Referrals to Gender Clinics in Sweden Drop After Media Coverage

Becky McCall and Lisa Nainggolan

February 03, 2022

Media coverage of transgender healthcare judged to be "negative" was associated with a drop of around 30% in referral rates to gender identity clinics in Sweden among young people under age 19, a new study indicates.

Malin Indremo, MS, from the Department of Neuroscience, Uppsala University, Sweden, and colleagues explored the effect of the documentaries, "The Trans Train and Teenage Girls," which they explain was a "Swedish public service television show" representing "investigative journalism." The two-part documentary series was aired in Sweden in April 2019 and October 2019, respectively, and is now available in English on YouTube.

In their article published online in JAMA Network Open, the authors say they consider "The Trans Train" programs to be "negative" media coverage because the "documentaries addressed the distinct increase among adolescents referred to gender identity clinics in recent years. Two young adults who regretted their transition and parents of transgender individuals who questioned the clinics' assessments of their children were interviewed, and concerns were raised about whether gender-confirming treatments are based on sufficient scientific evidence."

The programs, they suggest, may have influenced and jeopardized young transgender individuals' access to transgender-specific healthcare.

Stella O'Malley, a UK-based psychotherapist specializing in transgender care and executive director of Genspect, an international organization that provides support to the parents of young people who are questioning their gender, expressed her disappointment with the study's conclusions.

"I'm really surprised and disappointed that the researchers believe that negative coverage is the reason for a drop in referrals when it is more accurate to say that the information provided by 'The Trans Train' documentaries was concerning and suggests that further critical analysis and a review needs to be carried out on the clinics in question," she told Medscape Medical News.

O'Malley herself made a documentary for Channel 4 in the UK, broadcast in 2018, called: "Trans Kids: It's Time to Talk."

Rapidly Increasing Numbers of Youth, Especially Girls, Question Gender

As Indremo and coauthors explain — and as has been widely reported by Medscape Medical News — "the number of referrals to gender identity clinics have rapidly increased worldwide" in recent years, and this "has been especially prominent in adolescents and young adults."

In addition, they acknowledge, "there has been a shift in gender ratio, with a preponderance toward individuals who were assigned female at birth (AFAB)."

This was the topic of "The Trans Train" programs, and in fact, following their broadcast, Indremo and colleagues note that "an intense debate in national media [in Sweden] arose from the documentaries."

Their research aimed to explore the association between both "positive" and "negative" media coverage and the number of referrals to gender identity clinics for young people (under aged 19) respectively. Data from the six gender clinics in Sweden were included between January 2017 and December 2019.

In the period studied, the clinics received 1784 referrals, including 613 referrals in 2017, 663 referrals in 2018, and 508 referrals in 2019.

From the age-specific data that included 1674 referrals, 359 individuals (21.4%) were younger than 13 years and 1315 individuals (78.6%) were aged 13-18 years. From the assigned sex-specific data that included 1435 referrals, 1034 individuals (72.1%) were AFAB and 401 individuals (27.9%) were assigned male at birth (AMAB). Information on sex assigned at birth was lacking from one clinic, which was excluded from the analysis.

When they examined data for the 3 months following the airing of the first part of "The Trans Train" documentary series (in April 2019), they found that referrals to gender clinics fell by 25.4% overall (compared with the 3 months before part 1 was screened). Specifically, they fell by 25.3% for young people aged 13-18 years and by 32.2% for those born female.

In the extended analyses of 6 months following part 1, a decrease of total referrals by 30.7% was observed, while referrals for AFAB individuals decreased by 37.4% and referrals for individuals aged 13-18 years decreased by 27.7%. A decrease of referrals by 41.7% for children aged younger than 13 years was observed in the 6-month analysis, as well as a decrease of 8.2% among AMAB individuals.

"The Trans Train" documentaries, Indremo and colleagues say, "were criticized for being negatively biased and giving an oversimplified picture of transgender healthcare."

Did the Nature of The Trans Train Documentaries Influence Referrals?

In an invited commentary published in JAMA Network Open, Ken C. Pang, PhD, from the Murdoch Children's Research Institute, Melbourne, Australia, and colleagues note: "Although the mechanisms underlying this decrease [in referrals] were not formally explored in their study, the authors reasonably speculated that both parents and referring health professionals may have been less likely to support a child or adolescent's attendance at a specialist pediatric gender clinic following the documentaries."

Pang and colleagues go on to say it is "the...responsibility of media organizations in ensuring that stories depicting healthcare for transgender and gender diverse (TGD) young people are fair, balanced, nuanced, and accurate."

Often, media reports have "fallen short of these standards and lacked the voices of TGD young people who have benefitted from gender-affirming care or the perspectives of health professionals with expertise in providing such care," they add.

"For example, some [media reports] have suggested that the growing number of referrals to such clinics is not owing to greater awareness of gender diversity and empowerment of TGD young people but is instead being driven by other factors such as peer influence, while others have warned that the use of gender-affirming hormonal interventions in TGD young people represents an undue risk," they continue.

Indremo and colleagues didn't see any drop-in referrals after the second part of the series, aired in October 2019, but they say this was likely because referrals were "already lowered" by the airing of the first part of the documentaries.

