collection, but they plan to identify clinical outcomes following the different gender-affirming interventions — psychosocial and medical.
The outcomes will include gender identity, mental health, physical health, schooling, family functioning and quality of life, with participants asked to fill in questionnaires every 24 months.
AusDoc was also told that both the clinic and the Monash Health Gender Clinic (the over 16s service in Melbourne) — take the risk of possible regret of gender-affirming treatment seriously — it is part of their assessment and routine care to monitor for it.
They stress that feelings such as regret are rare and may not arise for years after treatment, if ever, but if they occur within a paediatric setting such data will be collected for the study.
“We are interested in understanding how trans and gender-diverse identities develop and evolve over time for children and adolescents who attend specialist gender services,” Associate Professor Ken Pang, a co-author of Trans20, says.
“For example, how often do such individuals come to re-identify with their birth-registered sex?”
These responses were enlightening.
Perth Children’s Hospital
When it came to the child and adolescent health gender diversity service at Perth Children’s Hospital it was a little different.
We sent our initial questions to the outpatients email address and were told our email had been forwarded to the service line manager.
We also copied in WA Health’s media unit, who told us they were handling our query and to refrain from contacting the service directly, an instruction which we followed.
However WA Health then did not respond by our deadline and later, when we contacted them again, said our questions had been passed on to another media team within Perth Children’s Hospital.
This explanation was given on Friday 8 March.
At the time of writing nearly three weeks later, we have still to hear back.
We have also yet to receive a response from the East Metropolitan Health Service gender service, which supports adult patients in WA.
However, on 29 February, a week after we had sent our initial requests, we did get a phone call from a person refusing to reveal their identity but who said they were aware that we were sending media queries.
They wanted to remain anonymous — but did we know about the looming publication of a paper in JAMA Pediatrics?
We did not.
It came to us a few days later under embargo.
It was a paper looking at some 550 young patients who had passed through the Perth Children’s Hospital clinic between 2014 and 2020 and tracking the numbers who had subsequently re-identified with their birth sex.
The study found that 29 patients (5.3% of 552 closed referrals to the service) had done so.
The majority had done so during the early stages of assessment, before any medical treatment.
Only two re-identified after receiving medical treatment — in one case puberty blockers, and in another cross-sex hormones (testosterone), which had been administered for a month.
But it had limitations so often seen in research on gender-affirming care — primarily that the authors were unable to speak to young people directly about why they later re-identified with their birth-registered sex, or if they did experience feelings of regret for the time they identified as trans.
The other serious limitation was simply that the study was looking at whether patients re-identified while they were attending the clinic.
Once the patients included in the study left — either voluntarily or because they had been referred to adult services — there was no information on what happened to them.
So researchers could not discover whether they had progressed with medical treatment, whether they re-identified with their birth gender, or whether they had any regrets.
We contacted lead author Dr Blake Cavve (PhD), now senior research officer at the Telethon Kids Institute, who carried out the study while employed as a researcher at the clinic.
He said one of the big limitations was that under the research protocols, they could not speak directly to young people and their families to get their personal reflections, specifically the question about whether it was the product of internal identity shift or external pressures.
“We did look for information on these issues in clinical notes, but because we did not find this documented for all patients, we limited our comments.”
He also told us that carrying out research on regret is not straightforward: “Sometimes when people are talking about regret … it is technically different to when people talk about stopping treatment — and there’s a bunch of reasons why people might.
“They might be happy with the changes that they’ve had, or there might be other medical side effects or effects they are not happy with. Or they might regret the decision. Or they might identify differently but not regret the changes that were made and see them as necessary or helpful.
“Unpacking all these different pieces of information takes a lot of work.”
He also made the key point that research of this kind needs money that is not easy to source.
“I was lucky to have a research position that’s funded, not a lot of clinics do necessarily.
“Who would fund this type of research is another piece of the puzzle. It is a long complex piece of work to do, and like all aspects of the healthcare system, everyone needs more money.”
Our next stop was Queensland.
Queensland Children’s Hospital
It has two services — one at Queensland Children’s Hospital and another adult service at the Royal Brisbane and Women’s Hospital.
