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Referrals to gender clinics in Sweden drop after media coverage
Media coverage of transgender health care 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 (Sweden) University, 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 said 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 health care.
Stella O’Malley, a U.K.-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 said in an interview.
Ms. O’Malley herself made a documentary for Channel 4 in the United Kingdom, broadcast in 2018, called: “Trans Kids: It’s Time to Talk.”
Rapidly increasing numbers of youth, especially girls, question gender
As Ms. Indremo and coauthors explained – and as has been widely reported by this news organization – “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 acknowledged, “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, Ms. Indremo and colleagues noted 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 1,784 referrals, including 613 referrals in 2017, 663 referrals in 2018, and 508 referrals in 2019.
From the age-specific data that included 1,674 referrals, 359 individuals (21.4%) were younger than 13 years and 1,315 individuals (78.6%) were aged 13-18 years. From the assigned sex-specific data that included 1,435 referrals, 1,034 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, Ms. Indremo and colleagues said, “were criticized for being negatively biased and giving an oversimplified picture of transgender health care.”
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, and colleagues noted: “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.”
Dr. Pang and colleagues went on to say it is “the ... responsibility of media organizations in ensuring that stories depicting health care 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 benefited from gender-affirming care or the perspectives of health professionals with expertise in providing such care,” they added.
“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.
Ms. 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 suggested, 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 observed.
Dr. Pang and coauthors noted 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, said Ms. 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 health care 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 health care 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 this news organization 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 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. 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 Ms. Indremo and colleagues nor Dr. Pang and colleagues mentioned 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 in 2021 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 United Kingdom – 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 U.S. states are attempting to outlaw the medical and surgical treatment of gender dysphoria in minors. Even health care 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 have drawn criticism from experts.
‘First do no harm’
In their conclusion, Dr. Pang and coauthors said 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 health care 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, and coauthors again pointed 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 concluded.
Ms. Indremo and coauthors reported no relevant financial relationships. Dr. Pang reported being a member of the Australian Professional Association for Trans Health and its research committee. One commentary coauthor has reported being a member of WPATH.
A version of this article first appeared on Medscape.com.
Media coverage of transgender health care 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 (Sweden) University, 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 said 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 health care.
Stella O’Malley, a U.K.-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 said in an interview.
Ms. O’Malley herself made a documentary for Channel 4 in the United Kingdom, broadcast in 2018, called: “Trans Kids: It’s Time to Talk.”
Rapidly increasing numbers of youth, especially girls, question gender
As Ms. Indremo and coauthors explained – and as has been widely reported by this news organization – “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 acknowledged, “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, Ms. Indremo and colleagues noted 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 1,784 referrals, including 613 referrals in 2017, 663 referrals in 2018, and 508 referrals in 2019.
From the age-specific data that included 1,674 referrals, 359 individuals (21.4%) were younger than 13 years and 1,315 individuals (78.6%) were aged 13-18 years. From the assigned sex-specific data that included 1,435 referrals, 1,034 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, Ms. Indremo and colleagues said, “were criticized for being negatively biased and giving an oversimplified picture of transgender health care.”
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, and colleagues noted: “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.”
Dr. Pang and colleagues went on to say it is “the ... responsibility of media organizations in ensuring that stories depicting health care 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 benefited from gender-affirming care or the perspectives of health professionals with expertise in providing such care,” they added.
“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.
Ms. 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 suggested, 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 observed.
Dr. Pang and coauthors noted 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, said Ms. 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 health care 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 health care 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 this news organization 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 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. 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 Ms. Indremo and colleagues nor Dr. Pang and colleagues mentioned 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 in 2021 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 United Kingdom – 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 U.S. states are attempting to outlaw the medical and surgical treatment of gender dysphoria in minors. Even health care 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 have drawn criticism from experts.
‘First do no harm’
In their conclusion, Dr. Pang and coauthors said 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 health care 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, and coauthors again pointed 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 concluded.
Ms. Indremo and coauthors reported no relevant financial relationships. Dr. Pang reported being a member of the Australian Professional Association for Trans Health and its research committee. One commentary coauthor has reported being a member of WPATH.
A version of this article first appeared on Medscape.com.
Media coverage of transgender health care 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 (Sweden) University, 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 said 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 health care.
Stella O’Malley, a U.K.-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 said in an interview.
Ms. O’Malley herself made a documentary for Channel 4 in the United Kingdom, broadcast in 2018, called: “Trans Kids: It’s Time to Talk.”
Rapidly increasing numbers of youth, especially girls, question gender
As Ms. Indremo and coauthors explained – and as has been widely reported by this news organization – “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 acknowledged, “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, Ms. Indremo and colleagues noted 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 1,784 referrals, including 613 referrals in 2017, 663 referrals in 2018, and 508 referrals in 2019.
From the age-specific data that included 1,674 referrals, 359 individuals (21.4%) were younger than 13 years and 1,315 individuals (78.6%) were aged 13-18 years. From the assigned sex-specific data that included 1,435 referrals, 1,034 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, Ms. Indremo and colleagues said, “were criticized for being negatively biased and giving an oversimplified picture of transgender health care.”
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, and colleagues noted: “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.”
Dr. Pang and colleagues went on to say it is “the ... responsibility of media organizations in ensuring that stories depicting health care 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 benefited from gender-affirming care or the perspectives of health professionals with expertise in providing such care,” they added.
“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.
Ms. 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 suggested, 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 observed.
Dr. Pang and coauthors noted 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, said Ms. 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 health care 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 health care 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 this news organization 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 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. 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 Ms. Indremo and colleagues nor Dr. Pang and colleagues mentioned 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 in 2021 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 United Kingdom – 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 U.S. states are attempting to outlaw the medical and surgical treatment of gender dysphoria in minors. Even health care 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 have drawn criticism from experts.
‘First do no harm’
In their conclusion, Dr. Pang and coauthors said 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 health care 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, and coauthors again pointed 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 concluded.
Ms. Indremo and coauthors reported no relevant financial relationships. Dr. Pang reported being a member of the Australian Professional Association for Trans Health and its research committee. One commentary coauthor has reported being a member of WPATH.
A version of this article first appeared on Medscape.com.
FROM JAMA NETWORK OPEN
WPATH draft on gender dysphoria ‘skewed and misses urgent issues’
New draft guidance from the World Professional Association for Transgender Health (WPATH) is raising serious concerns among professionals caring for people with gender dysphoria, prompting claims that WPATH is an organization “captured by activists.”
Experts in adolescent and child psychology, as well as pediatric health, have expressed dismay that the WPATH Standards of Care (SOC) 8 appear to miss some of the most urgent issues in the field of transgender medicine and are considered to express a radical and unreserved leaning towards “gender-affirmation.”
The WPATH SOC 8 document is available for view and comment until Dec. 16 until 11.59 PM EST, after which time revisions will be made and the final version published.
Despite repeated attempts by this news organization to seek clarification on certain aspects of the guidance from members of the WPATH SOC 8 committee, requests were declined “until the guidance is finalized.”
According to the WPATH website, the SOC 8 aims to provide “clinical guidance for health professionals to assist transgender and gender diverse people with safe and effective pathways” to manage their gender dysphoria and potentially transition.
Such pathways may relate to primary care, gynecologic and urologic care, reproductive options, voice and communication therapy, mental health services, and hormonal or surgical treatments, among others.
WPATH adds that it was felt necessary to revise the existing SOC 7 (published in 2012) because of recent “globally unprecedented increase and visibility of transgender and gender-diverse people seeking support and gender-affirming medical treatment.”
Gender-affirming medical treatment means different things at different ages. In the case of kids with gender dysphoria who have not yet entered puberty associated with their birth sex, this might include prescribing so-called “puberty blockers” to delay natural puberty – gonadotrophin-releasing hormone analogs that are licensed for use in precocious puberty in children. Such agents have not been licensed for use in children with gender dysphoria, however, so any use for this purpose is off-label.
Following puberty blockade – or in cases where adolescents have already undergone natural puberty – the next step is to begin cross-sex hormones. So, for a female patient who wants to transition to male (FTM), that would be lifelong testosterone, and for a male who wants to be female (MTF), it involves lifelong estrogen. Again, use of such hormones in transgender individuals is entirely off-label.
Just last month, two of America’s leading experts on transgender medicine, both psychologists – including one who is transgender – told this news organization they were concerned that the quality of the evaluations of youth with gender dysphoria are being stifled by activists who are worried that open discussions will further stigmatize trans individuals.
They subsequently wrote an op-ed on the topic entitled, “The mental health establishment is failing trans kids,” which was finally published in the Washington Post on Nov. 24, after numerous other mainstream U.S. media outlets had rejected it.
New SOC 8 ‘is not evidence based,’ should not be new ‘gold standard’
One expert says the draft SOC 8 lacks balance and does not address certain issues, while paying undue attention to others that detract from real questions facing the field of transgender medicine, both in the United States and around the world.
Julia Mason, MD, is a pediatrician based in Gresham, Oregon, with a special interest in children and adolescents experiencing gender dysphoria. “The SOC 8 shows us that WPATH remains captured by activists,” she asserts.
Dr. Mason questions the integrity of WPATH based on what she has read in the draft SOC 8.
“We need a serious organization to take a sober look at the evidence, and that is why we have established the Society for Evidence-Based Gender Medicine [SEGM],” she noted. “This is what we do – we are looking at all of the evidence.”
Dr. Mason is a clinical advisor to SEGM, an organization set-up to evaluate current interventions and evidence on gender dysphoria.
The pediatrician has particular concerns regarding the child and adolescent chapters in the draft SOC 8. The adolescent chapter states: “Guidelines are meant to provide a gold standard based on the available evidence at this moment of time.”
Dr. Mason disputes this assertion. “This document should not be the new gold standard going forward, primarily because it is not evidence based.”
In an interview, Dr. Mason explained that WPATH say they used the “Delphi consensus process” to determine their recommendations, but “this process is designed for use with a panel of experts when evidence is lacking. I would say they didn’t have a panel of experts. They largely had a panel of activists, with a few experts.”
There is no mention, for example, of England’s National Institute for Health and Care Excellence (NICE) evidence reviews on puberty blockers and cross-sex hormones from earlier this year. These reviews determined that no studies have compared cross-sex hormones or puberty blockers with a control group and all follow-up periods for cross-sex hormones were relatively short.
This disappoints Dr. Mason: “These are significant; they are important documents.”
And much of the evidence quoted comes from the well-known and often-quoted “Dutch-protocol” study of 2011, in which the children studied were much younger at the time of their gender dysphoria, compared with the many adolescents who make up the current surge in presentation at gender clinics worldwide, she adds.
Rapid-onset GD: adolescents presenting late with little history
Dr. Mason also stresses that the SOC 8 does not address the most urgent issues in transgender medicine today, mainly because it does not address rapid-onset gender dysphoria (ROGD): “This is the dilemma of the 21st century; it’s new.”
ROGD – a term first coined in 2018 by researcher Lisa Littman, MD, MPH, now president of the Institute for Comprehensive Gender Dysphoria Research (ICGDR) – refers to the phenomena of adolescents expressing a desire to transition from their birth sex after little or no apparent previous indication.
However, the SOC 8 does make reference to aspects of adolescent development that might impact their decision-making processes around gender identity during teen years. The chapter on adolescents reads: “... adolescence is also often associated with increased risk-taking behaviors. Along with these notable changes ... individuation from parents ... [there is] often a heightened focus on peer relationships, which can be both positive and detrimental.”
The guidance goes on to point out that “it is critical to understand how all of these aspects of development may impact the decision-making for a given young person within their specific cultural context.”
Desistance and detransitioning not adequately addressed
Dr. Mason also says there is little mention “about detransitioning in this SOC [8], and ‘gender dysphoria’ and ‘trans’ are terms that are not defined.”
Likewise, there is no mention of desistance, she highlights, which is when individuals naturally resolve their dysphoria around their birth sex as they grow older.
The most recent published data seen by this news organization relates to a study from March 2021 that showed nearly 88% of boys who struggled with gender identity in childhood (approximate mean age 8 years and follow-up at approximate mean age 20 years) desisted. It reads: “Of the 139 participants, 17 (12.2%) were classified as ‘persisters’ and the remaining 122 (87.8%) were classified as desisters.”
“Most children with gender dysphoria will desist and lose their concept of themselves as being the opposite gender,” Dr. Mason explains. “This is the safest path for a child – desistance.”
“Transition can turn a healthy young person into a lifelong medical patient and has significant health risks,” she emphasizes, stressing that transition has not been shown to decrease the probability of suicide, or attempts at suicide, despite myriad claims saying otherwise.
“Before we were routinely transitioning kids at school, the vast majority of children grew out of their gender dysphoria. This history is not recognized at all in these SOC [8],” she maintains.
Ken Zucker, PhD, CPsych, an author of the study of desistance in boys, says the terms desistence and persistence of gender dysphoria have caused some consternation in certain circles.
An editor of the Archives of Sexual Behavior and professor in the department of psychiatry, University of Toronto, Dr. Zucker has published widely on the topic.
He told this news organization: “The terms persistence and desistance have become verboten among the WPATH cognoscenti. Perhaps the contributors to SOC 8 have come up with alternative descriptors.”
“The term ‘desistance’ is particularly annoying to some of the gender-affirming clinicians, because they don’t believe that desistance is bona fide,” Dr. Zucker points out.
“The desistance resisters are like anti-vaxxers – nothing one can provide as evidence for the efficacy of vaccines is sufficient. There will always be a new objection.”
Other mental health issues, in particular ADHD and autism
It is also widely acknowledged that there is a higher rate of neurodevelopmental and psychiatric diagnoses in individuals with gender dysphoria. For example, one 2020 study found that transgender people were three to six times as likely to be autistic as cisgender people (those whose gender is aligned with their birth sex).
Statement one in the chapter on adolescents in draft WPATH SOC 8 does give a nod to this, pointing out that health professionals working with gender diverse adolescents “should receive training and develop expertise in autism spectrum disorders and other neurodiversity conditions.”
It also notes that in some cases “a more extended assessment process may be useful, such as for youth with more complex presentations (e.g., complicated mental health histories, co-occurring autism spectrum characteristics in particular) and an absence of experienced childhood gender incongruence.”
However, Dr. Mason stresses that underlying mental health issues are central to addressing how to manage a significant number of these patients.
“If a young person has ADHD or autism, they are not ready to make decisions about the rest of their life at age 18. Even a neurotypical young person is still developing their frontal cortex in their early 20s, and it takes longer for those with ADHD or on the autism spectrum.”
She firmly believes that the guidance does not give sufficient consideration to comorbidities in people over the age of 18.
According to their [SOC 8] guidelines, “once someone is 18 they are ready for anything,” says Dr. Mason.
Offering some explanation for the increased prevalence of ADHD and autism in those with gender dysphoria, Dr. Mason notes that children can have “hyperfocus” and those with autism will fixate on a particular area of interest. “If a child is unhappy in their life, and this can be more likely if someone is neuro-atypical, then it is likely that the individual might go online and find this one solution [for example, a transgender identity] that seems to fix everything.”
Perceptions of femininity and masculinity can also be extra challenging for a child with autism, Dr. Mason says. “It is relatively easy for an autistic girl to feel like she should be a boy because the rules of femininity are composed of nonverbal, subtle behaviors that can be difficult to pick up on,” she points out. “An autistic child who isn’t particularly good at nonverbal communication might not pick up on these and thus feel they are not very ‘female.’”
“There’s a whole lot of grass-is-greener-type thinking. Girls think boys have an easier life, and boys think girls have an easier life. I know some detransitioners who have spoken eloquently about realizing their mistake on this,” she adds.
Other parts of the SOC 8 that Dr. Mason disagrees with include the recommendation in the adolescent chapter that 14-year-olds are mature enough to start cross-sex hormones, that is, giving testosterone to a female who wants to transition to male or estrogen to a male who wishes to transition to female. “I think that’s far too young,” she asserts.
And she points out that the document states 17-year-olds are ready for genital reassignment surgery. Again, she believes this is far too young.
“Also, the SOC 8 document does not clarify who is appropriate for surgery. Whenever surgery is discussed, it becomes very vague,” she said.
A version of this article first appeared on Medscape.com.
New draft guidance from the World Professional Association for Transgender Health (WPATH) is raising serious concerns among professionals caring for people with gender dysphoria, prompting claims that WPATH is an organization “captured by activists.”
Experts in adolescent and child psychology, as well as pediatric health, have expressed dismay that the WPATH Standards of Care (SOC) 8 appear to miss some of the most urgent issues in the field of transgender medicine and are considered to express a radical and unreserved leaning towards “gender-affirmation.”
The WPATH SOC 8 document is available for view and comment until Dec. 16 until 11.59 PM EST, after which time revisions will be made and the final version published.
Despite repeated attempts by this news organization to seek clarification on certain aspects of the guidance from members of the WPATH SOC 8 committee, requests were declined “until the guidance is finalized.”
According to the WPATH website, the SOC 8 aims to provide “clinical guidance for health professionals to assist transgender and gender diverse people with safe and effective pathways” to manage their gender dysphoria and potentially transition.
Such pathways may relate to primary care, gynecologic and urologic care, reproductive options, voice and communication therapy, mental health services, and hormonal or surgical treatments, among others.
WPATH adds that it was felt necessary to revise the existing SOC 7 (published in 2012) because of recent “globally unprecedented increase and visibility of transgender and gender-diverse people seeking support and gender-affirming medical treatment.”
Gender-affirming medical treatment means different things at different ages. In the case of kids with gender dysphoria who have not yet entered puberty associated with their birth sex, this might include prescribing so-called “puberty blockers” to delay natural puberty – gonadotrophin-releasing hormone analogs that are licensed for use in precocious puberty in children. Such agents have not been licensed for use in children with gender dysphoria, however, so any use for this purpose is off-label.
Following puberty blockade – or in cases where adolescents have already undergone natural puberty – the next step is to begin cross-sex hormones. So, for a female patient who wants to transition to male (FTM), that would be lifelong testosterone, and for a male who wants to be female (MTF), it involves lifelong estrogen. Again, use of such hormones in transgender individuals is entirely off-label.
Just last month, two of America’s leading experts on transgender medicine, both psychologists – including one who is transgender – told this news organization they were concerned that the quality of the evaluations of youth with gender dysphoria are being stifled by activists who are worried that open discussions will further stigmatize trans individuals.
They subsequently wrote an op-ed on the topic entitled, “The mental health establishment is failing trans kids,” which was finally published in the Washington Post on Nov. 24, after numerous other mainstream U.S. media outlets had rejected it.
New SOC 8 ‘is not evidence based,’ should not be new ‘gold standard’
One expert says the draft SOC 8 lacks balance and does not address certain issues, while paying undue attention to others that detract from real questions facing the field of transgender medicine, both in the United States and around the world.
