WPATH 2024: Part Two

We’re honored to be reposting Cal Horton’s part 1 of his wonderful blog posts on attending WPATH 2024 in Lisbon. Please check out the original on their blog.

On the 3^rd full day of WPATH 2024, there was one session that I wanted to write up in slightly more detail, as it is very relevant to those working with or supporting trans children and young people. (My original WPATH 2024 blog is available here). The session was titled “New long-term research on adolescent gender-affirming medical care”, with 5 presenters, three from the US, and two from the Netherlands.

I wanted to share my notes on these presentations here. First a big caveat – my notes and interpretation may not be 100% correct, I have not confirmed this post with the presenters of these studies, and these studies have not yet been finalised, peer reviewed or published. Therefore, the data in this study may change before acceptance into the formal literature. At WPATH, within the trans room, there was a discussion on the challenges of knowledge that is of vital importance to trans communities and families of trans kids being paywalled behind expensive and hard to attend conferences. Recognising the very slow timelines of academic publishing, there was a discussion on a duty to share early preliminary results not only with the clinicians and researchers who are able to attend WPATH, but also with the very interested and directly affected trans and family of trans kids communities, currently trying to defend our healthcare from attack, for whom new research is most important. In the trans room at WPATH we talked about our responsibility and duty of care as trans researchers with half a foot in clinical spaces to share information with those who cannot access. As part of this commitment I’m writing this blog.  

First Dr Diane Chen (she/her) presented on trajectories for mental health in the four years following gender affirming hormone initiation. She highlighted the six existing studies that examine psycho-social outcomes in US-based trans youth receiving oestrogen or testosterone (Allen; Achille; Kuper; Tordoff; Chelliah; Chen). These studies have generally found that aspects of mental health improve following initiation of gender affirming hormones. These studies have limitations including that they only follow youth for average of one year after treatment initiation, that they only focus on (internalising) areas like anxiety or depression, and the one article (by the presenter Chen et al) that looked at individual trajectories found significant individual variation around the average change in outcomes. For that study the presenter showed graphs showing, on average, a steep improvement in appearance congruence, a shallow reduction in depression and anxiety, and a shallow improvement in positive-affect and life satisfaction over 2 years. The individual dots show significant variability, suggesting a focus on the average experience may hide difference trajectories between sub-groups. The new study being presented here aims to look at potential distinct trajectories between sub-groups.

The new study (by Chen et al, not yet published), looked at data for 217 youth, average age 16 (range 11-20), 60% trans-masc, 34% trans-femme, 4% non-binary, 80% socially transitioned at baseline, 7.6% received gender affirming care in early puberty (defined as puberty blockers at tanner 2 or 3 or HRT at tanner 3). The study looked at internalising data on (anxiety/depression), at externalising (aggression, risk taking), experiences of gender minority stress, and parental acceptance. Data were collected at baseline, year 1, year 2, year 3 and year 4 [They applied latent growth curve modelling / growth mixture modelling for statistical analysis]. They presented graphs distinguishing three sub-groups that follow distinct pathways across the 4 years. 25% of trans youth in their study were identified as a ‘consistently low’ group who had low levels of anxiety/depression/risk-taking behaviours at baseline who continued to have low levels of anxiety/depression/risk-taking behaviours. 56% were classified as having ‘declining’ levels of anxiety/depression and consistently low levels of risk-taking behaviours, with levels of anxiety and depression slightly above a clinical diagnosis at baseline, later declining to slightly below clinical thresholds. 18% were categorised as elevated, having persistently high levels of anxiety/depression/risk-taking behaviours at baseline and later in study.

From further data analysis they discovered:

95% of youth who accessed early affirmative care were in the categories of consistently low (53%) and ‘declining’ levels of mental health problems, with only 5% of these youth in the category of having persistently high levels of anxiety/depression/risk-taking behaviours.

[Talking about ‘low’ and ‘declining’ as positive descriptors in a study on mental health at times feels a little counter intuitive, given we think of high mental health, or improving mental health as a good thing, whereas here we want to see low and declining mental health problems).

The youth who had consistently good mental health, or improving mental health had the following characteristics in common:

Less loneliness

Less gender minority stress

Higher parental acceptance

Higher emotional support

The study highlights that provision of HRT is not a magic cure to the mental health challenges of trans youth who are isolated, unsupported and facing anti-trans hostility and gender minority stress inside and outside of their homes.