Our initial emails were again sent on 20 February, and within two days we had a response from the gender service co-ordinator at the adult service, saying they would liaise with the internal communications team “prior to progressing any further”.
Two weeks went by and the deadline passed with no response.
We followed up asking if they were going to say anything.
Less than an hour later we got an email from the Metro North Health media unit.
It read:
“Hi Rachel. [Name redacted] provided this advice (apologies that I didn’t forward it to you at the time) :
‘I just want to advise that the service is opting not to provide a response to the journalist. Feedback from team members is that this magazine is not particularly reputable, and given the tight turnaround, it is not in our best interests to provide a response.'”
It was succinct at least.
We sent another email asking them to explain why they thought of us as not particularly reputable.
Apparently, no ill will was intended.
“Hi Rachel, apologies for my clumsy misinterpretation of the internal advice I received.
“As you can understand, the service gets many requests from a range of media, some who do not have the clients’ interests at heart.
“In this instance, it seems as they are not familiar with your publication they are anxious about engaging on the topic which affects a very vulnerable group of people.
“Please feel free to contact us with future enquiries, I’m sure we will be able to get stories over the line if we have a bit more information/time.”
We went back again, but the media unit responded simply repeating what it had already said using different words.
It is important to stress here that Queensland Children’s Hospital’s gender service is under independent review.
Launched in December 2023 by the state government, the review is examining the service’s current model of delivery against the Australian Standards of Care and Treatment Guidelines (those developed by The Royal Children’s Hospital Melbourne) for trans and gender-diverse children and adolescents.
It is also looking at the international evidence base to ensure that the service continues “to deliver the best health and wellbeing outcomes for the children and young people we serve”.
It comes amid internal ructions.
Last year, a psychiatrist at the hospital who was not part of its gender clinic — Dr Jillian Spencer — was reportedly stood down from clinical duties following a complaint from a transgender patient apparently accusing her of transphobia.
She has publicly voiced her concerns over the gender-affirming care model, with her crusade taken up by The Australian and internationally by those critical of the approach.
In a recent submission to an on-going national inquiry by the Australian Human Rights Commission into the discrimination faced by trans and gender diverse people, she wrote: “Some doctors providing the affirmation model lack the clinical skills to successfully engage a young person in therapy to help them explore and overcome their gender dysphoria.
“These unskilled health professionals instead collude with the young person to ignore the underlying issues driving the gender dysphoria and they sell their patient a pretend solution of body modification.”
The NHS bans puberty blockers
While we were making the follow-up calls with the various gender clinics and state media units, big news broke.
The NHS in England announced it would no longer routinely prescribe puberty blockers to children and young people, except in research trials.
The use of puberty blockers has a long history in transgender care, first being prescribed by clinicians at Dutch gender clinics more than a decade ago.
The aim is to allow the patients diagnosed with gender dysphoria time to consider treatments without the distress of having their bodies go through puberty.
Clinicians who support their use say the treatment is reversible and does not cause long-term harm.
But the NHS said there was not enough evidence for their safety and clinical effectiveness.
Behind the decision was a review carried out by the UK’s National Institute for Health and Care Excellence in 2020, which concluded after going through nine different studies, “there was no statistically significant difference in gender dysphoria, mental health, body image and psychosocial functioning in children and adolescents” prescribed the treatment.
In response to concerns that the move may risk harm to young people, NHS England said the new policy “would, in itself, be a risk-mitigation measure”.
The decision followed the independent review of gender services in England by Dr Hilary Cass, a paediatrician and former president of the Royal College of Paediatrics and Child Health, which also questioned the use of puberty blockers.
England is not the first country to reconsider its position and start to roll back the use of puberty blockers — there have been similar moves in Sweden and Finland.
The ripples of these decisions have spread wide.
But they have yet to affect the protocols followed in Australia’s clinics.
Version 1.3 of the Australian trans-care guidelines developed by the Royal Children’s Hospital in Melbourne state: “Puberty suppression typically relieves distress for trans adolescents by halting profession of physical changes such as breast growth in trans males and voice deepening in trans females and is reversable in its effects…
“[The] adolescent is given time to develop emotionally and cognitively prior to making decisions gender affirming hormone use which have some irreversible effects.”