Julia Mason, MD, is a pediatrician based in Gresham, Oregon, with a special interest in children and adolescents experiencing gender dysphoria. “The SOC 8 shows us that WPATH remains captured by activists,” she asserts.
Dr. Mason questions the integrity of WPATH based on what she has read in the draft SOC 8.
“We need a serious organization to take a sober look at the evidence, and that is why we have established the Society for Evidence-Based Gender Medicine [SEGM],” she noted. “This is what we do – we are looking at all of the evidence.”
Dr. Mason is a clinical advisor to SEGM, an organization set-up to evaluate current interventions and evidence on gender dysphoria.
The pediatrician has particular concerns regarding the child and adolescent chapters in the draft SOC 8. The adolescent chapter states: “Guidelines are meant to provide a gold standard based on the available evidence at this moment of time.”
Dr. Mason disputes this assertion. “This document should not be the new gold standard going forward, primarily because it is not evidence based.”
In an interview, Dr. Mason explained that WPATH say they used the “Delphi consensus process” to determine their recommendations, but “this process is designed for use with a panel of experts when evidence is lacking. I would say they didn’t have a panel of experts. They largely had a panel of activists, with a few experts.”
There is no mention, for example, of England’s National Institute for Health and Care Excellence (NICE) evidence reviews on puberty blockers and cross-sex hormones from earlier this year. These reviews determined that no studies have compared cross-sex hormones or puberty blockers with a control group and all follow-up periods for cross-sex hormones were relatively short.
This disappoints Dr. Mason: “These are significant; they are important documents.”
And much of the evidence quoted comes from the well-known and often-quoted “Dutch-protocol” study of 2011, in which the children studied were much younger at the time of their gender dysphoria, compared with the many adolescents who make up the current surge in presentation at gender clinics worldwide, she adds.
Rapid-onset GD: adolescents presenting late with little history
Dr. Mason also stresses that the SOC 8 does not address the most urgent issues in transgender medicine today, mainly because it does not address rapid-onset gender dysphoria (ROGD): “This is the dilemma of the 21st century; it’s new.”
ROGD – a term first coined in 2018 by researcher Lisa Littman, MD, MPH, now president of the Institute for Comprehensive Gender Dysphoria Research (ICGDR) – refers to the phenomena of adolescents expressing a desire to transition from their birth sex after little or no apparent previous indication.
However, the SOC 8 does make reference to aspects of adolescent development that might impact their decision-making processes around gender identity during teen years. The chapter on adolescents reads: “... adolescence is also often associated with increased risk-taking behaviors. Along with these notable changes ... individuation from parents ... [there is] often a heightened focus on peer relationships, which can be both positive and detrimental.”
The guidance goes on to point out that “it is critical to understand how all of these aspects of development may impact the decision-making for a given young person within their specific cultural context.”
Desistance and detransitioning not adequately addressed
Dr. Mason also says there is little mention “about detransitioning in this SOC [8], and ‘gender dysphoria’ and ‘trans’ are terms that are not defined.”
Likewise, there is no mention of desistance, she highlights, which is when individuals naturally resolve their dysphoria around their birth sex as they grow older.
The most recent published data seen by this news organization relates to a study from March 2021 that showed nearly 88% of boys who struggled with gender identity in childhood (approximate mean age 8 years and follow-up at approximate mean age 20 years) desisted. It reads: “Of the 139 participants, 17 (12.2%) were classified as ‘persisters’ and the remaining 122 (87.8%) were classified as desisters.”
“Most children with gender dysphoria will desist and lose their concept of themselves as being the opposite gender,” Dr. Mason explains. “This is the safest path for a child – desistance.”
“Transition can turn a healthy young person into a lifelong medical patient and has significant health risks,” she emphasizes, stressing that transition has not been shown to decrease the probability of suicide, or attempts at suicide, despite myriad claims saying otherwise.
“Before we were routinely transitioning kids at school, the vast majority of children grew out of their gender dysphoria. This history is not recognized at all in these SOC [8],” she maintains.
Ken Zucker, PhD, CPsych, an author of the study of desistance in boys, says the terms desistence and persistence of gender dysphoria have caused some consternation in certain circles.
An editor of the Archives of Sexual Behavior and professor in the department of psychiatry, University of Toronto, Dr. Zucker has published widely on the topic.
He told this news organization: “The terms persistence and desistance have become verboten among the WPATH cognoscenti. Perhaps the contributors to SOC 8 have come up with alternative descriptors.”
“The term ‘desistance’ is particularly annoying to some of the gender-affirming clinicians, because they don’t believe that desistance is bona fide,” Dr. Zucker points out.
“The desistance resisters are like anti-vaxxers – nothing one can provide as evidence for the efficacy of vaccines is sufficient. There will always be a new objection.”
Other mental health issues, in particular ADHD and autism
It is also widely acknowledged that there is a higher rate of neurodevelopmental and psychiatric diagnoses in individuals with gender dysphoria. For example, one 2020 study found that transgender people were three to six times as likely to be autistic as cisgender people (those whose gender is aligned with their birth sex).
Statement one in the chapter on adolescents in draft WPATH SOC 8 does give a nod to this, pointing out that health professionals working with gender diverse adolescents “should receive training and develop expertise in autism spectrum disorders and other neurodiversity conditions.”
It also notes that in some cases “a more extended assessment process may be useful, such as for youth with more complex presentations (e.g., complicated mental health histories, co-occurring autism spectrum characteristics in particular) and an absence of experienced childhood gender incongruence.”
However, Dr. Mason stresses that underlying mental health issues are central to addressing how to manage a significant number of these patients.
“If a young person has ADHD or autism, they are not ready to make decisions about the rest of their life at age 18. Even a neurotypical young person is still developing their frontal cortex in their early 20s, and it takes longer for those with ADHD or on the autism spectrum.”
She firmly believes that the guidance does not give sufficient consideration to comorbidities in people over the age of 18.
According to their [SOC 8] guidelines, “once someone is 18 they are ready for anything,” says Dr. Mason.
Offering some explanation for the increased prevalence of ADHD and autism in those with gender dysphoria, Dr. Mason notes that children can have “hyperfocus” and those with autism will fixate on a particular area of interest. “If a child is unhappy in their life, and this can be more likely if someone is neuro-atypical, then it is likely that the individual might go online and find this one solution [for example, a transgender identity] that seems to fix everything.”
Perceptions of femininity and masculinity can also be extra challenging for a child with autism, Dr. Mason says. “It is relatively easy for an autistic girl to feel like she should be a boy because the rules of femininity are composed of nonverbal, subtle behaviors that can be difficult to pick up on,” she points out. “An autistic child who isn’t particularly good at nonverbal communication might not pick up on these and thus feel they are not very ‘female.’”
“There’s a whole lot of grass-is-greener-type thinking. Girls think boys have an easier life, and boys think girls have an easier life. I know some detransitioners who have spoken eloquently about realizing their mistake on this,” she adds.
Other parts of the SOC 8 that Dr. Mason disagrees with include the recommendation in the adolescent chapter that 14-year-olds are mature enough to start cross-sex hormones, that is, giving testosterone to a female who wants to transition to male or estrogen to a male who wishes to transition to female. “I think that’s far too young,” she asserts.
And she points out that the document states 17-year-olds are ready for genital reassignment surgery. Again, she believes this is far too young.
“Also, the SOC 8 document does not clarify who is appropriate for surgery. Whenever surgery is discussed, it becomes very vague,” she said.
A version of this article first appeared on Medscape.com.
New draft guidance from the World Professional Association for Transgender Health (WPATH) is raising serious concerns among professionals caring for people with gender dysphoria, prompting claims that WPATH is an organization “captured by activists.”
Experts in adolescent and child psychology, as well as pediatric health, have expressed dismay that the WPATH Standards of Care (SOC) 8 appear to miss some of the most urgent issues in the field of transgender medicine and are considered to express a radical and unreserved leaning towards “gender-affirmation.”
The WPATH SOC 8 document is available for view and comment until Dec. 16 until 11.59 PM EST, after which time revisions will be made and the final version published.
Despite repeated attempts by this news organization to seek clarification on certain aspects of the guidance from members of the WPATH SOC 8 committee, requests were declined “until the guidance is finalized.”
According to the WPATH website, the SOC 8 aims to provide “clinical guidance for health professionals to assist transgender and gender diverse people with safe and effective pathways” to manage their gender dysphoria and potentially transition.
Such pathways may relate to primary care, gynecologic and urologic care, reproductive options, voice and communication therapy, mental health services, and hormonal or surgical treatments, among others.
WPATH adds that it was felt necessary to revise the existing SOC 7 (published in 2012) because of recent “globally unprecedented increase and visibility of transgender and gender-diverse people seeking support and gender-affirming medical treatment.”
Gender-affirming medical treatment means different things at different ages. In the case of kids with gender dysphoria who have not yet entered puberty associated with their birth sex, this might include prescribing so-called “puberty blockers” to delay natural puberty – gonadotrophin-releasing hormone analogs that are licensed for use in precocious puberty in children. Such agents have not been licensed for use in children with gender dysphoria, however, so any use for this purpose is off-label.
Following puberty blockade – or in cases where adolescents have already undergone natural puberty – the next step is to begin cross-sex hormones. So, for a female patient who wants to transition to male (FTM), that would be lifelong testosterone, and for a male who wants to be female (MTF), it involves lifelong estrogen. Again, use of such hormones in transgender individuals is entirely off-label.
Just last month, two of America’s leading experts on transgender medicine, both psychologists – including one who is transgender – told this news organization they were concerned that the quality of the evaluations of youth with gender dysphoria are being stifled by activists who are worried that open discussions will further stigmatize trans individuals.
They subsequently wrote an op-ed on the topic entitled, “The mental health establishment is failing trans kids,” which was finally published in the Washington Post on Nov. 24, after numerous other mainstream U.S. media outlets had rejected it.
New SOC 8 ‘is not evidence based,’ should not be new ‘gold standard’
One expert says the draft SOC 8 lacks balance and does not address certain issues, while paying undue attention to others that detract from real questions facing the field of transgender medicine, both in the United States and around the world.
Julia Mason, MD, is a pediatrician based in Gresham, Oregon, with a special interest in children and adolescents experiencing gender dysphoria. “The SOC 8 shows us that WPATH remains captured by activists,” she asserts.
Dr. Mason questions the integrity of WPATH based on what she has read in the draft SOC 8.
“We need a serious organization to take a sober look at the evidence, and that is why we have established the Society for Evidence-Based Gender Medicine [SEGM],” she noted. “This is what we do – we are looking at all of the evidence.”
Dr. Mason is a clinical advisor to SEGM, an organization set-up to evaluate current interventions and evidence on gender dysphoria.
The pediatrician has particular concerns regarding the child and adolescent chapters in the draft SOC 8. The adolescent chapter states: “Guidelines are meant to provide a gold standard based on the available evidence at this moment of time.”
Dr. Mason disputes this assertion. “This document should not be the new gold standard going forward, primarily because it is not evidence based.”
In an interview, Dr. Mason explained that WPATH say they used the “Delphi consensus process” to determine their recommendations, but “this process is designed for use with a panel of experts when evidence is lacking. I would say they didn’t have a panel of experts. They largely had a panel of activists, with a few experts.”
There is no mention, for example, of England’s National Institute for Health and Care Excellence (NICE) evidence reviews on puberty blockers and cross-sex hormones from earlier this year. These reviews determined that no studies have compared cross-sex hormones or puberty blockers with a control group and all follow-up periods for cross-sex hormones were relatively short.
This disappoints Dr. Mason: “These are significant; they are important documents.”
And much of the evidence quoted comes from the well-known and often-quoted “Dutch-protocol” study of 2011, in which the children studied were much younger at the time of their gender dysphoria, compared with the many adolescents who make up the current surge in presentation at gender clinics worldwide, she adds.
Rapid-onset GD: adolescents presenting late with little history
Dr. Mason also stresses that the SOC 8 does not address the most urgent issues in transgender medicine today, mainly because it does not address rapid-onset gender dysphoria (ROGD): “This is the dilemma of the 21st century; it’s new.”
ROGD – a term first coined in 2018 by researcher Lisa Littman, MD, MPH, now president of the Institute for Comprehensive Gender Dysphoria Research (ICGDR) – refers to the phenomena of adolescents expressing a desire to transition from their birth sex after little or no apparent previous indication.
However, the SOC 8 does make reference to aspects of adolescent development that might impact their decision-making processes around gender identity during teen years. The chapter on adolescents reads: “... adolescence is also often associated with increased risk-taking behaviors. Along with these notable changes ... individuation from parents ... [there is] often a heightened focus on peer relationships, which can be both positive and detrimental.”
The guidance goes on to point out that “it is critical to understand how all of these aspects of development may impact the decision-making for a given young person within their specific cultural context.”
Desistance and detransitioning not adequately addressed
Dr. Mason also says there is little mention “about detransitioning in this SOC [8], and ‘gender dysphoria’ and ‘trans’ are terms that are not defined.”
Likewise, there is no mention of desistance, she highlights, which is when individuals naturally resolve their dysphoria around their birth sex as they grow older.
The most recent published data seen by this news organization relates to a study from March 2021 that showed nearly 88% of boys who struggled with gender identity in childhood (approximate mean age 8 years and follow-up at approximate mean age 20 years) desisted. It reads: “Of the 139 participants, 17 (12.2%) were classified as ‘persisters’ and the remaining 122 (87.8%) were classified as desisters.”
“Most children with gender dysphoria will desist and lose their concept of themselves as being the opposite gender,” Dr. Mason explains. “This is the safest path for a child – desistance.”
“Transition can turn a healthy young person into a lifelong medical patient and has significant health risks,” she emphasizes, stressing that transition has not been shown to decrease the probability of suicide, or attempts at suicide, despite myriad claims saying otherwise.
“Before we were routinely transitioning kids at school, the vast majority of children grew out of their gender dysphoria. This history is not recognized at all in these SOC [8],” she maintains.
Ken Zucker, PhD, CPsych, an author of the study of desistance in boys, says the terms desistence and persistence of gender dysphoria have caused some consternation in certain circles.
An editor of the Archives of Sexual Behavior and professor in the department of psychiatry, University of Toronto, Dr. Zucker has published widely on the topic.
He told this news organization: “The terms persistence and desistance have become verboten among the WPATH cognoscenti. Perhaps the contributors to SOC 8 have come up with alternative descriptors.”
“The term ‘desistance’ is particularly annoying to some of the gender-affirming clinicians, because they don’t believe that desistance is bona fide,” Dr. Zucker points out.
“The desistance resisters are like anti-vaxxers – nothing one can provide as evidence for the efficacy of vaccines is sufficient. There will always be a new objection.”
Other mental health issues, in particular ADHD and autism
It is also widely acknowledged that there is a higher rate of neurodevelopmental and psychiatric diagnoses in individuals with gender dysphoria. For example, one 2020 study found that transgender people were three to six times as likely to be autistic as cisgender people (those whose gender is aligned with their birth sex).
Statement one in the chapter on adolescents in draft WPATH SOC 8 does give a nod to this, pointing out that health professionals working with gender diverse adolescents “should receive training and develop expertise in autism spectrum disorders and other neurodiversity conditions.”
It also notes that in some cases “a more extended assessment process may be useful, such as for youth with more complex presentations (e.g., complicated mental health histories, co-occurring autism spectrum characteristics in particular) and an absence of experienced childhood gender incongruence.”
However, Dr. Mason stresses that underlying mental health issues are central to addressing how to manage a significant number of these patients.
“If a young person has ADHD or autism, they are not ready to make decisions about the rest of their life at age 18. Even a neurotypical young person is still developing their frontal cortex in their early 20s, and it takes longer for those with ADHD or on the autism spectrum.”
She firmly believes that the guidance does not give sufficient consideration to comorbidities in people over the age of 18.
According to their [SOC 8] guidelines, “once someone is 18 they are ready for anything,” says Dr. Mason.
Offering some explanation for the increased prevalence of ADHD and autism in those with gender dysphoria, Dr. Mason notes that children can have “hyperfocus” and those with autism will fixate on a particular area of interest. “If a child is unhappy in their life, and this can be more likely if someone is neuro-atypical, then it is likely that the individual might go online and find this one solution [for example, a transgender identity] that seems to fix everything.”
Perceptions of femininity and masculinity can also be extra challenging for a child with autism, Dr. Mason says. “It is relatively easy for an autistic girl to feel like she should be a boy because the rules of femininity are composed of nonverbal, subtle behaviors that can be difficult to pick up on,” she points out. “An autistic child who isn’t particularly good at nonverbal communication might not pick up on these and thus feel they are not very ‘female.’”
“There’s a whole lot of grass-is-greener-type thinking. Girls think boys have an easier life, and boys think girls have an easier life. I know some detransitioners who have spoken eloquently about realizing their mistake on this,” she adds.
Other parts of the SOC 8 that Dr. Mason disagrees with include the recommendation in the adolescent chapter that 14-year-olds are mature enough to start cross-sex hormones, that is, giving testosterone to a female who wants to transition to male or estrogen to a male who wishes to transition to female. “I think that’s far too young,” she asserts.
And she points out that the document states 17-year-olds are ready for genital reassignment surgery. Again, she believes this is far too young.
“Also, the SOC 8 document does not clarify who is appropriate for surgery. Whenever surgery is discussed, it becomes very vague,” she said.
A version of this article first appeared on Medscape.com.
‘Top’ surgery for trans youth: Advance or dangerous medicine?
Is the gender-affirmative treatment approach an example of “medicine continuing on its progressive march of improving human life” or “a manifestation of dangerous medicine that ... will cause more harm than benefit to vulnerable youths?” wonders an Australian psychiatrist in a newly published letter that addresses the controversial procedure of masculinizing chest surgery – a double mastectomy – in young people with gender dysphoria (GD).
Alison Clayton, MBBS, explores the evidence for masculinizing chest surgery and looks back at examples of “dangerous medicine” in the past century while looking forward, wondering how future medics will retrospectively view gender affirmative treatment, especially so-called “top” or masculinizing chest surgery, which is in actual fact a double mastectomy, in a letter published Nov. 22 in the Archives of Sexual Behavior.
“It is surprising that clinicians and researchers claim chest surgery for GD youth is an evidence-based intervention, rather than acknowledging it is an experimental treatment that requires more rigorous and human research ethics committee [HREC] approved research,” she writes.
“The medical profession needs to consider whether, in its championing of the gender-affirmative approach for GD youth, it is also acting brashly and making mistakes that will negatively impact some young people for the rest of their lives,” she continues.
Ms. Clayton, after many years of experience as a psychiatrist, has recently returned to postgraduate research into the history of 20th-century psychiatry at the School of Historical and Philosophical Studies, University of Melbourne.
Meanwhile, the authors of a viewpoint published online Dec. 1 in JAMA Surgery, agree with Ms. Clayton on the issue of a lack of long-term studies on which to base decisions, particularly when it comes to insurance coverage for gender surgeries in the United States.