Among youth with high levels of anxiety/depression/risk-taking behaviours at baseline, those with higher levels of baseline parental support were more likely to see improvements in their mental health.

Protection from gender minority stress, reduced isolation, emotional and social support, and parental support are all protective factors for trans youth mental health.

18% of the sample continued to have high levels of anxiety/depression/risk-taking behaviours throughout the study and this portion of trans youth would benefit from more targeted mental health support as well as support to reduce gender minority stress and isolation.

Next Dr Laura Kuper (they/them) presented preliminary findings of 5 – 8 year outcomes of the trans youth longitudinal survey. The study began in 2014 including annual youth and parent report surveys. It looked at quality of life, anxiety, depression, body dissatisfaction. Recently added new measures of gender dysphoria, socio-political stress and decision regret scale.

Wider study now includes 738 youth. At baseline ages 6-18 (mean 15), 64% assigned female at birth, 34% assigned male at birth. A few youth are now in year 9 of the study, most are currently in years 2-7 of the study (new enrolments to the study are being added each year).

Presented data on 267 youth and 317 parents who completed survey on access to treatment. The study looked at those who had started and at some point stopped treatment with oestrogen or testosterone. [For this presentation exact numbers were not provided and the graphs were hard to read precisely so there is a likely margin of error in the percentages I’ve given below – you’ll need to wait for publication of the proper research for the accurate numbers]

10% of those who had ever started oestrogen had at some point stopped oestrogen. The reasons for stopping oestrogen were examined. 1 was because was satisfied with the changes and didn’t need further oestrogen; 2 experienced unwanted changes; 2 had a change in their experience or understanding of gender; 2 stopped due to difficulties accessing oestrogen; 1 for other reasons. Just under half who ever stopped taking oestrogen ended up re-starting taking oestrogen. Youth and parents were asked the question re starting taking oestrogen “It was the right decision”. Around 70% of youth strongly agreed, 5% agreed, 2% neither agreed nor disagreed, 2% strongly disagreed. 60% of parents strongly agreed, 20% agreed, 2% neither agreed nor disagreed, 2% strongly disagreed. Youth and parents were asked the question re starting taking oestrogen “I regret the choice that was made”, and “the choice did me/my child a lot of harm” with the same findings (vast majority strongly disagreed, with only around 2% strongly agreeing).

32% of those who had ever started testosterone had at some point stopped testosterone, significantly higher than the portion who ever stopped oestrogen. The reasons for stopping testosterone were examined. 16 were because were satisfied with the changes and didn’t need further testosterone; 8 experienced unwanted changes; 8 had a change in their experience or understanding of gender; 2 had legal barriers to access; 23 (the largest portion) stopped due to difficulties accessing testosterone; 19 for other reasons. Just under half who ever stopped taking testosterone ended up re-starting taking testosterone, with several going through multiple points of stopping and re-starting. Youth and parents were asked the question re starting taking testosterone “It was the right decision”. Around 154 of youth strongly agreed, 8 agreed, 2 neither agreed nor disagreed, 1 (hard to read graph) disagreed, 1 (hard to read graph) strongly disagreed. 145 parents strongly agreed, 32 agreed, 7 neither agreed nor disagreed, 2 disagreed, 3 or 4 (hard to read graph) strongly disagreed. Youth and parents were asked the question re starting taking testosterone “I regret the choice that was made”, and “the choice did me/my child a lot of harm” with the same findings (vast majority strongly disagreed, with only around 1% strongly agreeing).

Dr Kuper then moved on to present findings on a 5 year longitudinal study of trans youth receiving oestrogen or testosterone. The study currently includes data for 558 youth at baseline, 431 at year one follow up, 275 at year two follow up, 163 at year three, 115 at year 4, 59 at year 5. The declining numbers at later years of follow up is because new youth keep being recruited into the study (not linked to drop out). [They applied linear mixed effect modelling to the dataset for statistical analysis].