The guidelines go through possible side effects and they stress the concerns over the lack of evidence on the longer term impact of bone mineral density due to the absence of effect of oestrogen or testosterone on bone mineralization during early puberty.
The Children’s Hospital at Westmead, Sydney
While the Melbourne paediatric clinic has championed the gender-affirming care model, its NSW counterpart — the gender services clinic at The Children’s Hospital at Westmead — seems to function in the public debate as its clinical nemesis given its concerns about the gender-affirming model.
Both clinics, at least to those on the outside, appear engaged in a bitter but undeclared conflict.
Two years ago, Westmead’s paediatric endocrinologist Professor Geoffrey Ambler and one of its psychiatrists, Dr Kasia Kozlowska, published a paper claiming doctors in the clinics felt pressured to prescribe puberty blockers and cross-sex hormones before non-medical interventions like psychotherapy had been explored.
They went on to claim a “conveyor belt” mentality to treating the condition had developed with children equating the gender affirmation model with medical intervention and believed their distress could be completely alleviated as a result.
As mentioned at the start, clinicians from Westmead published a second paper last year in a relatively obscure journal called Children, purporting to track the outcomes of paediatric patients aged 8-16 who had presented to its clinic.
It included a claim in the abstract that during 4-9 years’ follow-up, 22% had “desisted” treatment with desistence defined as the “resolution/disappearance of the gender-related distress that was the foundation for the young person to present to the service”.
Did the paper add much to what was known?
There were some major qualifiers — the outcomes related to 77 patients, and after excluding the 11 patients in the cohort who had never been given a formal diagnosis of gender dysphoria, the researchers reported a desistance rate of 9%.
In a lengthy editorial published late last year in the International Journal of Transgender Health, Sydney paediatrician Professor Rachel Skinner and part of the Sydney Children’s Hospitals Network, said that to the unwary, reading about a patient desisting gender-affirming treatment implied patients had stopped treatment because they no longer identified as trans.
And that could carry the implication that the diagnosis of gender dysphoria was wrong, that subsequent treatment was unnecessary and, in cases where the treatment effects were permanent, harmful.
Professor Skinner argued that the authors at Westmead had used desistence in two distinct ways.
“Their choice to use different definitions … allows them to simultaneously claim that desistance requires desisting from a medical pathway while also claiming people who never initiated that pathway count as desisters because their gender-related distress either disappeared or resolved.
“Crucially, neither definition of desistance used requires the youth to self-describe as cisgender at follow-up, as those who had seen a resolution/disappearance of gender-related distress, but also … those who had ‘desisted’ with treatment.”
Even with the group who had undergone medical treatment, there was no information on the reasons for desistence — yes, perhaps they had re-identified with their gender at birth, but there is a long list of other explanations ranging from physical or mental health concerns, concern over the complications and efficacy of medical treatment, concern about future discrimination or societal stigma, worries over cost, and pressure from family and friends.
The study did not go into these fundamental questions.
But whatever the flaws of the research, the fact that it had been published did indicate the clinic is at least doing some research on outcomes.
So we reached out (via the NSW Health media unit) to find out what work was going on.
Was the clinic looking at harder endpoints than desistence for instance — ie, rates for regret for the various interventions the clinic offered?
Was it attempting to look at what happened once patients left the clinic’s care?
We received a somewhat murky statement from NSW Health on 5 March, which responded on behalf of Westmead and Maple Leaf House, a rural and regional hub in Newcastle for young people up to 25.
NSW Health told us it is implementing a framework for its specialist trans and gender-diverse health service for people under 25, which covers the two clinics and a third site currently under development.
“Appropriate data collection to inform clinical care, service monitoring and management, and evaluation is a key aspect of the framework,” the statement said.
It lacked specifics on outcomes research.
We sent another email.
On 15 March we received this: “The Specialist Trans and Gender Diverse Health Service uses appropriate record-keeping systems and collects comprehensive medical information that is relevant to the safe care and management of their clients, in line with strict guidelines mandated by NSW Health.