Nnenaya Agochukwu-Mmonu, MD, and colleagues recommend use of the coverage with evidence development (CED) approach, which would, they say, provide a “rigorous evidence base for gender-affirming interventions and surgery while simultaneously allowing access and provisional coverage for these services.”
Threefold increase in gender-affirming surgeries in past decade
There has been a threefold rise in the rate of gender-affirming surgeries in the United States in the past decade, which can be attributed to increased recognition of gender dysphoria, decreasing social stigma toward these individuals, greater clinical experience, and expanding insurance coverage, according to Dr. Agochukwu-Mmonu, of the department of urology, NYU School of Medicine, and coauthors.
Ms. Clayton meanwhile notes that of the increasing number of adolescents being referred for treatment for gender dysphoria in the Western world, most were born female and many have “a history of psychiatric illness or neurodevelopmental disorders.”
Many of these youngsters also show a “high demand” for surgical removal of breasts, she adds, noting that this operation is being undertaken as routine treatment in patients as young as 13, with some clinicians arguing that “this surgery is an evidence-based intervention that improves mental health outcomes, and that it is discriminatory for it not to be available.”
She also notes that “chest dysphoria” is “a recently created term meaning discomfort with one’s breasts.” The term “breast” is therefore largely absent in publications talking about this surgery as it “may cause distress for transgender males,” to quote one source, Ms. Clayton says, and “this seems part of a broader pattern of removing this term from clinical language,” according to another article on the subject.
Ms. Clayton also says, “There are only a handful of published studies focusing on the potential benefits of masculinizing chest surgery,” and notes that these mostly report on surgery for individuals younger than 21 years old.
Significant methodological flaws in existing research
One study of 14 postsurgical youth (nine of whom were under 18 years) found that “all reported high aesthetic satisfaction and most self-reported low complication rates and improvement in mood.”
Another cross-sectional retrospective survey looked at 68 postsurgical transmasculine youth (72% of the eligible postsurgical population); 49% had surgery when younger than age 18, with the youngest being age 13 and the oldest age 24. At the time of the survey, only 14% of participants were more than 2 years postsurgery. The postsurgical participants were found to have reduced chest dysphoria (the outcome) compared with a convenience and nonmatched comparison sample of nonsurgical transmasculine youth.
And a 2021 qualitative study of 30 transmale youth – about half of whom had undergone chest surgery – concluded that the postsurgical cohort experienced “tremendous” benefits in chest dysphoria and a range of psychological outcomes.
On this particular study, Ms. Clayton notes that “in my opinion, they did not provide enough detail for the reader to make an informed judgment regarding this latter claim.”
She goes on to discuss genital surgery, sometimes called full gender-affirming surgery (or “bottom surgery”), and says proponents of these operations point out that the main objections to them in minors is to “surgical sterilization, and people get super worked up about that ... it is a barrier we have to overcome, and I think we are going to.”
Ms. Clayton asserts that it seems “this barrier is already being overcome, as it has been reported that in the United States, genital surgery is being undertaken on gender dysphoric minors as young as 15 years old.”
Reflecting on the available evidence, Ms. Clayton highlights the significant methodological flaws that limit the extent to which surgery can be linked to short-term improved mental health outcomes and adds that information on long-term outcomes and rates of regret is unavailable.
She also asserts that the research fails to assess “a role for psychological interventions which could be utilized, as a least-harm intervention, until maturity is reached.”
Historical examples of experimental medicine
Ms. Clayton goes on to draw parallels with experimental medicine performed on homosexuals in the 20th century, highlighting the medical and surgical interventions, which included metrazol convulsive therapy, chemical castration with estrogens, surgical castration, clitoridectomy, brain operations, and aversive electrotherapy.
She also refers to the historical practice of hormonal treatment for “tall girls” and “short boys” between the 1960s and 1980s. Hormones were given to young people who did not have any medical reason underpinning their stature but were distressed, and society considered their height to have a negative social impact.
“With the encouragement of physicians and school nurses, enthusiastic media promotion, and pharmaceutical companies’ advertising, parents sought hormonal interventions,” she writes, adding that, at the time the hormones were considered safe, but long-term adverse effects emerged, including impaired fertility and increased risk of cancers.
“This seems another part of the story of medicine acting to reinforce society’s sex stereotypes, and for some patients it came at disastrous personal cost,” writes Ms. Clayton.
The gender-affirming approach is based on endorsing the adolescent’s stated gender identity with minimal questioning and “that they should be supported to undertake social transition, medical transition, masculinizing chest surgery, and, some also argue, genital surgery,” she writes.
Objectors to this approach pinpoint the “limited and low-quality evidence base for the benefits” but also “the irreversible and long-term adverse impacts of these treatments on fertility and sexual function, as well as on bone, brain, and cardiovascular functioning.”
Current studies of gender-affirming surgeries lack standardization
In their viewpoint, Dr. Agochukwu-Mmonu and colleagues state that use of a CED would not only help provide an evidence base but would also ensure better-informed policy access and coverage decisions to help standardize approaches to gender surgery in the United States.
Currently, they note, “Studies examining the mental health benefit for patients undergoing gender-affirming surgeries include measures that lack standardization, evaluate different interventions (that is, surgeries are rarely done with concurrent hormone administration), include dissimilar patient populations, and use different study designs.”
This difference in study design leads to variation in reported outcomes. Although many studies have shown benefit, others report that patients have unrealistic expectations or experience regret, Dr. Agochukwu-Mmonu and coauthors conclude.
CED provides an option that would enable informed decisions. “It allows the deliberate use of innovative therapies, explicit integration of transgender and nonbinary patient input, and ongoing systematic evaluation aimed to identify specific patient groups who would or would not benefit from their use.”
This leads back to Ms. Clayton’s central question around whether the gender-affirmative approach is a medical advance or dangerous medicine.
“Why are these experimental interventions, with inherent risks and scarce, low-quality evidence for benefits being implemented outside HREC-regulated clinical trial settings?’” she wonders.
Ms. Clayton has declared no conflicts of interest.
A version of this article first appeared on Medscape.com.
Is the gender-affirmative treatment approach an example of “medicine continuing on its progressive march of improving human life” or “a manifestation of dangerous medicine that ... will cause more harm than benefit to vulnerable youths?” wonders an Australian psychiatrist in a newly published letter that addresses the controversial procedure of masculinizing chest surgery – a double mastectomy – in young people with gender dysphoria (GD).
Alison Clayton, MBBS, explores the evidence for masculinizing chest surgery and looks back at examples of “dangerous medicine” in the past century while looking forward, wondering how future medics will retrospectively view gender affirmative treatment, especially so-called “top” or masculinizing chest surgery, which is in actual fact a double mastectomy, in a letter published Nov. 22 in the Archives of Sexual Behavior.
“It is surprising that clinicians and researchers claim chest surgery for GD youth is an evidence-based intervention, rather than acknowledging it is an experimental treatment that requires more rigorous and human research ethics committee [HREC] approved research,” she writes.
“The medical profession needs to consider whether, in its championing of the gender-affirmative approach for GD youth, it is also acting brashly and making mistakes that will negatively impact some young people for the rest of their lives,” she continues.
Ms. Clayton, after many years of experience as a psychiatrist, has recently returned to postgraduate research into the history of 20th-century psychiatry at the School of Historical and Philosophical Studies, University of Melbourne.
Meanwhile, the authors of a viewpoint published online Dec. 1 in JAMA Surgery, agree with Ms. Clayton on the issue of a lack of long-term studies on which to base decisions, particularly when it comes to insurance coverage for gender surgeries in the United States.
Nnenaya Agochukwu-Mmonu, MD, and colleagues recommend use of the coverage with evidence development (CED) approach, which would, they say, provide a “rigorous evidence base for gender-affirming interventions and surgery while simultaneously allowing access and provisional coverage for these services.”
Threefold increase in gender-affirming surgeries in past decade
There has been a threefold rise in the rate of gender-affirming surgeries in the United States in the past decade, which can be attributed to increased recognition of gender dysphoria, decreasing social stigma toward these individuals, greater clinical experience, and expanding insurance coverage, according to Dr. Agochukwu-Mmonu, of the department of urology, NYU School of Medicine, and coauthors.
Ms. Clayton meanwhile notes that of the increasing number of adolescents being referred for treatment for gender dysphoria in the Western world, most were born female and many have “a history of psychiatric illness or neurodevelopmental disorders.”
Many of these youngsters also show a “high demand” for surgical removal of breasts, she adds, noting that this operation is being undertaken as routine treatment in patients as young as 13, with some clinicians arguing that “this surgery is an evidence-based intervention that improves mental health outcomes, and that it is discriminatory for it not to be available.”
She also notes that “chest dysphoria” is “a recently created term meaning discomfort with one’s breasts.” The term “breast” is therefore largely absent in publications talking about this surgery as it “may cause distress for transgender males,” to quote one source, Ms. Clayton says, and “this seems part of a broader pattern of removing this term from clinical language,” according to another article on the subject.
Ms. Clayton also says, “There are only a handful of published studies focusing on the potential benefits of masculinizing chest surgery,” and notes that these mostly report on surgery for individuals younger than 21 years old.
Significant methodological flaws in existing research
One study of 14 postsurgical youth (nine of whom were under 18 years) found that “all reported high aesthetic satisfaction and most self-reported low complication rates and improvement in mood.”
Another cross-sectional retrospective survey looked at 68 postsurgical transmasculine youth (72% of the eligible postsurgical population); 49% had surgery when younger than age 18, with the youngest being age 13 and the oldest age 24. At the time of the survey, only 14% of participants were more than 2 years postsurgery. The postsurgical participants were found to have reduced chest dysphoria (the outcome) compared with a convenience and nonmatched comparison sample of nonsurgical transmasculine youth.
And a 2021 qualitative study of 30 transmale youth – about half of whom had undergone chest surgery – concluded that the postsurgical cohort experienced “tremendous” benefits in chest dysphoria and a range of psychological outcomes.
On this particular study, Ms. Clayton notes that “in my opinion, they did not provide enough detail for the reader to make an informed judgment regarding this latter claim.”
She goes on to discuss genital surgery, sometimes called full gender-affirming surgery (or “bottom surgery”), and says proponents of these operations point out that the main objections to them in minors is to “surgical sterilization, and people get super worked up about that ... it is a barrier we have to overcome, and I think we are going to.”
Ms. Clayton asserts that it seems “this barrier is already being overcome, as it has been reported that in the United States, genital surgery is being undertaken on gender dysphoric minors as young as 15 years old.”
Reflecting on the available evidence, Ms. Clayton highlights the significant methodological flaws that limit the extent to which surgery can be linked to short-term improved mental health outcomes and adds that information on long-term outcomes and rates of regret is unavailable.
She also asserts that the research fails to assess “a role for psychological interventions which could be utilized, as a least-harm intervention, until maturity is reached.”
Historical examples of experimental medicine
Ms. Clayton goes on to draw parallels with experimental medicine performed on homosexuals in the 20th century, highlighting the medical and surgical interventions, which included metrazol convulsive therapy, chemical castration with estrogens, surgical castration, clitoridectomy, brain operations, and aversive electrotherapy.
She also refers to the historical practice of hormonal treatment for “tall girls” and “short boys” between the 1960s and 1980s. Hormones were given to young people who did not have any medical reason underpinning their stature but were distressed, and society considered their height to have a negative social impact.
“With the encouragement of physicians and school nurses, enthusiastic media promotion, and pharmaceutical companies’ advertising, parents sought hormonal interventions,” she writes, adding that, at the time the hormones were considered safe, but long-term adverse effects emerged, including impaired fertility and increased risk of cancers.
“This seems another part of the story of medicine acting to reinforce society’s sex stereotypes, and for some patients it came at disastrous personal cost,” writes Ms. Clayton.
The gender-affirming approach is based on endorsing the adolescent’s stated gender identity with minimal questioning and “that they should be supported to undertake social transition, medical transition, masculinizing chest surgery, and, some also argue, genital surgery,” she writes.
Objectors to this approach pinpoint the “limited and low-quality evidence base for the benefits” but also “the irreversible and long-term adverse impacts of these treatments on fertility and sexual function, as well as on bone, brain, and cardiovascular functioning.”
Current studies of gender-affirming surgeries lack standardization
In their viewpoint, Dr. Agochukwu-Mmonu and colleagues state that use of a CED would not only help provide an evidence base but would also ensure better-informed policy access and coverage decisions to help standardize approaches to gender surgery in the United States.
Currently, they note, “Studies examining the mental health benefit for patients undergoing gender-affirming surgeries include measures that lack standardization, evaluate different interventions (that is, surgeries are rarely done with concurrent hormone administration), include dissimilar patient populations, and use different study designs.”
This difference in study design leads to variation in reported outcomes. Although many studies have shown benefit, others report that patients have unrealistic expectations or experience regret, Dr. Agochukwu-Mmonu and coauthors conclude.
CED provides an option that would enable informed decisions. “It allows the deliberate use of innovative therapies, explicit integration of transgender and nonbinary patient input, and ongoing systematic evaluation aimed to identify specific patient groups who would or would not benefit from their use.”
This leads back to Ms. Clayton’s central question around whether the gender-affirmative approach is a medical advance or dangerous medicine.
“Why are these experimental interventions, with inherent risks and scarce, low-quality evidence for benefits being implemented outside HREC-regulated clinical trial settings?’” she wonders.
Ms. Clayton has declared no conflicts of interest.
A version of this article first appeared on Medscape.com.
Is the gender-affirmative treatment approach an example of “medicine continuing on its progressive march of improving human life” or “a manifestation of dangerous medicine that ... will cause more harm than benefit to vulnerable youths?” wonders an Australian psychiatrist in a newly published letter that addresses the controversial procedure of masculinizing chest surgery – a double mastectomy – in young people with gender dysphoria (GD).
Alison Clayton, MBBS, explores the evidence for masculinizing chest surgery and looks back at examples of “dangerous medicine” in the past century while looking forward, wondering how future medics will retrospectively view gender affirmative treatment, especially so-called “top” or masculinizing chest surgery, which is in actual fact a double mastectomy, in a letter published Nov. 22 in the Archives of Sexual Behavior.
“It is surprising that clinicians and researchers claim chest surgery for GD youth is an evidence-based intervention, rather than acknowledging it is an experimental treatment that requires more rigorous and human research ethics committee [HREC] approved research,” she writes.
“The medical profession needs to consider whether, in its championing of the gender-affirmative approach for GD youth, it is also acting brashly and making mistakes that will negatively impact some young people for the rest of their lives,” she continues.
Ms. Clayton, after many years of experience as a psychiatrist, has recently returned to postgraduate research into the history of 20th-century psychiatry at the School of Historical and Philosophical Studies, University of Melbourne.
Meanwhile, the authors of a viewpoint published online Dec. 1 in JAMA Surgery, agree with Ms. Clayton on the issue of a lack of long-term studies on which to base decisions, particularly when it comes to insurance coverage for gender surgeries in the United States.
Nnenaya Agochukwu-Mmonu, MD, and colleagues recommend use of the coverage with evidence development (CED) approach, which would, they say, provide a “rigorous evidence base for gender-affirming interventions and surgery while simultaneously allowing access and provisional coverage for these services.”
Threefold increase in gender-affirming surgeries in past decade
There has been a threefold rise in the rate of gender-affirming surgeries in the United States in the past decade, which can be attributed to increased recognition of gender dysphoria, decreasing social stigma toward these individuals, greater clinical experience, and expanding insurance coverage, according to Dr. Agochukwu-Mmonu, of the department of urology, NYU School of Medicine, and coauthors.
Ms. Clayton meanwhile notes that of the increasing number of adolescents being referred for treatment for gender dysphoria in the Western world, most were born female and many have “a history of psychiatric illness or neurodevelopmental disorders.”
Many of these youngsters also show a “high demand” for surgical removal of breasts, she adds, noting that this operation is being undertaken as routine treatment in patients as young as 13, with some clinicians arguing that “this surgery is an evidence-based intervention that improves mental health outcomes, and that it is discriminatory for it not to be available.”
She also notes that “chest dysphoria” is “a recently created term meaning discomfort with one’s breasts.” The term “breast” is therefore largely absent in publications talking about this surgery as it “may cause distress for transgender males,” to quote one source, Ms. Clayton says, and “this seems part of a broader pattern of removing this term from clinical language,” according to another article on the subject.
Ms. Clayton also says, “There are only a handful of published studies focusing on the potential benefits of masculinizing chest surgery,” and notes that these mostly report on surgery for individuals younger than 21 years old.
Significant methodological flaws in existing research
One study of 14 postsurgical youth (nine of whom were under 18 years) found that “all reported high aesthetic satisfaction and most self-reported low complication rates and improvement in mood.”
Another cross-sectional retrospective survey looked at 68 postsurgical transmasculine youth (72% of the eligible postsurgical population); 49% had surgery when younger than age 18, with the youngest being age 13 and the oldest age 24. At the time of the survey, only 14% of participants were more than 2 years postsurgery. The postsurgical participants were found to have reduced chest dysphoria (the outcome) compared with a convenience and nonmatched comparison sample of nonsurgical transmasculine youth.
And a 2021 qualitative study of 30 transmale youth – about half of whom had undergone chest surgery – concluded that the postsurgical cohort experienced “tremendous” benefits in chest dysphoria and a range of psychological outcomes.
On this particular study, Ms. Clayton notes that “in my opinion, they did not provide enough detail for the reader to make an informed judgment regarding this latter claim.”
She goes on to discuss genital surgery, sometimes called full gender-affirming surgery (or “bottom surgery”), and says proponents of these operations point out that the main objections to them in minors is to “surgical sterilization, and people get super worked up about that ... it is a barrier we have to overcome, and I think we are going to.”
Ms. Clayton asserts that it seems “this barrier is already being overcome, as it has been reported that in the United States, genital surgery is being undertaken on gender dysphoric minors as young as 15 years old.”
Reflecting on the available evidence, Ms. Clayton highlights the significant methodological flaws that limit the extent to which surgery can be linked to short-term improved mental health outcomes and adds that information on long-term outcomes and rates of regret is unavailable.
She also asserts that the research fails to assess “a role for psychological interventions which could be utilized, as a least-harm intervention, until maturity is reached.”
Historical examples of experimental medicine
Ms. Clayton goes on to draw parallels with experimental medicine performed on homosexuals in the 20th century, highlighting the medical and surgical interventions, which included metrazol convulsive therapy, chemical castration with estrogens, surgical castration, clitoridectomy, brain operations, and aversive electrotherapy.
She also refers to the historical practice of hormonal treatment for “tall girls” and “short boys” between the 1960s and 1980s. Hormones were given to young people who did not have any medical reason underpinning their stature but were distressed, and society considered their height to have a negative social impact.
