The prevalence of psychological distress caused by a mismatch between birth sex and gender identity, formally known as gender dysphoria, likely rose 50-fold nationwide between 2011 and 2021, suggests an analysis of primary care data in England and published online in Archives of Disease in Childhood.
This means the condition is still uncommon, with fewer than 1 in 200 17-18 year olds affected, but levels of concurrent anxiety, depression, and self harm are high. And access to timely care is a live issue for young people and their families, a second feedback study shows.
Most previously published studies of gender dysphoria have assessed only small numbers of those attending specialist services, with few studies based in primary care, which is the usual first point of contact for patients, point out the researchers.
To obtain a clearer picture of trends in the prevalence of gender dysphoria; prescribing rates for medical treatments; and concurrent anxiety, depression, and self-harm in primary care, the researchers drew on anonymised electronic health records between 2011 and 2021 for those general practices in England contributing to the Clinical Practice Research Datalink (CPRD) database.
During this period, 3782 children and young people up to the age of 18 had a diagnosis of gender dysphoria documented in their medical record.
The researchers compared the diagnosis and treatment of those with gender dysphoria with 18,740 people of the same age with autism spectrum conditions and 13,951 with an eating disorder as the conditions can share similar clinical needs and concerns.
Analysis of the data showed that between 2011 and 2021, incidence rates of recorded gender dysphoria rose from 0.14/10,000 to 4.4/10,000 person years in this age group, while the overall prevalence rose from 0.16/10,000 person years in 2011 to 8.3 in 2012.
Analysis of the data showed that between 2011 and 2021, incidence rates of recorded gender dysphoria rose from 0.14 per 10,000 to 4.4 per 10,000 person years in this age group, while the overall prevalence rose from 0.16 per 10,000 person years in 2011 to 8.3 per 10,000 in 2021.
If this pattern were repeated nationally, it would mean more than 10,000 people aged 18 and under had a diagnosis of gender dysphoria in 2021, equivalent to 1 in 1200 compared with under 200 in 2011, equivalent to 1 in 60,000.
And from 2015 onwards, the numbers of cases rose more rapidly in those recorded as female than those recorded as male by their family doctors, and were around twice as high by 2021.
While new cases of gender dysphoria increased with age, they were rarely recorded in those under the age of 11 and recorded prevalence was highest in 17–18 year olds, reaching 42 per 10,000 by 2021 (around 0.4% of this age group).
Of the total number of those with gender dysphoria, 176 (nearly 5%) were prescribed puberty blockers; 302 (8%) were prescribed masculinising/feminising hormones; and 1994 (53%) had concurrent anxiety, depression, or self-harm recorded.
And compared with their matched peers with autism or eating disorders, recorded rates of anxiety were similar while rates of depression and self harm were higher for those with gender dysphoria. Rates were particularly high for those with multiple conditions: gender dysphoria and an autism spectrum condition, for example.
And although depression was more common in females than in males, and increased in frequency with age in all three groups, depression was recorded significantly more frequently in those with gender dysphoria, particularly for those recorded as male, as was self harm.
"Levels of observed anxiety and depression have been increasing in children and young people in general over the last two decades for complex and contested reasons, challenging health, education and social services, and those experiencing gender dysphoria/incongruence are at particular risk," note the researchers.
And they conclude: "There is an urgent need to tackle vulnerability to mental health difficulties and improve mental health support for children and young people experiencing gender dysphoria/ incongruence.
"Primary care services require support and guidance to ensure effective coordination of care for children and young people with multiple complex needs."
In a second study based on the feedback of those seeking gender identity treatment and their parents, as well as former recipients, access to timely care was a live issue for all the interviewees.
The researchers interviewed 14 teens (12 to 18 year olds) referred to gender identity services, 12 of their parents, and 18 people aged 19 to 30 who had previously sought treatment, between March 2022 and December 2023.
The responses indicated that young people experiencing dysphoria tend to feel more confident about the path ahead than their parents.
They were eager to start treatment straight away, and often felt disappointed by the inevitable medical delays and frustrated by their parents, who although supportive, were more cautious about medical treatments.
"Accessing timely care, however, is a problem. Families talk about the difficulties of waiting, in which they have to manage without specialist support… Waiting created a sense of urgency for young people and a reluctance to explore their feelings at their initial meetings at [Gender Identity Services]. They want to get on with their lives.
"For many parents, however, engagement with specialist care is more likely to reflect caution and doubt," say the researchers.
Successful policy has to carefully balance the inevitable tensions arising between the need for a young person with dysphoria to live the life they want and the need for sufficient time to discuss and reflect, suggest the researchers.
But the responses showed that both the young people and their parents felt it was very important to have an open minded supportive environment in which to explore and understand their experiences and concerns before making any decisions. And they valued specialist clinical input very highly.
"Families highlight the need for a provision that is sensitive, reduces distress and supports young people to live well. [They] recognise the value of open and honest discussions as long as it is done respectfully, in a trusting encounter, in which rapport has been established," conclude the researchers.
"This enables young people to achieve clarity about what their dysphoria means and make informed decisions about their future."
But they add: "This does not mean denying access to medical interventions or talking young people out of what they may think of as an appropriate pathway. It is about providing a safe space in which young people can reflect on how they feel."