“As referenced in the previous statement, appropriate data collection to inform clinical care, service monitoring and management, and evaluation is a key aspect of the framework.”
However, NSW Health said it has also set up a clinical advisory group to review emerging evidence and clinical guidance and provide advice to the services.
This seems to be what was promised in the aftermath of a Four Corners investigation into the Westmead clinic which alleged that the paper published in Children had been “weaponised” by the anti-transgender movement.
The program also alleged staff in the unit were in conflict, with some apparently alarmed by the embrace of “watchful waiting” treatment where counselling and psychotherapy are offered to see if symptoms resolve.
Supporters of the approach, it is important to add, say the model is safer, referring to the high levels of depression, anxiety, autism and behavioural disorders among the young people presenting to gender clinics.
Anyway, when it came to NSW it was another blank.
SA and Tasmania
There are two other states providing care through their public hospitals.
In SA, the Women’s and Children’s Hospital’s child and adolescent mental health service has been running a gender psychiatric clinic for over 20 years.
We were told that the service, which at present supports 240 patients, is not currently conducting any research and therefore no patient information is collated or published.
In Tasmania, the Department of Health did not respond to our repeated requests for comment about its gender service, which treats children and young people aged under 16.
We sent our original media query on 20 February, a follow-up on 6 March and subsequent phone calls on 13 and 18 March, which went unanswered.
We have still had no response.
Medicine and the open society
Why were these services so reluctant to engage?
Medicine needs openness and transparency — this need has an ethical dimension, it is the basis on which the public offers its trust in what it does, it is also the basis of trust within the medical profession itself.
An issue separate to this is the existence (or not) of the research itself.
If it is not happening routinely in Australia, that is no different to other countries.
On a global level, little is known about the direct experiences of patients themselves and the reasons for the various decisions they make.
We also know little about why treatment is not chosen — it may be because of cost, or because of family pressure, because of what happens to them following treatment.
For many who transition, the world is not a welcoming place.
On the question that obsesses everyone, there is also little in the way of robust, high-quality research on regret rates elsewhere, and again little exploration of the precise reasons for that regret.
The World Professional Association for Transgender Health, the global organisation for trans care, first published guidelines on treatment way back in 1979.
The current version now runs to 260 pages.
Those guidelines say that regret is uncommon and statistically lower than for other medical or surgical interventions, with rates possibly no higher than 1% and 1.5% for any form of regret.
But it says no large-scale studies have followed the journey of young people who received gender care over a long period of time to determine regret from treatment.
Dr Kinnon MacKinnon (PhD), an assistant professor of social work at York University in Toronto, Canada, is among the few researchers who are currently investigating detransitioning.
In a Reuters article called Why detransitioners are crucial to the science of transgender care he spoke about his work interviewing 40 people from Canada, the US and Europe who had detransitioned.
Many said their gender identity remained fluid well after the start of treatment, and a third of them expressed regret about their decision to transition from the gender they were assigned at birth.
Some also said they avoided telling their doctors about detransitioning out of embarrassment or shame.
Others said their doctors were ill-equipped to help them with the process.
Most often, they talked about how transitioning did not address their mental health problems.
“There’s a real need for more long-term studies that track patients for five years or longer,” Dr MacKinnon said.
“Many detransitioners talk about feeling good during the first few years of their transition. After that, they may experience regret.”
But in a more recent article published on The Conversation, Dr MacKinnon wrote of another issue — being ostracised by the transgender community.
“Discussion of anything but positive outcomes from gender-affirming hormonal or surgical treatments was long considered unspeakable in mainstream culture and in the trans community,” he said.
“As a result, regret went underground, to online social media networks and detransition peer support networks.”
He returned to the importance of research — it was not simply to cool some of the ill-informed fires that burn through the culture wars, fundamentally it was about better care of young people themselves.
“It is our view that [detransitioning] should be rigorously studied to build a more robust understanding of gender identity development, and to improve gender care — so that nobody’s needs or lived experiences are neglected.”
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