“With the encouragement of physicians and school nurses, enthusiastic media promotion, and pharmaceutical companies’ advertising, parents sought hormonal interventions,” she writes, adding that, at the time the hormones were considered safe, but long-term adverse effects emerged, including impaired fertility and increased risk of cancers.
“This seems another part of the story of medicine acting to reinforce society’s sex stereotypes, and for some patients it came at disastrous personal cost,” writes Ms. Clayton.
The gender-affirming approach is based on endorsing the adolescent’s stated gender identity with minimal questioning and “that they should be supported to undertake social transition, medical transition, masculinizing chest surgery, and, some also argue, genital surgery,” she writes.
Objectors to this approach pinpoint the “limited and low-quality evidence base for the benefits” but also “the irreversible and long-term adverse impacts of these treatments on fertility and sexual function, as well as on bone, brain, and cardiovascular functioning.”
Current studies of gender-affirming surgeries lack standardization
In their viewpoint, Dr. Agochukwu-Mmonu and colleagues state that use of a CED would not only help provide an evidence base but would also ensure better-informed policy access and coverage decisions to help standardize approaches to gender surgery in the United States.
Currently, they note, “Studies examining the mental health benefit for patients undergoing gender-affirming surgeries include measures that lack standardization, evaluate different interventions (that is, surgeries are rarely done with concurrent hormone administration), include dissimilar patient populations, and use different study designs.”
This difference in study design leads to variation in reported outcomes. Although many studies have shown benefit, others report that patients have unrealistic expectations or experience regret, Dr. Agochukwu-Mmonu and coauthors conclude.
CED provides an option that would enable informed decisions. “It allows the deliberate use of innovative therapies, explicit integration of transgender and nonbinary patient input, and ongoing systematic evaluation aimed to identify specific patient groups who would or would not benefit from their use.”
This leads back to Ms. Clayton’s central question around whether the gender-affirmative approach is a medical advance or dangerous medicine.
“Why are these experimental interventions, with inherent risks and scarce, low-quality evidence for benefits being implemented outside HREC-regulated clinical trial settings?’” she wonders.
Ms. Clayton has declared no conflicts of interest.
A version of this article first appeared on Medscape.com.
FROM JAMA SURGERY
Patient risk, not disease duration, key to timing biologics in IBD
The decision to initiate biologics early in the treatment of Crohn’s disease (CD) and ulcerative colitis (UC) should be based on complication risk, not on the assumption that earlier treatment produces better results, new research suggests.
Results of a meta-analysis of randomized controlled trials show that “the proportional biologic/placebo treatment effect on remission and response to biologics was not influenced by disease duration in UC or CD patients,” the investigators note.
“Patients with Crohn’s disease treated with biologics early on show over 40% remission rate, compared [with] around 30% for those with disease of 20 years or more,” study investigator Shomron Ben-Horin, MD, Sheba Medical Center, Tel Aviv University, Israel, told this news organization.
The rates of remission with both biologics and placebo were higher for patients with short-duration CD compared with patients with disease of longer duration. However, for patients with UC, the remission rates with both biologics and placebo were similar regardless of disease duration.
“Our findings support the use of biologics in patients with Crohn’s disease early after diagnosis, if they are at high risk of disease progression and complications, but not just to achieve better efficacy,” Dr. Ben-Horin said.
The meta-analysis was published online in Gastroenterology.
Getting the timing right
Dr. Ben-Horin led the research with an international group of investigators who assessed individual data from 6,168 patients with CD and 3,227 patients with UC. The patients were participants in 25 placebo-controlled trials.
For patients with CD, the odds ratio of achieving remission with biologics in comparison with placebo was 1.47 (95% confidence interval, 1.01-2.15) for short-duration disease (≤18 months), which was not so different from the odds ratio for longer-duration disease (>18 months) (OR, 1.43; 95% CI, 1.19-1.72).
“These results remained similar when tested for other disease duration cutoffs or when accounting for individual patients’ characteristics, such as whether patients were previously exposed to biologics or not,” said Dr. Ben-Horin.
For patients with UC, the OR for remission with biologics in comparison with placebo was 1.82 (95% CI, 1.12-2.97) for those with short-duration disease and 2.21 (95% CI, 1.79-2.72) for those with long-duration disease.
What the optimal timing is for using biologics for patients with inflammatory bowel disease (IBD), which includes both CD and UC, and whether all patients with these conditions need them are very pertinent questions, said Dr. Ben-Horin.
About a decade ago, the treatment of IBD changed. At that time, patients were initially treated with immunomodulators or steroids; biologics were used only if those treatments failed. More recently, a top-down approach has been followed, in which biologics are brought in at the beginning of the treatment protocol, said Dr. Ben-Horin.
This top-down approach has been widely adopted to prevent complications, such as intestinal strictures, bowel obstruction, or fistulas, which can increase the odds that patients with CD will require surgery, he added.
Although treatment with biologics was more effective when initiated earlier than later, data to support this were limited, prompting the investigators to conduct the current review.
“A substantial fraction of patients with Crohn’s disease may be better off with biologics first if they are at a high risk of complications: for example, smokers, patients with extensive disease, or those with perianal fistula. But this may not be necessarily true for those with a low risk of complications,” said Dr. Ben-Horin.
For patients with UC, “the lack of better efficacy with biologics in short-duration disease forces us to rethink our protocols of an early start of biologics,” he added.
Possible reasons for the early response
The reasons for the higher response to both placebo and biologics for patients with early CD are unknown.
“It may be that there is plasticity in Crohn’s disease early in the course of disease, where the tissue is more amenable to return to normal whether the patient is on placebo or treatment,” said Dr. Ben-Horin.
He suspects that the more likely explanation is that the placebo response is higher in patients with CD of short duration.
“When we looked at levels of C-reactive protein, this was reduced by biologics at similar magnitude in early- and late-disease patients,” Dr. Ben-Horin said. He noted that more studies are needed to better understand disease dynamics with these conditions.
Commenting on the findings, Stephen B. Hanauer, MD, from Northwestern University Feinberg School of Medicine, Chicago, noted that they “absolutely support earlier intervention for moderate-severe Crohn’s disease from diagnosis, rather than waiting for transmural progression that will make disease more refractory to any mechanism of action.”
“Unfortunately, the average duration of disease in biologic trials is often close to 10 years, which implies a more refractory population,” Dr. Hanauer said.
“Furthermore, in the United States, clinicians and patients are hampered by inability to gain third-party authorization for biologics or advanced oral agents, such as JAK inhibitors or S1P modulators, until failure of so-called conventional agents despite labeling indication for moderate-severe disease,” he added.
Dr. Ben-Horin has received consultancy and/or advisory board fees from AbbVie, Novartis, Schering-Plough, Janssen, Celltrion, GSK, Pfizer, Galmed, and Takeda and research support from AbbVie, Janssen, Celltrion, Galmed, and Takeda. Dr. Hanauer is a consultant and speaker for AbbVie, Janssen, and Takeda.
A version of this article first appeared on Medscape.com.
The decision to initiate biologics early in the treatment of Crohn’s disease (CD) and ulcerative colitis (UC) should be based on complication risk, not on the assumption that earlier treatment produces better results, new research suggests.
Results of a meta-analysis of randomized controlled trials show that “the proportional biologic/placebo treatment effect on remission and response to biologics was not influenced by disease duration in UC or CD patients,” the investigators note.
“Patients with Crohn’s disease treated with biologics early on show over 40% remission rate, compared [with] around 30% for those with disease of 20 years or more,” study investigator Shomron Ben-Horin, MD, Sheba Medical Center, Tel Aviv University, Israel, told this news organization.
The rates of remission with both biologics and placebo were higher for patients with short-duration CD compared with patients with disease of longer duration. However, for patients with UC, the remission rates with both biologics and placebo were similar regardless of disease duration.
“Our findings support the use of biologics in patients with Crohn’s disease early after diagnosis, if they are at high risk of disease progression and complications, but not just to achieve better efficacy,” Dr. Ben-Horin said.
The meta-analysis was published online in Gastroenterology.
Getting the timing right
Dr. Ben-Horin led the research with an international group of investigators who assessed individual data from 6,168 patients with CD and 3,227 patients with UC. The patients were participants in 25 placebo-controlled trials.
For patients with CD, the odds ratio of achieving remission with biologics in comparison with placebo was 1.47 (95% confidence interval, 1.01-2.15) for short-duration disease (≤18 months), which was not so different from the odds ratio for longer-duration disease (>18 months) (OR, 1.43; 95% CI, 1.19-1.72).
“These results remained similar when tested for other disease duration cutoffs or when accounting for individual patients’ characteristics, such as whether patients were previously exposed to biologics or not,” said Dr. Ben-Horin.
For patients with UC, the OR for remission with biologics in comparison with placebo was 1.82 (95% CI, 1.12-2.97) for those with short-duration disease and 2.21 (95% CI, 1.79-2.72) for those with long-duration disease.
What the optimal timing is for using biologics for patients with inflammatory bowel disease (IBD), which includes both CD and UC, and whether all patients with these conditions need them are very pertinent questions, said Dr. Ben-Horin.
About a decade ago, the treatment of IBD changed. At that time, patients were initially treated with immunomodulators or steroids; biologics were used only if those treatments failed. More recently, a top-down approach has been followed, in which biologics are brought in at the beginning of the treatment protocol, said Dr. Ben-Horin.
This top-down approach has been widely adopted to prevent complications, such as intestinal strictures, bowel obstruction, or fistulas, which can increase the odds that patients with CD will require surgery, he added.
Although treatment with biologics was more effective when initiated earlier than later, data to support this were limited, prompting the investigators to conduct the current review.
“A substantial fraction of patients with Crohn’s disease may be better off with biologics first if they are at a high risk of complications: for example, smokers, patients with extensive disease, or those with perianal fistula. But this may not be necessarily true for those with a low risk of complications,” said Dr. Ben-Horin.
For patients with UC, “the lack of better efficacy with biologics in short-duration disease forces us to rethink our protocols of an early start of biologics,” he added.
Possible reasons for the early response
The reasons for the higher response to both placebo and biologics for patients with early CD are unknown.
“It may be that there is plasticity in Crohn’s disease early in the course of disease, where the tissue is more amenable to return to normal whether the patient is on placebo or treatment,” said Dr. Ben-Horin.
He suspects that the more likely explanation is that the placebo response is higher in patients with CD of short duration.
“When we looked at levels of C-reactive protein, this was reduced by biologics at similar magnitude in early- and late-disease patients,” Dr. Ben-Horin said. He noted that more studies are needed to better understand disease dynamics with these conditions.
Commenting on the findings, Stephen B. Hanauer, MD, from Northwestern University Feinberg School of Medicine, Chicago, noted that they “absolutely support earlier intervention for moderate-severe Crohn’s disease from diagnosis, rather than waiting for transmural progression that will make disease more refractory to any mechanism of action.”
“Unfortunately, the average duration of disease in biologic trials is often close to 10 years, which implies a more refractory population,” Dr. Hanauer said.
“Furthermore, in the United States, clinicians and patients are hampered by inability to gain third-party authorization for biologics or advanced oral agents, such as JAK inhibitors or S1P modulators, until failure of so-called conventional agents despite labeling indication for moderate-severe disease,” he added.
Dr. Ben-Horin has received consultancy and/or advisory board fees from AbbVie, Novartis, Schering-Plough, Janssen, Celltrion, GSK, Pfizer, Galmed, and Takeda and research support from AbbVie, Janssen, Celltrion, Galmed, and Takeda. Dr. Hanauer is a consultant and speaker for AbbVie, Janssen, and Takeda.
A version of this article first appeared on Medscape.com.
The decision to initiate biologics early in the treatment of Crohn’s disease (CD) and ulcerative colitis (UC) should be based on complication risk, not on the assumption that earlier treatment produces better results, new research suggests.
Results of a meta-analysis of randomized controlled trials show that “the proportional biologic/placebo treatment effect on remission and response to biologics was not influenced by disease duration in UC or CD patients,” the investigators note.
“Patients with Crohn’s disease treated with biologics early on show over 40% remission rate, compared [with] around 30% for those with disease of 20 years or more,” study investigator Shomron Ben-Horin, MD, Sheba Medical Center, Tel Aviv University, Israel, told this news organization.
The rates of remission with both biologics and placebo were higher for patients with short-duration CD compared with patients with disease of longer duration. However, for patients with UC, the remission rates with both biologics and placebo were similar regardless of disease duration.
“Our findings support the use of biologics in patients with Crohn’s disease early after diagnosis, if they are at high risk of disease progression and complications, but not just to achieve better efficacy,” Dr. Ben-Horin said.
The meta-analysis was published online in Gastroenterology.
Getting the timing right
Dr. Ben-Horin led the research with an international group of investigators who assessed individual data from 6,168 patients with CD and 3,227 patients with UC. The patients were participants in 25 placebo-controlled trials.
For patients with CD, the odds ratio of achieving remission with biologics in comparison with placebo was 1.47 (95% confidence interval, 1.01-2.15) for short-duration disease (≤18 months), which was not so different from the odds ratio for longer-duration disease (>18 months) (OR, 1.43; 95% CI, 1.19-1.72).
“These results remained similar when tested for other disease duration cutoffs or when accounting for individual patients’ characteristics, such as whether patients were previously exposed to biologics or not,” said Dr. Ben-Horin.
For patients with UC, the OR for remission with biologics in comparison with placebo was 1.82 (95% CI, 1.12-2.97) for those with short-duration disease and 2.21 (95% CI, 1.79-2.72) for those with long-duration disease.
What the optimal timing is for using biologics for patients with inflammatory bowel disease (IBD), which includes both CD and UC, and whether all patients with these conditions need them are very pertinent questions, said Dr. Ben-Horin.
About a decade ago, the treatment of IBD changed. At that time, patients were initially treated with immunomodulators or steroids; biologics were used only if those treatments failed. More recently, a top-down approach has been followed, in which biologics are brought in at the beginning of the treatment protocol, said Dr. Ben-Horin.
This top-down approach has been widely adopted to prevent complications, such as intestinal strictures, bowel obstruction, or fistulas, which can increase the odds that patients with CD will require surgery, he added.
Although treatment with biologics was more effective when initiated earlier than later, data to support this were limited, prompting the investigators to conduct the current review.
“A substantial fraction of patients with Crohn’s disease may be better off with biologics first if they are at a high risk of complications: for example, smokers, patients with extensive disease, or those with perianal fistula. But this may not be necessarily true for those with a low risk of complications,” said Dr. Ben-Horin.
For patients with UC, “the lack of better efficacy with biologics in short-duration disease forces us to rethink our protocols of an early start of biologics,” he added.
Possible reasons for the early response
The reasons for the higher response to both placebo and biologics for patients with early CD are unknown.
“It may be that there is plasticity in Crohn’s disease early in the course of disease, where the tissue is more amenable to return to normal whether the patient is on placebo or treatment,” said Dr. Ben-Horin.
He suspects that the more likely explanation is that the placebo response is higher in patients with CD of short duration.
“When we looked at levels of C-reactive protein, this was reduced by biologics at similar magnitude in early- and late-disease patients,” Dr. Ben-Horin said. He noted that more studies are needed to better understand disease dynamics with these conditions.
Commenting on the findings, Stephen B. Hanauer, MD, from Northwestern University Feinberg School of Medicine, Chicago, noted that they “absolutely support earlier intervention for moderate-severe Crohn’s disease from diagnosis, rather than waiting for transmural progression that will make disease more refractory to any mechanism of action.”
“Unfortunately, the average duration of disease in biologic trials is often close to 10 years, which implies a more refractory population,” Dr. Hanauer said.
“Furthermore, in the United States, clinicians and patients are hampered by inability to gain third-party authorization for biologics or advanced oral agents, such as JAK inhibitors or S1P modulators, until failure of so-called conventional agents despite labeling indication for moderate-severe disease,” he added.
Dr. Ben-Horin has received consultancy and/or advisory board fees from AbbVie, Novartis, Schering-Plough, Janssen, Celltrion, GSK, Pfizer, Galmed, and Takeda and research support from AbbVie, Janssen, Celltrion, Galmed, and Takeda. Dr. Hanauer is a consultant and speaker for AbbVie, Janssen, and Takeda.
A version of this article first appeared on Medscape.com.
Newly discovered vascular barrier in the brain may explain IBD-related anxiety, depression
A newly discovered vascular brain barrier that blocks the passage of inflammatory molecules triggered by gut bacteria may be why patients with inflammatory bowel disease (IBD) are at increased risk for certain mental health disorders, including anxiety and depression, early research suggests.
The discovery, which was based on a preclinical model, could lead to new therapeutic targets that could have applications for both gastrointestinal and psychiatric conditions, investigators note.
The research team, which was led by immunologist Maria Rescigno, PhD, and neuroscientist Simona Lodato, PhD, both from Humanitas University, Milan, notes that the barrier resides in the choroid plexus, a region of the brain that is involved in filtering cerebrospinal fluid. The researchers found that the region closes in response to inflammatory molecules produced in reaction to the presence of intestinal bacteria in patients with gut disorders.
Dr. Lodato said in an interview that the brain’s choroid plexus vascular barrier, along with another barrier between the gut and liver, known as the gut vascular barrier, appear to control the movement of molecules along the gut-brain axis.
“We show that in addition to the epithelial barrier in the choroid plexus, there is a functional vascular barrier that only becomes evident in blocking entry of various inflammatory molecules under conditions of systemic inflammation,” Dr. Lodato said.
“This interruption of the gut-brain interaction has developed to protect the brain from inflammation. Why this happens is not yet known, but it is likely to prevent epileptic seizures and imbalanced neuronal activity,” added Dr. Rescigno.
The study was published online October 22 in Science.
The gut a root cause of mental illness?
Nearly 40% of patients with IBD also experience depression and anxiety. It was once thought that these conditions arose because of patients’ difficulties in coping with their disease, said Dr. Rescigno.
“People with these disorders conventionally thought to be caused by an imbalance in the brain may actually find the root cause is located in the intestine. This is the first time these symptoms have been associated with the choroid plexus vascular brain barrier and its closure,” she noted.
Dr. Rescigno added that subtle, rather than overt, inflammation may be all that’s required for closure of the choroid plexus and the subsequent effects on mental health.
In 2015, Dr. Rescigno’s group first described the gut vascular barrier that protects the systemic circulation from gut bacteria or associated bacteria-derived molecules. During intestinal inflammation, such as occurs in IBD, this barrier is compromised and becomes more permeable. This allows microbes to pass across the epithelium of the gut barrier and enter the systemic circulation, including the liver and spleen, explained Dr. Rescigno.
Dr. Rescigno and Dr. Lodato then explored whether this systemic inflammatory condition was connected to the brain along a gut-brain axis and found that it was.
The researchers tested the hypothesis that central nervous system symptoms may be due to vascular changes at the interface between the gut or the brain and elsewhere in the body.