Graphs were presented showing a significant and steady decrease in body dissatisfaction over 5 years time for both those on oestrogen and those on testosterone (with the same pattern for both). A graph of depressive symptoms showed a steady decrease in depression scores over the 5 years. The slope and change in depression was similar for both those on oestrogen and those on testosterone, but with those on testosterone having slightly higher depression at baseline and at current measure than those on oestrogen. Both groups were over the point for mild depression and near the level for moderate depression at baseline, and fell to at or just over the point for mild depression at current measure. Graphs showed some improvements in anxiety over time. Quality of life scores improved steadily over time for both groups.

Overall conclusions were:

Strong satisfaction with decision to receive treatment from youth and parents

Large improvements in body dissatisfaction, seen as the primary goal of treatment

Modest improvements in mental health and quality of life, which were also impacted by gender minority stress. They noted that this sample is in Texas where there are very significant socio-political stressors and state persecution, which is likely impacting on mental health measures.

This research also underscores the unsuitability of having mental health improvements as a key justifier for gender affirmative healthcare – especially for those youth who (through social support) have low levels of mental health at the start of puberty. Those youth do not see improvements in mental health, they see their good levels of mental health retained through medical transition. Reviews like the Cass review critiqued affirmative healthcare for not showing puberty blockers not having a significant enough boost to mental health – this is clearly the wrong variable to be tracking.   

Next Dr Kristina Olson presented on trans youth satisfaction with care. She presented existing knowledge on youth satisfaction with care, including the high levels of continuity of care, with the assumption that trans youth would not continue to take active efforts to continue healthcare that they did not want to continue. Also low rates of detransition to live as cis amongst trans youth who commence gender affirming healthcare. We also know there are cases of detransition / dissatisfaction, whilst noting that these two concepts are different and distinct.

This new study aimed to assess levels of satisfaction and regret following puberty blockers and HRT, and to assess continuity of care. Looked at trans youth project, more than 300 socially transitioned binary trans youth recruited between ages of 3 and 12 in years 2013-2017. Mostly US trans youth with some Canadians. Youth followed up every 1-2 years. Study has now been ongoing for 7 – 11 years. Youth have answered questions on average 3.8 times, and parents have answered questions on average 5.8 times. This study presents data from 2023 questionnaires, given to all youth who are currently 12+ and to one parent.

On average the cohort had socially transitioned at 6-7 years old. On average they had started blockers 5 years before the survey, at 11 years old. On average they had begun HRT 3.5 years before the survey, at 13 years old. This cohort, supported in childhood, has had good levels of mental health throughout childhood and into adolescence, with slightly elevated anxiety, matching well-being of cisgender peers.

269 were aged 12+ and had started gender affirming medical care and were eligible for this survey. 220 or 82% completed the survey. For the 18% who did not fill in this specific survey, the research team do have continuity of care medical records. Where data is provided by a youth and their parent, the data tables only show the youth report. Where youth data is not available, the parent reported data is provided.

215 reported on their experience with puberty blockers (160 direct from youth and 55 from parental report). Satisfaction was rated from 1 not at all happy to 7 extremely happy. Satisfaction was rated 6.4 average for youth and 6.7 average from parents. Regret was rated from 1 no regret to 7 strong regret. Regret was 1.5 for youth and 1.3 for parents.

170 reported on their experience with oestrogen or testosteone (119 direct from youth and 51 from parental report). Satisfaction was rated 6.5 average for youth and 6.9 average from parents. Regret was 1.4 for youth and 1.0 for parents.

Very high levels of satisfaction and very low levels of regret

Also asked participants if they would have preferred to receive healthcare treatment at a different time, with options: ‘wish earlier’, ‘correct age’, ‘wish later’, ‘wish never’. 2% of youth wished never to have received puberty blockers, 2% wished to have never received hormones, 1 parent in the sample wished never to have received puberty blockers. 18% of youth (4% parents) wished they had received puberty blockers earlier and 74% youth (86% parents) felt they had received them at the right time (in a sample receiving puberty blockers at average age 11). 34% of youth (19% parents) wished they had received oestrogen or testosterone earlier and 53% youth (75% parents) felt they had received them at the right time (in a sample starting oestrogen or testosterone at average age 13 years old.

From the overall sample, 97% have continued to access gender affirming medical care to this day. 2% have stopped accessing gender affirming medical care.