Nor did they see an increase in referrals following what they say was a "positive" media event in the form of a story about a professional Swedish handball player who announced the decision to quit his career to seek care for gender dysphoria.

"One may assume that a single news event is not significant enough to influence referral counts," they suggest, noting also that Sweden represents "a society where there is already a relatively high level of awareness of gender identity issues."

"Our results point to a differential association of media attention depending on the tone of the media content," they observe.

Pang and coauthors note it would be "helpful to examine whether similar media coverage in other countries has been associated with similar decreases in referral numbers and whether particular types of media stories are more prone to having this association."

Parents and Doctors Debate Treatment of Gender Dysphoria

In Sweden, custodians' permission as well as custodians' help is needed for minors to access care for gender dysphoria, say Indremo and coauthors. "It is possible that the content of the documentaries contributed to a higher custodian barrier to having their children referred for assessment, believing it may not be in the best interest of their child. This would highly impact young transgender individuals' possibilities to access care." 

They also acknowledge that healthcare practitioners who refer young people to specialist clinics might also have been influenced by the documentaries, noting "some commentators argued that all treatments for gender dysphoria be stopped, and that 'all healthcare given at the gender identity clinics was an experiment lacking scientific basis.'"  

In April 2021, Angela Sämfjord, MD, child and adolescent psychiatrist at Sahlgrenska University Hospital, Gothenburg, Sweden, who started a child and adolescent clinic — the Lundstrom Gender Clinic — told Medscape Medical News she had reevaluated her approach even prior to "The Trans Train" documentaries and had resigned in 2018 because of her own fears about the lack of evidence for hormonal and surgical treatments of youth with gender dysphoria.

Following the debate that ensued after the airing of "The Trans Train" programs, the Swedish National Board of Health and Welfare (NBHW) published new recommendations in March 2021, which reflected a significant change in direction for the evaluation of gender dysphoria in minors, emphasizing the requirement for a thorough mental health assessment.

And in May 2021, Karolinska Children's Hospital, which houses one of the leading gender identity clinics in Sweden, announced it would stop the routine medical treatment of children with gender dysphoria under the age of 18, which meant a total ban on the prescribing of puberty blockers and cross-sex hormones to minors. Such treatment could henceforth only be carried out within the setting of a clinical trial approved by the EPM (Ethical Review Agency/Swedish Institutional Review Board), it said.

The remaining five gender identity clinics in Sweden decided upon their own rules, but in general, they have become much more cautious regarding medical treatment of minors within the past year, Medscape Medical News understands. Also, there is a desire in Sweden to reduce the number of gender identity clinics for minors from the current six to perhaps a maximum of three nationwide.

However, neither Indremo and colleagues nor Pang and colleagues mention the subsequent change to the Swedish NBHW recommendations on evaluation of gender dysphoria in minors in JAMA articles.

New NBHW recommendations about medical treatment of gender dysphoria with puberty blockers and cross-sex hormones for minors were due to be issued last year but have been delayed.

Debate in Other Countries

Sweden is not alone in discussing this issue. In 2020, Finland became the first country in the world to issue new guidelines that concluded there is a lack of quality evidence to support the use of hormonal interventions in adolescents with gender dysphoria.

This issue has been hotly debated in the UK — not least with the Keira Bell court case and two National Institute for Health and Clinical Excellence evidence reviews concluding there is a lack of data to support the use of puberty-blocking agents and "cross-sex" hormones in youth with gender dysphoria.

And a number of US states are attempting to outlaw the medical and surgical treatment of gender dysphoria in minors. Even healthcare professionals who have been treating young people with gender dysphoria for years — some of whom are transgender themselves — have started to speak out and are questioning what they call "sloppy care" given to many such youth.

Indeed, a recent survey shows that detransitioners — individuals who suffer from gender dysphoria, transition to the opposite sex but then regret their decision and detransition — are getting short shrift when it comes to care, with over half of the 100 surveyed saying they feel they did not receive adequate evaluation from a doctor or mental health professional before starting to transition.

And new draft standards of care for treating people with gender dysphoria by the World Professional Association for Transgender Health (WPATH) have drawn criticism from experts.

"First Do No Harm"

In their conclusion, Pang and coauthors say that, with respect to the media coverage of young people with gender dysphoria, "who are, after all, one of the most vulnerable subgroups within our society, perhaps our media should recall one of the core tenets of healthcare and ensure their stories 'first, do no harm.'"

However, in a commentary recently published in Child and Adolescent Mental Health,  Alison Clayton, MBBS, from the University of Melbourne, Australia, and coauthors from the Society for Evidence Based Medicine (SEGM), again point out that evidence reviews of the use of puberty blockers in young people with gender dysphoria show "there is very low certainty of the benefits of puberty blockers, an unknown risk of harm, and there is need for more rigorous research."

"The clinically prudent thing to do, if we aim to 'first, do no harm,' is to proceed with extreme caution, especially given the rapidly rising case numbers and novel gender dysphoria presentations," Clayton and colleagues conclude.

JAMA Netw Open. Published online February 2, 2022. Full text, Commentary

Indremo and coauthors have reported no relevant financial relationships. Pang hasreported being a member of the Australian Professional Association for Trans Health (AUSPATH) and its research committee. Commentary coauthor Steensma has reported being a member of WPATH.

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