“We set out to test whether opening of the gut vascular barrier would allow gut bacteria to trigger the release of inflammatory molecules that spread to more distant areas, possibly leading to a deficiency of certain nutrients and precipitating mental disorders,” they said.
An experimental preclinical model of the choroid plexus vascular barrier closure led to anxiety-like behavior, as well as short-term memory loss. That this behavior occurred independently of inflammation suggested that it was likely a response to closure itself, they note.
In the noninflammatory state, the epithelium of the choroid plexus filters molecules. Those that are ≤70 kDa are allowed to pass through to the brain. However, the investigators found that during systemic inflammation, this filtration stops, and the blood capillaries of the choroid plexus prevent entry of inflammatory molecules such as cytokines.
Dr. Lodato speculated that when the vascular barrier of the choroid plexus shuts off during the systemic inflammatory state, it responds by bathing the brain in cerebrospinal fluid.
“When the choroid plexus closes, like a door slamming shut, then communication between the brain and the rest of the body is halted. This means that the brain is deprived of certain nutrients and other beneficial molecules that usually enter via the cerebrospinal fluid or enriched of potentially dangerous ones, as drainage could also be affected,” she said.
If confirmed in further studies, these results may open the way to new interventions.
‘A significant leap forward’
Commenting on the findings, David T. Rubin, MD, professor of medicine at the University of Chicago, noted that the study’s results represent “a significant leap forward” and that it highlights “another important cost to uncontrolled gut inflammation that is the potential for worsened mental health disorders.”
Dr. Rubin, whose research involves measuring metabolites of the dietary amino acid tryptophan, including melatonin and serotonin, in patients with IBD, added that the findings offer a possible explanation for the association of both Crohn’s disease and ulcerative colitis with anxiety and depressive disorders.
“There was a belief that the association was in the opposite direction, that the mental health disorder was causing or worsening the gut inflammation, but this has been disavowed,” Dr. Rubin said.
“Most recently, the recognition that the major sources of serotonin and other metabolites of tryptophan that come from the gut microbiome has led to the hypothesis that the inflamed bowel and dysbiotic gut biome may in fact be driving the mental health disorders due to the effect of neurotransmitter imbalance,” he added. Dr. Rubin also suggested that the shutdown of the choroid plexus vascular barrier may contribute to this imbalance but that this needs additional study.
“This further supports my ongoing contention that the gut really is the center of the universe,” said Dr. Rubin.
Also commenting on the findings, Miguel Rigueiro, MD, professor in the department of medicine in the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University, Cleveland, said, “There’s an implication that anxiety and depression and other behavioral health disorders may be explained by this mechanism. If that is the case, there may be a way to target medications against the choroid plexus and potentially treat depression or anxiety.”
This prospect was echoed by Dr. Rubin, who said, “The clinical implication is that treatment of gut inflammation may restore a balance to the neurotransmitters and resolve anxiety or depressive disorders.”
To identify new therapeutic targets, investigators will study the regions and circuits of the brain that are more susceptible to this closure of the choroid plexus, said Dr. Lodato.
“If these regions are associated with depression or other psychosocial disorders, then this new understanding around the choroid plexus vascular barrier might eventually have implications for helping treat such disorders,” she noted.
Reflecting a general shift from a brain-centric view of some psychosocial disorders to an intestinal-centric one, Dr. Lodato added, “The brain cannot be considered in isolation. It is part of a much larger body, and we need to think this way.”
Dr. Rescigno, Dr. Lodato, and Dr. Rubin report no relevant financial relationships. Dr. Rigueiro has served on advisory boards and as consultant for AbbVie, Janssen, UCB, Takeda, Pfizer, Miraca Labs, Amgen, Celgene, Seres, Allergan, Genentech, Gilead, Salix, Prometheus, Lilly, TARGET Pharma Solutions, ALFASIGMA, SpA, and Bristol-Meyer Squibb.
A version of this article first appeared on Medscape.com.
A newly discovered vascular brain barrier that blocks the passage of inflammatory molecules triggered by gut bacteria may be why patients with inflammatory bowel disease (IBD) are at increased risk for certain mental health disorders, including anxiety and depression, early research suggests.
The discovery, which was based on a preclinical model, could lead to new therapeutic targets that could have applications for both gastrointestinal and psychiatric conditions, investigators note.
The research team, which was led by immunologist Maria Rescigno, PhD, and neuroscientist Simona Lodato, PhD, both from Humanitas University, Milan, notes that the barrier resides in the choroid plexus, a region of the brain that is involved in filtering cerebrospinal fluid. The researchers found that the region closes in response to inflammatory molecules produced in reaction to the presence of intestinal bacteria in patients with gut disorders.
Dr. Lodato said in an interview that the brain’s choroid plexus vascular barrier, along with another barrier between the gut and liver, known as the gut vascular barrier, appear to control the movement of molecules along the gut-brain axis.
“We show that in addition to the epithelial barrier in the choroid plexus, there is a functional vascular barrier that only becomes evident in blocking entry of various inflammatory molecules under conditions of systemic inflammation,” Dr. Lodato said.
“This interruption of the gut-brain interaction has developed to protect the brain from inflammation. Why this happens is not yet known, but it is likely to prevent epileptic seizures and imbalanced neuronal activity,” added Dr. Rescigno.
The study was published online October 22 in Science.
The gut a root cause of mental illness?
Nearly 40% of patients with IBD also experience depression and anxiety. It was once thought that these conditions arose because of patients’ difficulties in coping with their disease, said Dr. Rescigno.
“People with these disorders conventionally thought to be caused by an imbalance in the brain may actually find the root cause is located in the intestine. This is the first time these symptoms have been associated with the choroid plexus vascular brain barrier and its closure,” she noted.
Dr. Rescigno added that subtle, rather than overt, inflammation may be all that’s required for closure of the choroid plexus and the subsequent effects on mental health.
In 2015, Dr. Rescigno’s group first described the gut vascular barrier that protects the systemic circulation from gut bacteria or associated bacteria-derived molecules. During intestinal inflammation, such as occurs in IBD, this barrier is compromised and becomes more permeable. This allows microbes to pass across the epithelium of the gut barrier and enter the systemic circulation, including the liver and spleen, explained Dr. Rescigno.
Dr. Rescigno and Dr. Lodato then explored whether this systemic inflammatory condition was connected to the brain along a gut-brain axis and found that it was.
The researchers tested the hypothesis that central nervous system symptoms may be due to vascular changes at the interface between the gut or the brain and elsewhere in the body.
“We set out to test whether opening of the gut vascular barrier would allow gut bacteria to trigger the release of inflammatory molecules that spread to more distant areas, possibly leading to a deficiency of certain nutrients and precipitating mental disorders,” they said.
An experimental preclinical model of the choroid plexus vascular barrier closure led to anxiety-like behavior, as well as short-term memory loss. That this behavior occurred independently of inflammation suggested that it was likely a response to closure itself, they note.
In the noninflammatory state, the epithelium of the choroid plexus filters molecules. Those that are ≤70 kDa are allowed to pass through to the brain. However, the investigators found that during systemic inflammation, this filtration stops, and the blood capillaries of the choroid plexus prevent entry of inflammatory molecules such as cytokines.
Dr. Lodato speculated that when the vascular barrier of the choroid plexus shuts off during the systemic inflammatory state, it responds by bathing the brain in cerebrospinal fluid.
“When the choroid plexus closes, like a door slamming shut, then communication between the brain and the rest of the body is halted. This means that the brain is deprived of certain nutrients and other beneficial molecules that usually enter via the cerebrospinal fluid or enriched of potentially dangerous ones, as drainage could also be affected,” she said.
If confirmed in further studies, these results may open the way to new interventions.
‘A significant leap forward’
Commenting on the findings, David T. Rubin, MD, professor of medicine at the University of Chicago, noted that the study’s results represent “a significant leap forward” and that it highlights “another important cost to uncontrolled gut inflammation that is the potential for worsened mental health disorders.”
Dr. Rubin, whose research involves measuring metabolites of the dietary amino acid tryptophan, including melatonin and serotonin, in patients with IBD, added that the findings offer a possible explanation for the association of both Crohn’s disease and ulcerative colitis with anxiety and depressive disorders.
“There was a belief that the association was in the opposite direction, that the mental health disorder was causing or worsening the gut inflammation, but this has been disavowed,” Dr. Rubin said.
“Most recently, the recognition that the major sources of serotonin and other metabolites of tryptophan that come from the gut microbiome has led to the hypothesis that the inflamed bowel and dysbiotic gut biome may in fact be driving the mental health disorders due to the effect of neurotransmitter imbalance,” he added. Dr. Rubin also suggested that the shutdown of the choroid plexus vascular barrier may contribute to this imbalance but that this needs additional study.
“This further supports my ongoing contention that the gut really is the center of the universe,” said Dr. Rubin.
Also commenting on the findings, Miguel Rigueiro, MD, professor in the department of medicine in the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University, Cleveland, said, “There’s an implication that anxiety and depression and other behavioral health disorders may be explained by this mechanism. If that is the case, there may be a way to target medications against the choroid plexus and potentially treat depression or anxiety.”
This prospect was echoed by Dr. Rubin, who said, “The clinical implication is that treatment of gut inflammation may restore a balance to the neurotransmitters and resolve anxiety or depressive disorders.”
To identify new therapeutic targets, investigators will study the regions and circuits of the brain that are more susceptible to this closure of the choroid plexus, said Dr. Lodato.
“If these regions are associated with depression or other psychosocial disorders, then this new understanding around the choroid plexus vascular barrier might eventually have implications for helping treat such disorders,” she noted.
Reflecting a general shift from a brain-centric view of some psychosocial disorders to an intestinal-centric one, Dr. Lodato added, “The brain cannot be considered in isolation. It is part of a much larger body, and we need to think this way.”
Dr. Rescigno, Dr. Lodato, and Dr. Rubin report no relevant financial relationships. Dr. Rigueiro has served on advisory boards and as consultant for AbbVie, Janssen, UCB, Takeda, Pfizer, Miraca Labs, Amgen, Celgene, Seres, Allergan, Genentech, Gilead, Salix, Prometheus, Lilly, TARGET Pharma Solutions, ALFASIGMA, SpA, and Bristol-Meyer Squibb.
A version of this article first appeared on Medscape.com.
A newly discovered vascular brain barrier that blocks the passage of inflammatory molecules triggered by gut bacteria may be why patients with inflammatory bowel disease (IBD) are at increased risk for certain mental health disorders, including anxiety and depression, early research suggests.
The discovery, which was based on a preclinical model, could lead to new therapeutic targets that could have applications for both gastrointestinal and psychiatric conditions, investigators note.
The research team, which was led by immunologist Maria Rescigno, PhD, and neuroscientist Simona Lodato, PhD, both from Humanitas University, Milan, notes that the barrier resides in the choroid plexus, a region of the brain that is involved in filtering cerebrospinal fluid. The researchers found that the region closes in response to inflammatory molecules produced in reaction to the presence of intestinal bacteria in patients with gut disorders.
Dr. Lodato said in an interview that the brain’s choroid plexus vascular barrier, along with another barrier between the gut and liver, known as the gut vascular barrier, appear to control the movement of molecules along the gut-brain axis.
“We show that in addition to the epithelial barrier in the choroid plexus, there is a functional vascular barrier that only becomes evident in blocking entry of various inflammatory molecules under conditions of systemic inflammation,” Dr. Lodato said.
“This interruption of the gut-brain interaction has developed to protect the brain from inflammation. Why this happens is not yet known, but it is likely to prevent epileptic seizures and imbalanced neuronal activity,” added Dr. Rescigno.
The study was published online October 22 in Science.
The gut a root cause of mental illness?
Nearly 40% of patients with IBD also experience depression and anxiety. It was once thought that these conditions arose because of patients’ difficulties in coping with their disease, said Dr. Rescigno.
“People with these disorders conventionally thought to be caused by an imbalance in the brain may actually find the root cause is located in the intestine. This is the first time these symptoms have been associated with the choroid plexus vascular brain barrier and its closure,” she noted.
Dr. Rescigno added that subtle, rather than overt, inflammation may be all that’s required for closure of the choroid plexus and the subsequent effects on mental health.
In 2015, Dr. Rescigno’s group first described the gut vascular barrier that protects the systemic circulation from gut bacteria or associated bacteria-derived molecules. During intestinal inflammation, such as occurs in IBD, this barrier is compromised and becomes more permeable. This allows microbes to pass across the epithelium of the gut barrier and enter the systemic circulation, including the liver and spleen, explained Dr. Rescigno.
Dr. Rescigno and Dr. Lodato then explored whether this systemic inflammatory condition was connected to the brain along a gut-brain axis and found that it was.
The researchers tested the hypothesis that central nervous system symptoms may be due to vascular changes at the interface between the gut or the brain and elsewhere in the body.
“We set out to test whether opening of the gut vascular barrier would allow gut bacteria to trigger the release of inflammatory molecules that spread to more distant areas, possibly leading to a deficiency of certain nutrients and precipitating mental disorders,” they said.
An experimental preclinical model of the choroid plexus vascular barrier closure led to anxiety-like behavior, as well as short-term memory loss. That this behavior occurred independently of inflammation suggested that it was likely a response to closure itself, they note.
In the noninflammatory state, the epithelium of the choroid plexus filters molecules. Those that are ≤70 kDa are allowed to pass through to the brain. However, the investigators found that during systemic inflammation, this filtration stops, and the blood capillaries of the choroid plexus prevent entry of inflammatory molecules such as cytokines.
Dr. Lodato speculated that when the vascular barrier of the choroid plexus shuts off during the systemic inflammatory state, it responds by bathing the brain in cerebrospinal fluid.
“When the choroid plexus closes, like a door slamming shut, then communication between the brain and the rest of the body is halted. This means that the brain is deprived of certain nutrients and other beneficial molecules that usually enter via the cerebrospinal fluid or enriched of potentially dangerous ones, as drainage could also be affected,” she said.
If confirmed in further studies, these results may open the way to new interventions.
‘A significant leap forward’
Commenting on the findings, David T. Rubin, MD, professor of medicine at the University of Chicago, noted that the study’s results represent “a significant leap forward” and that it highlights “another important cost to uncontrolled gut inflammation that is the potential for worsened mental health disorders.”
Dr. Rubin, whose research involves measuring metabolites of the dietary amino acid tryptophan, including melatonin and serotonin, in patients with IBD, added that the findings offer a possible explanation for the association of both Crohn’s disease and ulcerative colitis with anxiety and depressive disorders.
“There was a belief that the association was in the opposite direction, that the mental health disorder was causing or worsening the gut inflammation, but this has been disavowed,” Dr. Rubin said.
“Most recently, the recognition that the major sources of serotonin and other metabolites of tryptophan that come from the gut microbiome has led to the hypothesis that the inflamed bowel and dysbiotic gut biome may in fact be driving the mental health disorders due to the effect of neurotransmitter imbalance,” he added. Dr. Rubin also suggested that the shutdown of the choroid plexus vascular barrier may contribute to this imbalance but that this needs additional study.
“This further supports my ongoing contention that the gut really is the center of the universe,” said Dr. Rubin.
Also commenting on the findings, Miguel Rigueiro, MD, professor in the department of medicine in the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University, Cleveland, said, “There’s an implication that anxiety and depression and other behavioral health disorders may be explained by this mechanism. If that is the case, there may be a way to target medications against the choroid plexus and potentially treat depression or anxiety.”
This prospect was echoed by Dr. Rubin, who said, “The clinical implication is that treatment of gut inflammation may restore a balance to the neurotransmitters and resolve anxiety or depressive disorders.”
To identify new therapeutic targets, investigators will study the regions and circuits of the brain that are more susceptible to this closure of the choroid plexus, said Dr. Lodato.
“If these regions are associated with depression or other psychosocial disorders, then this new understanding around the choroid plexus vascular barrier might eventually have implications for helping treat such disorders,” she noted.
Reflecting a general shift from a brain-centric view of some psychosocial disorders to an intestinal-centric one, Dr. Lodato added, “The brain cannot be considered in isolation. It is part of a much larger body, and we need to think this way.”
Dr. Rescigno, Dr. Lodato, and Dr. Rubin report no relevant financial relationships. Dr. Rigueiro has served on advisory boards and as consultant for AbbVie, Janssen, UCB, Takeda, Pfizer, Miraca Labs, Amgen, Celgene, Seres, Allergan, Genentech, Gilead, Salix, Prometheus, Lilly, TARGET Pharma Solutions, ALFASIGMA, SpA, and Bristol-Meyer Squibb.
A version of this article first appeared on Medscape.com.
FROM SCIENCE
Detransitioners received poor evaluation when transitioning
Over half of people who believed they were transgender, transitioned to the opposite sex, but then regretted it and transitioned back – known as detransitioners – felt they did not receive adequate evaluation from a doctor or mental health professional before starting transition, new research indicates.
In what is thought to be the first study to ask whether detransitioners informed their original clinicians of their regret at transitioning, only 24 of the 100 surveyed said they had done so.
This strongly suggests that records on detransition may understate the real numbers, said Lisa Littman, MD, MPH, president of The Institute for Comprehensive Gender Dysphoria Research (ICGDR), who is the sole author of the study, published in Archives of Sexual Behavior.
She stressed that the findings illustrate the complexity surrounding gender dysphoria. “We need to recognize that there are many different types of experiences around gender dysphoria, transition, and detransition,” she told this news organization.
She said there is some resistance among certain health care professionals, and in society in general, to the idea that transitioning is not always successful.
‘We need to understand why this is happening’
“Detransition exists and we need to understand why this is happening,” Dr. Littman emphasized.
She observed that some supporters of “rapid transition” do not want to accept that transitioning helps some individuals but harms others.
“In the end, our goals should be providing the right treatment for the right patient, and without a thorough evaluation, clinicians are at serious risk of giving patients the wrong treatment,” she urged.
She noted that, despite some individuals feeling better after transition, these people still felt inclined to detransition because of discrimination and pressure.
“Individuals should not be pressured to detransition, nor should they be pressured to transition. Both types of pressure were reported by respondents.”
The recently recognized shift from mostly natal males to natal females seeking to transition was borne out by her study data, with the proportion of natal girls who detransitioned at 69%.
‘Shedding light’ on often ignored population
Asked to comment on the study, Laura Edwards-Leeper, PhD, a clinical psychologist from Beaverton, Ore., who specializes in gender-diverse and transgender children, welcomed Dr. Littman’s study.
It is, said Dr. Edwards-Leeper, a “critical preliminary step toward shedding light on this often-ignored and dismissed population of individuals who deserve support, compassion, and sometimes medical intervention from health care providers.”
She added that multiple online reports attest to detransitioners feeling they had not received adequate evaluation prior to medically transitioning, as well as many who expressed feeling too ashamed or angry to return to their same clinicians to detransition.