Overall – very high levels of satisfaction, very low rates of regret,

Only 9 individuals out of 220 sample (4%) experienced regret. 8 (3.6%) experienced regret for blockers, 3 (1%) experienced regret for hormones. From these 9 2 individuals (1%) expressed regret for both blockers and hormones. 4 of the nine stopped all treatment, 1 in the process of stopping treatment, 4 have continued to take blockers or hormones. From the nine expressing regret, about half regret ever starting treatment, about half regret a specific side effect or complication or regret not skipping straight to hormones without time on just blocker.

A majority of youth continue to express high satisfaction with care many years later. This cohort seems to align closely with their cisgender peers on mental health, well-being, and on rates of change of gender identity. Important to note that the access to gender affirming medical care that has accompanied this cohort, is harder to access today for their younger peers, with increasing barriers to trans healthcare across and beyond the USA.

Next Dr Marijn Arnoldussen from the Netherlands. The presentation was titled “gender related and psychological outcomes in adulthood after early gender related medical transition in adolescence”. Studies from the Netherlands tend be of interest, because they were an early supporter of a limited form of gender affirming care, with puberty blockers prescribed to a 13 year old trans boy starting in 1988, and with decades of follow up studies. Studies from the Netherlands also come with some significant baggage, in a highly controlled and potentially pathologizing and psychologically invasive model of care, where folks were expected to conform to a very defined stereotype of trans-ness to receive care. The narrowness of the model of expected transness has relevance to some of their outcomes. Knowing the UK children’s GIDS model sought to replicate the Dutch model, and knowing very closely just how abusive, invasive and harmful the UK approach to trans children has been, makes me approach data from the Dutch clinic with a significant degree of concern, especially where clinicians report data without asking centring the views of their patients, or where clinical control, coercion and pathologisation is apparent.

 The study aim was to describe long term gender outcomes, treatment regret, reflections on gender related medical care, and psychological outcomes for trans adults who received gender affirming medical care, including puberty blockers, during adolescence. The study focused on trans adults who took puberty blockers during adolescence and who started gender affirming hormones over 9 years ago. 145 service users were eligible, of whom 72 participated. This is clearly a pretty high drop out rate. In the UK service, high drop out rates are sometimes an indication of service users not having confidence in clinical research.

From the 72 participants, 51 (71%) were transgender men, 20 (28%) were transgender women. 1 (1%) non-binary. The binary focus of the cohort is perhaps unsurprising if, as was certainly the case in UK children’s clinics, non-binary transitions were not supported or permitted. Interesting that this  cohort who started medical transition in adolescence a decade ago, has significantly more trans men than trans women – when this phenomenon is noted in current youth it is blamed on tiktok which clearly did not exist a decade ago. This cohort started puberty blockers at an average age of 14.85 (range 11.47-17.97) and hormones at an average of 16.67 (range 13.93-18.46) and are followed up at average age 29.1 (range 25-36.29 year old). The oldest in this cohort are 36 years old. Hardly new treatment.  

94.4% had not experienced any change in their gender identity over time from starting blockers at  average age 14 to now being on average 29 years old.

83% (60 people) had not experienced any regret or doubt about their gender affirming medical.

17% (12 people) had experienced some form of doubt or regret – however:

For 2 people (3%) this was occasional thoughts what their life would be like if they hadn’t had medical transition, doubts rather than regrets.

3 people (4%) regretted the chosen surgical technique in genital surgery

4 people (5.6%) regretted either genital surgery or surgery to remove reproductive organs. This figure in particular need to be considered against two important realities – one, stating a desire for ‘full’ transition was in many places considered a key eligibility criteria for any form of medical transition, closing down possibilities for a less binary transition pathway, and two in the Netherlands until very recently surgical transition was deemed necessary for eligibility to change your legal gender and to access various state protections or rights as a trans person. I would assume that where there is pressure to engage in surgical transition, incidents of regret is arguably more likely.

2 people (2.8%) regretted becoming infertile and being unable to preserve sex cells

1 person regretted the hormones and surgery they received.

From the 72 patients followed into average age 29, only one stated a regret of hormones.

The cohort were asked about their ability to make decisions in adolescence. A significant majority, 50 people (69.4%) felt they were capable to make decisions at an even younger age then they were permitted to do under the Dutch model (where they received blockers at average age 14 and hormones at average age 16). 17 people (23.6%) felt they were at the right age for their decisions. 5 people (6.9%) felt they were too young, with these people particularly mentioning the impact on their fertility.