“Littman’s study provides quantitative support for both of these reported experiences, further emphasizing the importance of the field taking a closer look at the processes currently in place for those experiencing gender dysphoria,” said Dr. Edwards-Leeper.
And Miroslav L. Djordjevic, MD, PhD, professor of surgery/urology, University of Belgrade (Serbia), who is a specialist in urogenital reconstructive surgery and has performed over 2,000 gender-reassignment surgeries in transgender individuals, has recently seen many cases of regret after such surgeries, with requests for reversal operations.
“Despite the fact that medical detransition is relatively safe and without severe consequences, surgical detransition presents one of the most difficult issues in transgender medicine,” Dr. Djordjevic told this news organization.
Commending Dr. Littman on her study, he drew attention to some of the bioethical questions that arise relating to those who detransition.
“I ask what happened in the period before medical transitioning? Was there proper psychological care during medical transitioning? Who confirmed their desire for detransition – the same professionals who did the transition?” or someone else, he continued. “And who accepted these individuals for gender-affirming surgery and what were the criteria for this decision?”
Substantial study of reasons for both transitioning and detransitioning
In her article, Dr. Littman describes a 100-strong population of individuals (66 Americans, 9 British, 9 Canadian, 4 Australians, and 12 from “other” nations), ranging in age from 18 years to over 60 years with a mean age of 29.2 years, who had experienced gender dysphoria, chosen to undergo medical and/or surgical transition, and then detransitioned by discontinuing medications, having reversal surgery, or both.
Participants completed a 115-question survey providing data including age at first experience of gender dysphoria, when participants first sought transitioning care and from whom, and whether they felt pressured to do so. Friendship group dynamics were also explored.
Various narratives of participants’ transitioning-detransitioning experiences were gathered and grouped, for example, those related to discrimination pressures, experiences of trauma or mental health conditions prior to transition, and reports of internalized homophobia.
Dr. Edwards-Leeper observed that the study offers a more extensive assessment of reasons for detransitioning than any other prior research in the field, which has been sparse.
A survey published in April found that detransitioners report significant unmet medical and psychological needs, and a lack of compassion and help from medical and mental health practitioners.
But another 2021 study concluded most detransitioners only reverted to their birth sex because of societal or family pressure, discrimination, or shift to a nonbinary identity.
“However, [Dr.] Littman’s study found that only a small percentage actually detransitioned for that reason [23%], whereas the majority detransitioned because of a change in how the individual understood being a male or female, resulting in becoming comfortable in their assigned gender [60%],” noted Dr. Edwards-Leeper.
Reasons for detransitioning
Asked to expand upon the motives for detransition identified in her study, Dr. Littman told this news organization: “We found remarkable breadth in the reasons given for detransitioning.”
“I believe that we were able to capture the diversity of experiences around detransition because we reached out to communities that were strongly ‘protransition’ – like the World Professional Association for Transgender Health – and communities where individuals might be more skeptical about transition being universally beneficial, like detransition forums,” she said.
Speaking to the complexity of the experiences, 87% selected more than one reason for detransitioning.
The most common reason (60%) was becoming more comfortable identifying with their birth sex, followed by having concerns about potential medical complications from transitioning (49.0%).
Regarding those who became more comfortable with their natal sex, Dr. Littman noted that the finding adds “further support that gender dysphoria is not always permanent.”
She added that, “because most gender-dysphoric youth who are allowed to go through puberty grow up to be lesbian, gay, or bisexual (LGB) nontransgender adults, intervening too soon with medical treatments risks derailing their development as LGB individuals.”
Internalized homophobia or difficulty accepting themselves as lesbian, gay, or bisexual was reported by 23% of participants as a reason for transition and subsequent detransition.
“For these people, transitioning could be interpreted as an attempt to escape the reality of being same-sex attracted and detransitioning was part of accepting themselves as homosexual or bisexual,” explained Dr. Littman.
“Exploring their distress and discomfort around sexual orientation issues may have been more helpful to them than medical and surgical transition or at least an important part of exploration,” she added in the article.
Societal pressure, friends, and social media also play a role
The latest first-hand reports also support prior work by Dr. Littman when she first identified the concept she termed rapid-onset gender dysphoria (ROGD) to describe a sudden transgender identification, usually in the early teenage years, and with no prior indication of any gender questioning.
ROGD, Dr. Littman believes, is strongly related to psychosocial factors, such as trauma, mental health problems, or social influence contributing to the development of gender dysphoria.
The current study found that 58% of respondents expressed the belief that the cause of their gender dysphoria was something specific, such as trauma, abuse, or a mental health condition, with respondents suggesting that transitioning prevented, or delayed, them from addressing their underlying mental health conditions.
One participant is quoted as saying: “I was deeply uncomfortable with my secondary sex characteristics, which I now understand was a result of childhood trauma and associating my secondary sex characteristics with those events.”
Reflecting on their previous identification as transgender, more than a third of respondents reported that someone else told them their feelings meant they were transgender, and they believed them.
“This speaks to the effect social influence can have on people’s interpretation of their own feelings and their development of a transgender identity,” Dr. Littman remarked.
“Participants also listed several social media sources that encouraged them to believe that transitioning would help them,” she added.
Several friendship group dynamics suggestive of social influence were reported by a subset of respondents, including the fact that their friendship groups mocked people who were not transgender and their popularity increased when they announced they were going to transition.
Pendulum has swung too far the other way
Natal females, who in recent years have made up most referrals, were younger than natal males when they sought transition and decided to detransition; and they stayed “transitioned” for a shorter period than natal males. They were also more likely to have experienced a trauma less than 1 year before the onset of gender dysphoria and were more likely to have felt pressured to transition.
“Because the females in the study transitioned more recently than the males, they may have experienced a culture where there is more of a ‘push’ to transition,” Dr. Littman pointed out.
She added that, “20 years ago, gender-dysphoric patients were most likely to be underdiagnosed and undertreated. Now, the pendulum has swung the other way and patients are, in my opinion, more likely to be overdiagnosed and overtreated. I think we need to aim for somewhere between these two extremes and prioritize people getting the right treatment for the right reason for their distress.”
Dr. Djordjevic added that, with colleagues from Belgrade and the Netherlands, he has published accounts of the experiences of seven individuals who showed regret after gender-affirming surgery.
All of them were born male, “and we confirmed the very poor evaluation and transition process they underwent. We conclude that clinicians should be aware that not everyone with gender identity disorders need or want all elements of hormonal or surgical therapy,” he told this news organization.
Dr. Edwards-Leeper said that more long-term longitudinal studies are needed that follow individuals who undergo transition under different models of care.
“My prediction is that those who first engage in supportive, gender exploratory therapy, followed by comprehensive assessment, will have the best outcomes, perhaps even if they ultimately detransition, as these individuals will know that they did not jump into irreversible interventions too quickly and had time to make the best decision for themselves at the time,” she concluded.
A version of this article first appeared on Medscape.com.
Over half of people who believed they were transgender, transitioned to the opposite sex, but then regretted it and transitioned back – known as detransitioners – felt they did not receive adequate evaluation from a doctor or mental health professional before starting transition, new research indicates.
In what is thought to be the first study to ask whether detransitioners informed their original clinicians of their regret at transitioning, only 24 of the 100 surveyed said they had done so.
This strongly suggests that records on detransition may understate the real numbers, said Lisa Littman, MD, MPH, president of The Institute for Comprehensive Gender Dysphoria Research (ICGDR), who is the sole author of the study, published in Archives of Sexual Behavior.
She stressed that the findings illustrate the complexity surrounding gender dysphoria. “We need to recognize that there are many different types of experiences around gender dysphoria, transition, and detransition,” she told this news organization.
She said there is some resistance among certain health care professionals, and in society in general, to the idea that transitioning is not always successful.
‘We need to understand why this is happening’
“Detransition exists and we need to understand why this is happening,” Dr. Littman emphasized.
She observed that some supporters of “rapid transition” do not want to accept that transitioning helps some individuals but harms others.
“In the end, our goals should be providing the right treatment for the right patient, and without a thorough evaluation, clinicians are at serious risk of giving patients the wrong treatment,” she urged.
She noted that, despite some individuals feeling better after transition, these people still felt inclined to detransition because of discrimination and pressure.
“Individuals should not be pressured to detransition, nor should they be pressured to transition. Both types of pressure were reported by respondents.”
The recently recognized shift from mostly natal males to natal females seeking to transition was borne out by her study data, with the proportion of natal girls who detransitioned at 69%.
‘Shedding light’ on often ignored population
Asked to comment on the study, Laura Edwards-Leeper, PhD, a clinical psychologist from Beaverton, Ore., who specializes in gender-diverse and transgender children, welcomed Dr. Littman’s study.
It is, said Dr. Edwards-Leeper, a “critical preliminary step toward shedding light on this often-ignored and dismissed population of individuals who deserve support, compassion, and sometimes medical intervention from health care providers.”
She added that multiple online reports attest to detransitioners feeling they had not received adequate evaluation prior to medically transitioning, as well as many who expressed feeling too ashamed or angry to return to their same clinicians to detransition.
“Littman’s study provides quantitative support for both of these reported experiences, further emphasizing the importance of the field taking a closer look at the processes currently in place for those experiencing gender dysphoria,” said Dr. Edwards-Leeper.
And Miroslav L. Djordjevic, MD, PhD, professor of surgery/urology, University of Belgrade (Serbia), who is a specialist in urogenital reconstructive surgery and has performed over 2,000 gender-reassignment surgeries in transgender individuals, has recently seen many cases of regret after such surgeries, with requests for reversal operations.
“Despite the fact that medical detransition is relatively safe and without severe consequences, surgical detransition presents one of the most difficult issues in transgender medicine,” Dr. Djordjevic told this news organization.
Commending Dr. Littman on her study, he drew attention to some of the bioethical questions that arise relating to those who detransition.
“I ask what happened in the period before medical transitioning? Was there proper psychological care during medical transitioning? Who confirmed their desire for detransition – the same professionals who did the transition?” or someone else, he continued. “And who accepted these individuals for gender-affirming surgery and what were the criteria for this decision?”
Substantial study of reasons for both transitioning and detransitioning
In her article, Dr. Littman describes a 100-strong population of individuals (66 Americans, 9 British, 9 Canadian, 4 Australians, and 12 from “other” nations), ranging in age from 18 years to over 60 years with a mean age of 29.2 years, who had experienced gender dysphoria, chosen to undergo medical and/or surgical transition, and then detransitioned by discontinuing medications, having reversal surgery, or both.
Participants completed a 115-question survey providing data including age at first experience of gender dysphoria, when participants first sought transitioning care and from whom, and whether they felt pressured to do so. Friendship group dynamics were also explored.
Various narratives of participants’ transitioning-detransitioning experiences were gathered and grouped, for example, those related to discrimination pressures, experiences of trauma or mental health conditions prior to transition, and reports of internalized homophobia.
Dr. Edwards-Leeper observed that the study offers a more extensive assessment of reasons for detransitioning than any other prior research in the field, which has been sparse.
A survey published in April found that detransitioners report significant unmet medical and psychological needs, and a lack of compassion and help from medical and mental health practitioners.
But another 2021 study concluded most detransitioners only reverted to their birth sex because of societal or family pressure, discrimination, or shift to a nonbinary identity.
“However, [Dr.] Littman’s study found that only a small percentage actually detransitioned for that reason [23%], whereas the majority detransitioned because of a change in how the individual understood being a male or female, resulting in becoming comfortable in their assigned gender [60%],” noted Dr. Edwards-Leeper.
Reasons for detransitioning
Asked to expand upon the motives for detransition identified in her study, Dr. Littman told this news organization: “We found remarkable breadth in the reasons given for detransitioning.”
“I believe that we were able to capture the diversity of experiences around detransition because we reached out to communities that were strongly ‘protransition’ – like the World Professional Association for Transgender Health – and communities where individuals might be more skeptical about transition being universally beneficial, like detransition forums,” she said.
Speaking to the complexity of the experiences, 87% selected more than one reason for detransitioning.
The most common reason (60%) was becoming more comfortable identifying with their birth sex, followed by having concerns about potential medical complications from transitioning (49.0%).
Regarding those who became more comfortable with their natal sex, Dr. Littman noted that the finding adds “further support that gender dysphoria is not always permanent.”
She added that, “because most gender-dysphoric youth who are allowed to go through puberty grow up to be lesbian, gay, or bisexual (LGB) nontransgender adults, intervening too soon with medical treatments risks derailing their development as LGB individuals.”
Internalized homophobia or difficulty accepting themselves as lesbian, gay, or bisexual was reported by 23% of participants as a reason for transition and subsequent detransition.
“For these people, transitioning could be interpreted as an attempt to escape the reality of being same-sex attracted and detransitioning was part of accepting themselves as homosexual or bisexual,” explained Dr. Littman.
“Exploring their distress and discomfort around sexual orientation issues may have been more helpful to them than medical and surgical transition or at least an important part of exploration,” she added in the article.
Societal pressure, friends, and social media also play a role
The latest first-hand reports also support prior work by Dr. Littman when she first identified the concept she termed rapid-onset gender dysphoria (ROGD) to describe a sudden transgender identification, usually in the early teenage years, and with no prior indication of any gender questioning.
ROGD, Dr. Littman believes, is strongly related to psychosocial factors, such as trauma, mental health problems, or social influence contributing to the development of gender dysphoria.
The current study found that 58% of respondents expressed the belief that the cause of their gender dysphoria was something specific, such as trauma, abuse, or a mental health condition, with respondents suggesting that transitioning prevented, or delayed, them from addressing their underlying mental health conditions.
One participant is quoted as saying: “I was deeply uncomfortable with my secondary sex characteristics, which I now understand was a result of childhood trauma and associating my secondary sex characteristics with those events.”
Reflecting on their previous identification as transgender, more than a third of respondents reported that someone else told them their feelings meant they were transgender, and they believed them.
“This speaks to the effect social influence can have on people’s interpretation of their own feelings and their development of a transgender identity,” Dr. Littman remarked.
“Participants also listed several social media sources that encouraged them to believe that transitioning would help them,” she added.
Several friendship group dynamics suggestive of social influence were reported by a subset of respondents, including the fact that their friendship groups mocked people who were not transgender and their popularity increased when they announced they were going to transition.
Pendulum has swung too far the other way
Natal females, who in recent years have made up most referrals, were younger than natal males when they sought transition and decided to detransition; and they stayed “transitioned” for a shorter period than natal males. They were also more likely to have experienced a trauma less than 1 year before the onset of gender dysphoria and were more likely to have felt pressured to transition.
“Because the females in the study transitioned more recently than the males, they may have experienced a culture where there is more of a ‘push’ to transition,” Dr. Littman pointed out.
She added that, “20 years ago, gender-dysphoric patients were most likely to be underdiagnosed and undertreated. Now, the pendulum has swung the other way and patients are, in my opinion, more likely to be overdiagnosed and overtreated. I think we need to aim for somewhere between these two extremes and prioritize people getting the right treatment for the right reason for their distress.”
Dr. Djordjevic added that, with colleagues from Belgrade and the Netherlands, he has published accounts of the experiences of seven individuals who showed regret after gender-affirming surgery.
All of them were born male, “and we confirmed the very poor evaluation and transition process they underwent. We conclude that clinicians should be aware that not everyone with gender identity disorders need or want all elements of hormonal or surgical therapy,” he told this news organization.
Dr. Edwards-Leeper said that more long-term longitudinal studies are needed that follow individuals who undergo transition under different models of care.
“My prediction is that those who first engage in supportive, gender exploratory therapy, followed by comprehensive assessment, will have the best outcomes, perhaps even if they ultimately detransition, as these individuals will know that they did not jump into irreversible interventions too quickly and had time to make the best decision for themselves at the time,” she concluded.
A version of this article first appeared on Medscape.com.
Over half of people who believed they were transgender, transitioned to the opposite sex, but then regretted it and transitioned back – known as detransitioners – felt they did not receive adequate evaluation from a doctor or mental health professional before starting transition, new research indicates.
In what is thought to be the first study to ask whether detransitioners informed their original clinicians of their regret at transitioning, only 24 of the 100 surveyed said they had done so.
This strongly suggests that records on detransition may understate the real numbers, said Lisa Littman, MD, MPH, president of The Institute for Comprehensive Gender Dysphoria Research (ICGDR), who is the sole author of the study, published in Archives of Sexual Behavior.
She stressed that the findings illustrate the complexity surrounding gender dysphoria. “We need to recognize that there are many different types of experiences around gender dysphoria, transition, and detransition,” she told this news organization.
She said there is some resistance among certain health care professionals, and in society in general, to the idea that transitioning is not always successful.
‘We need to understand why this is happening’
“Detransition exists and we need to understand why this is happening,” Dr. Littman emphasized.
She observed that some supporters of “rapid transition” do not want to accept that transitioning helps some individuals but harms others.
“In the end, our goals should be providing the right treatment for the right patient, and without a thorough evaluation, clinicians are at serious risk of giving patients the wrong treatment,” she urged.
She noted that, despite some individuals feeling better after transition, these people still felt inclined to detransition because of discrimination and pressure.
“Individuals should not be pressured to detransition, nor should they be pressured to transition. Both types of pressure were reported by respondents.”
The recently recognized shift from mostly natal males to natal females seeking to transition was borne out by her study data, with the proportion of natal girls who detransitioned at 69%.
‘Shedding light’ on often ignored population
Asked to comment on the study, Laura Edwards-Leeper, PhD, a clinical psychologist from Beaverton, Ore., who specializes in gender-diverse and transgender children, welcomed Dr. Littman’s study.
It is, said Dr. Edwards-Leeper, a “critical preliminary step toward shedding light on this often-ignored and dismissed population of individuals who deserve support, compassion, and sometimes medical intervention from health care providers.”
She added that multiple online reports attest to detransitioners feeling they had not received adequate evaluation prior to medically transitioning, as well as many who expressed feeling too ashamed or angry to return to their same clinicians to detransition.
“Littman’s study provides quantitative support for both of these reported experiences, further emphasizing the importance of the field taking a closer look at the processes currently in place for those experiencing gender dysphoria,” said Dr. Edwards-Leeper.
And Miroslav L. Djordjevic, MD, PhD, professor of surgery/urology, University of Belgrade (Serbia), who is a specialist in urogenital reconstructive surgery and has performed over 2,000 gender-reassignment surgeries in transgender individuals, has recently seen many cases of regret after such surgeries, with requests for reversal operations.
“Despite the fact that medical detransition is relatively safe and without severe consequences, surgical detransition presents one of the most difficult issues in transgender medicine,” Dr. Djordjevic told this news organization.
Commending Dr. Littman on her study, he drew attention to some of the bioethical questions that arise relating to those who detransition.
“I ask what happened in the period before medical transitioning? Was there proper psychological care during medical transitioning? Who confirmed their desire for detransition – the same professionals who did the transition?” or someone else, he continued. “And who accepted these individuals for gender-affirming surgery and what were the criteria for this decision?”
Substantial study of reasons for both transitioning and detransitioning
In her article, Dr. Littman describes a 100-strong population of individuals (66 Americans, 9 British, 9 Canadian, 4 Australians, and 12 from “other” nations), ranging in age from 18 years to over 60 years with a mean age of 29.2 years, who had experienced gender dysphoria, chosen to undergo medical and/or surgical transition, and then detransitioned by discontinuing medications, having reversal surgery, or both.
Participants completed a 115-question survey providing data including age at first experience of gender dysphoria, when participants first sought transitioning care and from whom, and whether they felt pressured to do so. Friendship group dynamics were also explored.
Various narratives of participants’ transitioning-detransitioning experiences were gathered and grouped, for example, those related to discrimination pressures, experiences of trauma or mental health conditions prior to transition, and reports of internalized homophobia.
Dr. Edwards-Leeper observed that the study offers a more extensive assessment of reasons for detransitioning than any other prior research in the field, which has been sparse.
A survey published in April found that detransitioners report significant unmet medical and psychological needs, and a lack of compassion and help from medical and mental health practitioners.
But another 2021 study concluded most detransitioners only reverted to their birth sex because of societal or family pressure, discrimination, or shift to a nonbinary identity.
“However, [Dr.] Littman’s study found that only a small percentage actually detransitioned for that reason [23%], whereas the majority detransitioned because of a change in how the individual understood being a male or female, resulting in becoming comfortable in their assigned gender [60%],” noted Dr. Edwards-Leeper.
Reasons for detransitioning
Asked to expand upon the motives for detransition identified in her study, Dr. Littman told this news organization: “We found remarkable breadth in the reasons given for detransitioning.”
“I believe that we were able to capture the diversity of experiences around detransition because we reached out to communities that were strongly ‘protransition’ – like the World Professional Association for Transgender Health – and communities where individuals might be more skeptical about transition being universally beneficial, like detransition forums,” she said.
Speaking to the complexity of the experiences, 87% selected more than one reason for detransitioning.
The most common reason (60%) was becoming more comfortable identifying with their birth sex, followed by having concerns about potential medical complications from transitioning (49.0%).
Regarding those who became more comfortable with their natal sex, Dr. Littman noted that the finding adds “further support that gender dysphoria is not always permanent.”
She added that, “because most gender-dysphoric youth who are allowed to go through puberty grow up to be lesbian, gay, or bisexual (LGB) nontransgender adults, intervening too soon with medical treatments risks derailing their development as LGB individuals.”
Internalized homophobia or difficulty accepting themselves as lesbian, gay, or bisexual was reported by 23% of participants as a reason for transition and subsequent detransition.
“For these people, transitioning could be interpreted as an attempt to escape the reality of being same-sex attracted and detransitioning was part of accepting themselves as homosexual or bisexual,” explained Dr. Littman.
“Exploring their distress and discomfort around sexual orientation issues may have been more helpful to them than medical and surgical transition or at least an important part of exploration,” she added in the article.
Societal pressure, friends, and social media also play a role
The latest first-hand reports also support prior work by Dr. Littman when she first identified the concept she termed rapid-onset gender dysphoria (ROGD) to describe a sudden transgender identification, usually in the early teenage years, and with no prior indication of any gender questioning.
ROGD, Dr. Littman believes, is strongly related to psychosocial factors, such as trauma, mental health problems, or social influence contributing to the development of gender dysphoria.
The current study found that 58% of respondents expressed the belief that the cause of their gender dysphoria was something specific, such as trauma, abuse, or a mental health condition, with respondents suggesting that transitioning prevented, or delayed, them from addressing their underlying mental health conditions.
One participant is quoted as saying: “I was deeply uncomfortable with my secondary sex characteristics, which I now understand was a result of childhood trauma and associating my secondary sex characteristics with those events.”
Reflecting on their previous identification as transgender, more than a third of respondents reported that someone else told them their feelings meant they were transgender, and they believed them.
“This speaks to the effect social influence can have on people’s interpretation of their own feelings and their development of a transgender identity,” Dr. Littman remarked.
“Participants also listed several social media sources that encouraged them to believe that transitioning would help them,” she added.
Several friendship group dynamics suggestive of social influence were reported by a subset of respondents, including the fact that their friendship groups mocked people who were not transgender and their popularity increased when they announced they were going to transition.
Pendulum has swung too far the other way
Natal females, who in recent years have made up most referrals, were younger than natal males when they sought transition and decided to detransition; and they stayed “transitioned” for a shorter period than natal males. They were also more likely to have experienced a trauma less than 1 year before the onset of gender dysphoria and were more likely to have felt pressured to transition.
“Because the females in the study transitioned more recently than the males, they may have experienced a culture where there is more of a ‘push’ to transition,” Dr. Littman pointed out.
She added that, “20 years ago, gender-dysphoric patients were most likely to be underdiagnosed and undertreated. Now, the pendulum has swung the other way and patients are, in my opinion, more likely to be overdiagnosed and overtreated. I think we need to aim for somewhere between these two extremes and prioritize people getting the right treatment for the right reason for their distress.”
Dr. Djordjevic added that, with colleagues from Belgrade and the Netherlands, he has published accounts of the experiences of seven individuals who showed regret after gender-affirming surgery.
All of them were born male, “and we confirmed the very poor evaluation and transition process they underwent. We conclude that clinicians should be aware that not everyone with gender identity disorders need or want all elements of hormonal or surgical therapy,” he told this news organization.
Dr. Edwards-Leeper said that more long-term longitudinal studies are needed that follow individuals who undergo transition under different models of care.
“My prediction is that those who first engage in supportive, gender exploratory therapy, followed by comprehensive assessment, will have the best outcomes, perhaps even if they ultimately detransition, as these individuals will know that they did not jump into irreversible interventions too quickly and had time to make the best decision for themselves at the time,” she concluded.
A version of this article first appeared on Medscape.com.
Psychiatrists shift stance on gender dysphoria, recommend therapy
A new position statement from the Royal Australian and New Zealand College of Psychiatrists (RANZCP) stresses the importance of a mental health evaluation for people with gender dysphoria – in particular for children and adolescents – before any firm decisions are made on whether to prescribe hormonal treatments to transition, or perform surgeries, often referred to as “gender-affirming care.”
“There is a paucity of quality evidence on the outcomes of those presenting with gender dysphoria. In particular, there is a need for better evidence in relation to outcomes for children and young people,” the guidance states.
Because gender dysphoria “is associated with significant distress ... each case should be assessed by a mental health professional, which will frequently be a psychiatrist, with the person at the center of care. It is important the psychological state and context in which gender dysphoria has arisen is explored to assess the most appropriate treatment,” it adds.
The move by the psychiatry body represents a big shift in the landscape regarding recommendations for the treatment of gender dysphoria in Australia and New Zealand.
Asked to explain the new RANZCP position, Philip Morris, MBBS, FRANZCP, said: “The College acknowledged the complexity of the issues and the legitimacy of different approaches.”
Exploration of a patient’s reasons for identifying as transgender is essential, he said in an interview, especially when it comes to young people.
“There may be other reasons for doing it, and we need to look for those, identify them and treat them. This needs to be done before initiating hormones and changing the whole physical nature of the child,” he said.
“A cautious psychotherapy-first approach makes sense. If we can do that with adolescents, then we will take a big step in the right direction,” stressed Dr. Morris, who is president of the National Association of Practising Psychiatrists in Australia.
Keira Bell case and Scandinavian stance lead to more open discussion
The rapid rise in gender dysphoria among adolescents in the Western world, referred to as “rapid-onset” or “late-onset” gender dysphoria, has seen a huge increase in the number of natal girls presenting and created frenzied debate that has intensified worldwide in the last 12 months about how to best treat youth with gender dysphoria.
Concerns have arisen that some transgender identification is due to social contagion, and there is a growing number of “detransitioners” – people who identified as transgender, transitioned to the opposite gender, but then regretted their decision, changed their minds, and “detransitioned” back to their birth sex. If they have had hormone therapy, and in some cases surgery, they are left with irreversible changes to their bodies.
As a result, Scandinavian countries, most notably Finland, once eager advocates of the gender-affirmative approach, have pulled back and issued new treatment guidelines in 2020 stating that psychotherapy, rather than gender reassignment, should be the first line of treatment for gender-dysphoric youth.
This, along with a landmark High Court decision in the U.K. regarding the use of puberty-blocking drugs for children with gender dysphoria, brought by detransitioner Keira Bell, which was recently overturned by the Appeal Court, but which Ms. Bell now says she will take to the Supreme Court, has led to a considerable shift in the conversation around treating transgender adolescents with hormonal therapy, says Dr. Morris.
“This [has moved from] ... a topic that could previously not be talked about freely to one that we can discuss more openly now. This is a big improvement. Previously, everyone thought it was all settled, but it’s not, certainly not from a medical angle,” he states.
At odds with prior Australian recommendations
The RANZCP had previously endorsed the standard guidelines of the Royal Children’s Hospital (RCH) Melbourne, followed by most gender-identity services in Australia and similar guidance from New Zealand, which both recommend gender-affirming care.
“Increasing evidence demonstrates that with supportive, gender-affirming care during childhood and adolescence, harms can be ameliorated and mental health and well-being outcomes can be significantly improved,” state the RCH guidelines.
But in 2019, RANZCP removed its endorsement of the RCH guidelines and started a consultation, which resulted in the new position statement.
However, Ken Pang, MD, of the Murdoch Children’s Research Institute in Melbourne and an author of the RCH guidelines, says the key recommendations of the new RANZCP position statement are consistent with their own guidelines.
The former note “the need for a skilled mental health clinician in providing comprehensive exploration of a child or adolescent’s biopsychosocial context,” Dr. Pang says.
However, it’s difficult not to see the contrast in stance when the new RANZCP statement maintains: “Research on gender dysphoria is still emerging. There are polarized views and mixed evidence regarding treatment options for people presenting with gender identity concerns, especially children and young people.”
Dr. Pang says the RCH guidelines do, however, recognize the need for further research in the field.
“I look forward to being able to incorporate such research, including from our own Trans20 study, into future revisions of our guidelines,” he told this news organization.
Watch your backs with affirmative therapy: Will there be a compromise?
Dr. Morris says there will obviously be cases where “the child might transition with a medical intervention, but that wouldn’t be the first step.”
And yet, he adds, “There are those who push the pro-trans view that everyone should be allowed to transition, and the doctors are only technicians that provide hormones with no questions asked.”
But from a doctor’s perspective, clinicians will still be held responsible in medical and legal terms for the treatments given, he stressed.
“I don’t think they will ever not be accountable for that. They will always need to determine in their own mind whether their actions have positive value that outweigh any disadvantages,” Dr. Morris continues.
The RANZCP statement does, in fact, stress just this.
All health care professionals need to “be aware of ethical and medicolegal dilemmas” pertaining to affirmative therapy, it indicates. “Psychiatrists should practice within the relevant laws and accepted professional standards in relation to assessing capacity and obtaining consent...”
Dr. Morris hopes there will ultimately be many more checks and balances in place and that courts and clinicians will need to step back and not assume every child who seeks to transition is doing it as a result of pure gender dysphoria.
He predicts that things will end in a compromise.
“In my view, this compromise will treat children with respect and approach them like any other patient that presents with a condition that requires proper assessment and treatment.”
“In the end, some cases will be transitioned, but there will be fewer than [are] transitioned at the moment,” he predicts.
Dr. Morris has reported no relevant financial relationships. Dr. Pang is a member of the Australian Professional Association for Trans Health and its research committee.
A version of this article first appeared on Medscape.com.
A new position statement from the Royal Australian and New Zealand College of Psychiatrists (RANZCP) stresses the importance of a mental health evaluation for people with gender dysphoria – in particular for children and adolescents – before any firm decisions are made on whether to prescribe hormonal treatments to transition, or perform surgeries, often referred to as “gender-affirming care.”
“There is a paucity of quality evidence on the outcomes of those presenting with gender dysphoria. In particular, there is a need for better evidence in relation to outcomes for children and young people,” the guidance states.
Because gender dysphoria “is associated with significant distress ... each case should be assessed by a mental health professional, which will frequently be a psychiatrist, with the person at the center of care. It is important the psychological state and context in which gender dysphoria has arisen is explored to assess the most appropriate treatment,” it adds.
The move by the psychiatry body represents a big shift in the landscape regarding recommendations for the treatment of gender dysphoria in Australia and New Zealand.
Asked to explain the new RANZCP position, Philip Morris, MBBS, FRANZCP, said: “The College acknowledged the complexity of the issues and the legitimacy of different approaches.”
Exploration of a patient’s reasons for identifying as transgender is essential, he said in an interview, especially when it comes to young people.
“There may be other reasons for doing it, and we need to look for those, identify them and treat them. This needs to be done before initiating hormones and changing the whole physical nature of the child,” he said.
“A cautious psychotherapy-first approach makes sense. If we can do that with adolescents, then we will take a big step in the right direction,” stressed Dr. Morris, who is president of the National Association of Practising Psychiatrists in Australia.
Keira Bell case and Scandinavian stance lead to more open discussion
The rapid rise in gender dysphoria among adolescents in the Western world, referred to as “rapid-onset” or “late-onset” gender dysphoria, has seen a huge increase in the number of natal girls presenting and created frenzied debate that has intensified worldwide in the last 12 months about how to best treat youth with gender dysphoria.
Concerns have arisen that some transgender identification is due to social contagion, and there is a growing number of “detransitioners” – people who identified as transgender, transitioned to the opposite gender, but then regretted their decision, changed their minds, and “detransitioned” back to their birth sex. If they have had hormone therapy, and in some cases surgery, they are left with irreversible changes to their bodies.
As a result, Scandinavian countries, most notably Finland, once eager advocates of the gender-affirmative approach, have pulled back and issued new treatment guidelines in 2020 stating that psychotherapy, rather than gender reassignment, should be the first line of treatment for gender-dysphoric youth.
This, along with a landmark High Court decision in the U.K. regarding the use of puberty-blocking drugs for children with gender dysphoria, brought by detransitioner Keira Bell, which was recently overturned by the Appeal Court, but which Ms. Bell now says she will take to the Supreme Court, has led to a considerable shift in the conversation around treating transgender adolescents with hormonal therapy, says Dr. Morris.
“This [has moved from] ... a topic that could previously not be talked about freely to one that we can discuss more openly now. This is a big improvement. Previously, everyone thought it was all settled, but it’s not, certainly not from a medical angle,” he states.
At odds with prior Australian recommendations
The RANZCP had previously endorsed the standard guidelines of the Royal Children’s Hospital (RCH) Melbourne, followed by most gender-identity services in Australia and similar guidance from New Zealand, which both recommend gender-affirming care.
“Increasing evidence demonstrates that with supportive, gender-affirming care during childhood and adolescence, harms can be ameliorated and mental health and well-being outcomes can be significantly improved,” state the RCH guidelines.
But in 2019, RANZCP removed its endorsement of the RCH guidelines and started a consultation, which resulted in the new position statement.
However, Ken Pang, MD, of the Murdoch Children’s Research Institute in Melbourne and an author of the RCH guidelines, says the key recommendations of the new RANZCP position statement are consistent with their own guidelines.
The former note “the need for a skilled mental health clinician in providing comprehensive exploration of a child or adolescent’s biopsychosocial context,” Dr. Pang says.
However, it’s difficult not to see the contrast in stance when the new RANZCP statement maintains: “Research on gender dysphoria is still emerging. There are polarized views and mixed evidence regarding treatment options for people presenting with gender identity concerns, especially children and young people.”
Dr. Pang says the RCH guidelines do, however, recognize the need for further research in the field.
“I look forward to being able to incorporate such research, including from our own Trans20 study, into future revisions of our guidelines,” he told this news organization.
Watch your backs with affirmative therapy: Will there be a compromise?
Dr. Morris says there will obviously be cases where “the child might transition with a medical intervention, but that wouldn’t be the first step.”
And yet, he adds, “There are those who push the pro-trans view that everyone should be allowed to transition, and the doctors are only technicians that provide hormones with no questions asked.”
But from a doctor’s perspective, clinicians will still be held responsible in medical and legal terms for the treatments given, he stressed.
“I don’t think they will ever not be accountable for that. They will always need to determine in their own mind whether their actions have positive value that outweigh any disadvantages,” Dr. Morris continues.
The RANZCP statement does, in fact, stress just this.
All health care professionals need to “be aware of ethical and medicolegal dilemmas” pertaining to affirmative therapy, it indicates. “Psychiatrists should practice within the relevant laws and accepted professional standards in relation to assessing capacity and obtaining consent...”
Dr. Morris hopes there will ultimately be many more checks and balances in place and that courts and clinicians will need to step back and not assume every child who seeks to transition is doing it as a result of pure gender dysphoria.
He predicts that things will end in a compromise.
“In my view, this compromise will treat children with respect and approach them like any other patient that presents with a condition that requires proper assessment and treatment.”
“In the end, some cases will be transitioned, but there will be fewer than [are] transitioned at the moment,” he predicts.
Dr. Morris has reported no relevant financial relationships. Dr. Pang is a member of the Australian Professional Association for Trans Health and its research committee.
A version of this article first appeared on Medscape.com.
A new position statement from the Royal Australian and New Zealand College of Psychiatrists (RANZCP) stresses the importance of a mental health evaluation for people with gender dysphoria – in particular for children and adolescents – before any firm decisions are made on whether to prescribe hormonal treatments to transition, or perform surgeries, often referred to as “gender-affirming care.”
“There is a paucity of quality evidence on the outcomes of those presenting with gender dysphoria. In particular, there is a need for better evidence in relation to outcomes for children and young people,” the guidance states.
Because gender dysphoria “is associated with significant distress ... each case should be assessed by a mental health professional, which will frequently be a psychiatrist, with the person at the center of care. It is important the psychological state and context in which gender dysphoria has arisen is explored to assess the most appropriate treatment,” it adds.
The move by the psychiatry body represents a big shift in the landscape regarding recommendations for the treatment of gender dysphoria in Australia and New Zealand.
Asked to explain the new RANZCP position, Philip Morris, MBBS, FRANZCP, said: “The College acknowledged the complexity of the issues and the legitimacy of different approaches.”
Exploration of a patient’s reasons for identifying as transgender is essential, he said in an interview, especially when it comes to young people.
“There may be other reasons for doing it, and we need to look for those, identify them and treat them. This needs to be done before initiating hormones and changing the whole physical nature of the child,” he said.
“A cautious psychotherapy-first approach makes sense. If we can do that with adolescents, then we will take a big step in the right direction,” stressed Dr. Morris, who is president of the National Association of Practising Psychiatrists in Australia.