Overall, 98.6% of people were satisfied with their social and medical transition overall. 15% had some doubts or regrets, with this particularly related to aspects of surgical transition. 1 person regretted hormones and surgery. 93% felt, on reflection, they were capable to take decisions on medical transition during adolescence.

Finally in this session there was a presentation from Dr van der Meulen from the Netherlands entitled “sexual dysfunction after early endocrine treatment: long-term study in transgender adults”.

This session had elements of exoticisation and pathologisation of trans people that I found uncomfortable. I’ll share some of the results here. A study on 70 trans adults, comparing those who medically transitioned in early puberty (tanner 2 or 3) with those who medically transitioned in later puberty (tanner 4+). They were average age 29 during this research. For the 50 trans masculine participants, 18% medically transitioned in early puberty, for the 20 trans feminine participants 40% transitioned in early puberty.  

Amongst the groups of adult participants (average age 29), they were asked about experiences of sexual disfunction. For trans men 18% reported a problem with low sexual desire (80% reported no problem with sexual desire), and low sexual desire was reported for 22% of those who transitioned in early puberty compared to 17% for those who transitioned in late puberty. 16% of trans men reported too much sexual desire (64% reported no problem with too much sexual desire) and too much sexual desire was reported for 11% of those who transitioned in early puberty compared to 17% for those who transitioned in late puberty. 4% of trans men reported low sexual arousal (96% reported no problem with sexual arousal) and low sexual arousal was reported for 11% of those who transitioned in early puberty compared to 2% for those who transitioned in late puberty.; 24% reported difficulty orgasm (74% reported no problem orgasm) and difficulty to orgasm was reported for 33% of those who transitioned in early puberty compared to 22% for those who transitioned in late puberty.

For trans women 20% reported a problem with low sexual desire (60% reported no problem with sexual desire), and low sexual desire was reported for 38% of those who transitioned in early puberty compared to 33% for those who transitioned in late puberty. 0% of trans women reported too much sexual desire (100% reported no problem with too much sexual desire). 20% of trans women reported a problem with low sexual arousal (65% reported no problem with sexual arousal) and low sexual arousal was reported for 0% of those who transitioned in early puberty compared to 33% for those who transitioned in late puberty.; 35% reported difficulty orgasm (65% reported no problem orgasm) and difficulty to orgasm was reported for 0% of those who transitioned in early puberty compared to 58% for those who transitioned in late puberty.

Overall sexual disfunction was relatively low amongst these trans adults who medically transitioned in adolescence. There was no significant difference in sexual disfunction between those who medically transition in early puberty compared to those who sexually transition in late puberty. [Research on this topic surely, SURELY needs to better centre the voices and priorities of trans adults, and the multiple factors beyond early or late medical transition that likely impact on experiences – and surely some comparison to cis people’s experiences of sexual disfunction would make such research somewhat less exoticising and othering…]

A few follow up questions were held. One questioner stressed the importance of timeliness of publication of all the above new data – especially in contexts where healthcare is under attack. Another questioner asked about the mental health of neurodivergent populations, asking if datasets could be considered to see where autistic youth fitted on the mental health trajectories, noting the greater mental health challenges and [Is there a term like gender minority stress that applies to the stresses of navigating a neurotypical world?] that are carried by autistic youth that will not be ameliorated by gender affirmative care. There was also some discussion on what outcome indicators are best to track to monitor the impacts of gender affirmative healthcare, with panelists commenting that a narrow focus on mental health is probably not the right indicator.

I didn’t share any of my own research this time at WPATH, but given the WPATH content was very significantly dominated by US and Dutch research, I’ll end by sharing my contributions to the literature on puberty blockers here:

“I Didn’t Want Him to Disappear” Parental Decision-Making on Access to Puberty Blockers for Trans Early Adolescents – available here.

Experiences of puberty and puberty blockers: Insights from trans children, trans adolescents, and their parents – available here.

*Image added by TPATH courtesy of https://lisbonguide.org/what-to-see-in-belem-lisbon-top-20/lisbon_tours_belem_tower-2/