Keira Bell case and Scandinavian stance lead to more open discussion
The rapid rise in gender dysphoria among adolescents in the Western world, referred to as “rapid-onset” or “late-onset” gender dysphoria, has seen a huge increase in the number of natal girls presenting and created frenzied debate that has intensified worldwide in the last 12 months about how to best treat youth with gender dysphoria.
Concerns have arisen that some transgender identification is due to social contagion, and there is a growing number of “detransitioners” – people who identified as transgender, transitioned to the opposite gender, but then regretted their decision, changed their minds, and “detransitioned” back to their birth sex. If they have had hormone therapy, and in some cases surgery, they are left with irreversible changes to their bodies.
As a result, Scandinavian countries, most notably Finland, once eager advocates of the gender-affirmative approach, have pulled back and issued new treatment guidelines in 2020 stating that psychotherapy, rather than gender reassignment, should be the first line of treatment for gender-dysphoric youth.
This, along with a landmark High Court decision in the U.K. regarding the use of puberty-blocking drugs for children with gender dysphoria, brought by detransitioner Keira Bell, which was recently overturned by the Appeal Court, but which Ms. Bell now says she will take to the Supreme Court, has led to a considerable shift in the conversation around treating transgender adolescents with hormonal therapy, says Dr. Morris.
“This [has moved from] ... a topic that could previously not be talked about freely to one that we can discuss more openly now. This is a big improvement. Previously, everyone thought it was all settled, but it’s not, certainly not from a medical angle,” he states.
At odds with prior Australian recommendations
The RANZCP had previously endorsed the standard guidelines of the Royal Children’s Hospital (RCH) Melbourne, followed by most gender-identity services in Australia and similar guidance from New Zealand, which both recommend gender-affirming care.
“Increasing evidence demonstrates that with supportive, gender-affirming care during childhood and adolescence, harms can be ameliorated and mental health and well-being outcomes can be significantly improved,” state the RCH guidelines.
But in 2019, RANZCP removed its endorsement of the RCH guidelines and started a consultation, which resulted in the new position statement.
However, Ken Pang, MD, of the Murdoch Children’s Research Institute in Melbourne and an author of the RCH guidelines, says the key recommendations of the new RANZCP position statement are consistent with their own guidelines.
The former note “the need for a skilled mental health clinician in providing comprehensive exploration of a child or adolescent’s biopsychosocial context,” Dr. Pang says.
However, it’s difficult not to see the contrast in stance when the new RANZCP statement maintains: “Research on gender dysphoria is still emerging. There are polarized views and mixed evidence regarding treatment options for people presenting with gender identity concerns, especially children and young people.”
Dr. Pang says the RCH guidelines do, however, recognize the need for further research in the field.
“I look forward to being able to incorporate such research, including from our own Trans20 study, into future revisions of our guidelines,” he told this news organization.
Watch your backs with affirmative therapy: Will there be a compromise?
Dr. Morris says there will obviously be cases where “the child might transition with a medical intervention, but that wouldn’t be the first step.”
And yet, he adds, “There are those who push the pro-trans view that everyone should be allowed to transition, and the doctors are only technicians that provide hormones with no questions asked.”
But from a doctor’s perspective, clinicians will still be held responsible in medical and legal terms for the treatments given, he stressed.
“I don’t think they will ever not be accountable for that. They will always need to determine in their own mind whether their actions have positive value that outweigh any disadvantages,” Dr. Morris continues.
The RANZCP statement does, in fact, stress just this.
All health care professionals need to “be aware of ethical and medicolegal dilemmas” pertaining to affirmative therapy, it indicates. “Psychiatrists should practice within the relevant laws and accepted professional standards in relation to assessing capacity and obtaining consent...”
Dr. Morris hopes there will ultimately be many more checks and balances in place and that courts and clinicians will need to step back and not assume every child who seeks to transition is doing it as a result of pure gender dysphoria.
He predicts that things will end in a compromise.
“In my view, this compromise will treat children with respect and approach them like any other patient that presents with a condition that requires proper assessment and treatment.”
“In the end, some cases will be transitioned, but there will be fewer than [are] transitioned at the moment,” he predicts.
Dr. Morris has reported no relevant financial relationships. Dr. Pang is a member of the Australian Professional Association for Trans Health and its research committee.
A version of this article first appeared on Medscape.com.
Transgender individuals twice as likely to die as general population
Mortality is consistently twice as high in transgender people receiving hormone treatment, compared with cisgender individuals in the general population and has not decreased over time, results of a 5 decades–long study from the Netherlands indicate.
Particularly concerning is that trans women (male to female) had a mortality risk nearly double that of cis men (born and remain male) in the general Dutch population (standardized mortality ratio, 1.8), while it was nearly triple that of cis women (SMR, 2.8).
Compared with cisgender women, transgender women were more than twice as likely to die from heart disease, three times more likely to die from lung cancer, and almost nine times more likely to die from infection. HIV-related disease mortality risk was nearly 50 times higher for trans women than cis women, and the risk of suicide was almost seven times greater.
Suicide and other nonnatural causes of death were more common in trans men, compared with cis women.
The report, by Christel J.M. de Blok, MD, of Amsterdam University Medical Center and colleagues, was published online Sept. 2 in The Lancet Diabetes & Endocrinology.
The study included trans men who received testosterone to transition from female to male and trans women who received estrogen plus an antiandrogen to transition from male to female.
Is gender-affirming hormone therapy associated with increased mortality?
Senior author Martin den Heijer, MD, also of Amsterdam University Medical Center, said: “The findings of our large, nationwide study highlight a substantially increased mortality risk among transgender people that has persisted for decades.”
But he pointed out that, overall, the data do not appear to suggest the premature deaths were related to gender-affirming hormone treatment.
However, he conceded that more work is needed on this aspect of care. “There is insufficient evidence at present to determine long-term safety of [gender-affirming hormone treatment]. More research is needed to fully establish whether it in any way affects mortality risk for transgender people,” said Dr. den Heijer.
Endocrinologist Will Malone, MD, of Twin Falls, Idaho, told this news organization, “The study confirms, like others before it, that individuals taking cross-sex hormones are more likely to die prematurely from a number of causes.”
“While the authors speculate that this higher mortality rate is not connected to cross-sex hormones, the study was not designed to be able to make such a claim,” he said, pointing to limited follow-up times.
In an accompanying commentary, Vin Tangpricha, MD, PhD, an endocrinologist from Emory University, Atlanta, noted: “Transgender men do not appear to have as significantly increased comorbidity following receipt of gender-affirming hormone therapy when compared with transgender women.”
Dr. Tangpricha added future studies should examine which factors – hormone regimen, hormone concentrations, access to health care, or other biological factors – explain the higher increased risk of morbidity and mortality observed in trans women as opposed to trans men.
However, Dr. de Blok and colleagues note that, as there were relatively few deaths among transgender men in the cohort, analysis on cause of death in this group is limited.
Transgender individuals more likely to die younger
For their study, Dutch researchers retrospectively examined data from 4,568 transgender people attending their clinic (2,927 transgender women and 1,641 transgender men) treated in 1972-2018. People were excluded if they started treatment before the age of 17 or if they had received puberty-blocking drugs.
Data on age at start of hormone treatment, type of treatment, smoking habits, medical history, and last date of follow-up were gathered from medical records. Where possible, SMRs were determined for deaths among trans men and trans women, compared with rates for the adult Dutch general population.
Median age at the start of cross-sex hormone treatment was 30 years in transgender women and 23 years in transgender men. But the median follow-up time was only 11 years in transgender women and 5 years in transgender men.
A total of 317 (10.8%) trans women died, and 44 (2.7%) trans men died. The findings were higher than expected, compared with the general population of cisgender women (SMR, 1.8) but not cisgender men (SMR 1.2).
Mortality risk did increase more in transgender people who started gender-affirming hormone treatment in the past 2 decades compared with earlier, a fact that Dr. de Blok said was surprising.
Trans men, for example, compared with cis women, had an SMR of 2.1-2.4 in 2000-2018 (compared with 1.8 overall).
“This may be due to changes in clinical practice. ... In the past, health care providers were reluctant to provide hormone treatment to people with a history of comorbidities such as cardiovascular disease. However, because of the many benefits of enabling people to access hormone therapy, nowadays this rarely results in treatment being denied,” Dr. de Blok noted.
More research needed, especially in trans-identifying youth
Dr. Malone remarked that previous studies have shown associations between taking cross-sex hormones and elevated mortality, while also “not designed to detect causality,” have “generally accepted that natal males who take estrogen have estrogen-related increases in the rates of heart disease, stroke, and deep venous thrombosis.”
He added that the risks of testosterone use in natal females were less well established, “but testosterone is also felt to increase their risk of heart disease.”
He stressed the limited follow-up times in the study by Dr. de Blok and colleagues.
This “strongly suggests that the rate of elevated mortality far exceeds the doubling measured by the study, especially for natal females.”
Dr. Malone is one of several clinicians and researchers who has formed the Society for Evidence-Based Gender Medicine, a nonprofit organization that now has at least 100 physician members. SEGM is concerned about the lack of quality evidence for the use of hormonal and surgical interventions as first-line treatment, especially for young people with gender dysphoria.
Dr. Tangpricha also highlighted that the findings do not apply to transgender people who began treatment before age 17 years or those who had taken puberty blockers before gender-affirming hormone treatment.
There are no long-term data on transgender individuals who have received gender-affirming hormone therapies close to the time of puberty.
These data, such as those from the Trans Youth Care study, should be available in the future, he added.
The authors have reported no relevant financial relationships. Dr. Tangpricha has reported receiving funding from the National Institutes of Health and served as past president of the World Professional Association for Transgender Health. He is editor-in-chief of Endocrine Practice and has provided expert testimony for Kirkland and Ellis.
A version of this article first appeared on Medscape.com.
Mortality is consistently twice as high in transgender people receiving hormone treatment, compared with cisgender individuals in the general population and has not decreased over time, results of a 5 decades–long study from the Netherlands indicate.
Particularly concerning is that trans women (male to female) had a mortality risk nearly double that of cis men (born and remain male) in the general Dutch population (standardized mortality ratio, 1.8), while it was nearly triple that of cis women (SMR, 2.8).
Compared with cisgender women, transgender women were more than twice as likely to die from heart disease, three times more likely to die from lung cancer, and almost nine times more likely to die from infection. HIV-related disease mortality risk was nearly 50 times higher for trans women than cis women, and the risk of suicide was almost seven times greater.
Suicide and other nonnatural causes of death were more common in trans men, compared with cis women.
The report, by Christel J.M. de Blok, MD, of Amsterdam University Medical Center and colleagues, was published online Sept. 2 in The Lancet Diabetes & Endocrinology.
The study included trans men who received testosterone to transition from female to male and trans women who received estrogen plus an antiandrogen to transition from male to female.
Is gender-affirming hormone therapy associated with increased mortality?
Senior author Martin den Heijer, MD, also of Amsterdam University Medical Center, said: “The findings of our large, nationwide study highlight a substantially increased mortality risk among transgender people that has persisted for decades.”
But he pointed out that, overall, the data do not appear to suggest the premature deaths were related to gender-affirming hormone treatment.
However, he conceded that more work is needed on this aspect of care. “There is insufficient evidence at present to determine long-term safety of [gender-affirming hormone treatment]. More research is needed to fully establish whether it in any way affects mortality risk for transgender people,” said Dr. den Heijer.
Endocrinologist Will Malone, MD, of Twin Falls, Idaho, told this news organization, “The study confirms, like others before it, that individuals taking cross-sex hormones are more likely to die prematurely from a number of causes.”
“While the authors speculate that this higher mortality rate is not connected to cross-sex hormones, the study was not designed to be able to make such a claim,” he said, pointing to limited follow-up times.
In an accompanying commentary, Vin Tangpricha, MD, PhD, an endocrinologist from Emory University, Atlanta, noted: “Transgender men do not appear to have as significantly increased comorbidity following receipt of gender-affirming hormone therapy when compared with transgender women.”
Dr. Tangpricha added future studies should examine which factors – hormone regimen, hormone concentrations, access to health care, or other biological factors – explain the higher increased risk of morbidity and mortality observed in trans women as opposed to trans men.
However, Dr. de Blok and colleagues note that, as there were relatively few deaths among transgender men in the cohort, analysis on cause of death in this group is limited.
Transgender individuals more likely to die younger
For their study, Dutch researchers retrospectively examined data from 4,568 transgender people attending their clinic (2,927 transgender women and 1,641 transgender men) treated in 1972-2018. People were excluded if they started treatment before the age of 17 or if they had received puberty-blocking drugs.
Data on age at start of hormone treatment, type of treatment, smoking habits, medical history, and last date of follow-up were gathered from medical records. Where possible, SMRs were determined for deaths among trans men and trans women, compared with rates for the adult Dutch general population.
Median age at the start of cross-sex hormone treatment was 30 years in transgender women and 23 years in transgender men. But the median follow-up time was only 11 years in transgender women and 5 years in transgender men.
A total of 317 (10.8%) trans women died, and 44 (2.7%) trans men died. The findings were higher than expected, compared with the general population of cisgender women (SMR, 1.8) but not cisgender men (SMR 1.2).
Mortality risk did increase more in transgender people who started gender-affirming hormone treatment in the past 2 decades compared with earlier, a fact that Dr. de Blok said was surprising.
Trans men, for example, compared with cis women, had an SMR of 2.1-2.4 in 2000-2018 (compared with 1.8 overall).
“This may be due to changes in clinical practice. ... In the past, health care providers were reluctant to provide hormone treatment to people with a history of comorbidities such as cardiovascular disease. However, because of the many benefits of enabling people to access hormone therapy, nowadays this rarely results in treatment being denied,” Dr. de Blok noted.
More research needed, especially in trans-identifying youth
Dr. Malone remarked that previous studies have shown associations between taking cross-sex hormones and elevated mortality, while also “not designed to detect causality,” have “generally accepted that natal males who take estrogen have estrogen-related increases in the rates of heart disease, stroke, and deep venous thrombosis.”
He added that the risks of testosterone use in natal females were less well established, “but testosterone is also felt to increase their risk of heart disease.”
He stressed the limited follow-up times in the study by Dr. de Blok and colleagues.
This “strongly suggests that the rate of elevated mortality far exceeds the doubling measured by the study, especially for natal females.”
Dr. Malone is one of several clinicians and researchers who has formed the Society for Evidence-Based Gender Medicine, a nonprofit organization that now has at least 100 physician members. SEGM is concerned about the lack of quality evidence for the use of hormonal and surgical interventions as first-line treatment, especially for young people with gender dysphoria.
Dr. Tangpricha also highlighted that the findings do not apply to transgender people who began treatment before age 17 years or those who had taken puberty blockers before gender-affirming hormone treatment.
There are no long-term data on transgender individuals who have received gender-affirming hormone therapies close to the time of puberty.
These data, such as those from the Trans Youth Care study, should be available in the future, he added.
The authors have reported no relevant financial relationships. Dr. Tangpricha has reported receiving funding from the National Institutes of Health and served as past president of the World Professional Association for Transgender Health. He is editor-in-chief of Endocrine Practice and has provided expert testimony for Kirkland and Ellis.
A version of this article first appeared on Medscape.com.
Mortality is consistently twice as high in transgender people receiving hormone treatment, compared with cisgender individuals in the general population and has not decreased over time, results of a 5 decades–long study from the Netherlands indicate.
Particularly concerning is that trans women (male to female) had a mortality risk nearly double that of cis men (born and remain male) in the general Dutch population (standardized mortality ratio, 1.8), while it was nearly triple that of cis women (SMR, 2.8).
Compared with cisgender women, transgender women were more than twice as likely to die from heart disease, three times more likely to die from lung cancer, and almost nine times more likely to die from infection. HIV-related disease mortality risk was nearly 50 times higher for trans women than cis women, and the risk of suicide was almost seven times greater.
Suicide and other nonnatural causes of death were more common in trans men, compared with cis women.
The report, by Christel J.M. de Blok, MD, of Amsterdam University Medical Center and colleagues, was published online Sept. 2 in The Lancet Diabetes & Endocrinology.
The study included trans men who received testosterone to transition from female to male and trans women who received estrogen plus an antiandrogen to transition from male to female.
Is gender-affirming hormone therapy associated with increased mortality?
Senior author Martin den Heijer, MD, also of Amsterdam University Medical Center, said: “The findings of our large, nationwide study highlight a substantially increased mortality risk among transgender people that has persisted for decades.”
But he pointed out that, overall, the data do not appear to suggest the premature deaths were related to gender-affirming hormone treatment.
However, he conceded that more work is needed on this aspect of care. “There is insufficient evidence at present to determine long-term safety of [gender-affirming hormone treatment]. More research is needed to fully establish whether it in any way affects mortality risk for transgender people,” said Dr. den Heijer.
Endocrinologist Will Malone, MD, of Twin Falls, Idaho, told this news organization, “The study confirms, like others before it, that individuals taking cross-sex hormones are more likely to die prematurely from a number of causes.”
“While the authors speculate that this higher mortality rate is not connected to cross-sex hormones, the study was not designed to be able to make such a claim,” he said, pointing to limited follow-up times.
In an accompanying commentary, Vin Tangpricha, MD, PhD, an endocrinologist from Emory University, Atlanta, noted: “Transgender men do not appear to have as significantly increased comorbidity following receipt of gender-affirming hormone therapy when compared with transgender women.”
Dr. Tangpricha added future studies should examine which factors – hormone regimen, hormone concentrations, access to health care, or other biological factors – explain the higher increased risk of morbidity and mortality observed in trans women as opposed to trans men.
However, Dr. de Blok and colleagues note that, as there were relatively few deaths among transgender men in the cohort, analysis on cause of death in this group is limited.
Transgender individuals more likely to die younger
For their study, Dutch researchers retrospectively examined data from 4,568 transgender people attending their clinic (2,927 transgender women and 1,641 transgender men) treated in 1972-2018. People were excluded if they started treatment before the age of 17 or if they had received puberty-blocking drugs.
Data on age at start of hormone treatment, type of treatment, smoking habits, medical history, and last date of follow-up were gathered from medical records. Where possible, SMRs were determined for deaths among trans men and trans women, compared with rates for the adult Dutch general population.
Median age at the start of cross-sex hormone treatment was 30 years in transgender women and 23 years in transgender men. But the median follow-up time was only 11 years in transgender women and 5 years in transgender men.
A total of 317 (10.8%) trans women died, and 44 (2.7%) trans men died. The findings were higher than expected, compared with the general population of cisgender women (SMR, 1.8) but not cisgender men (SMR 1.2).
Mortality risk did increase more in transgender people who started gender-affirming hormone treatment in the past 2 decades compared with earlier, a fact that Dr. de Blok said was surprising.
Trans men, for example, compared with cis women, had an SMR of 2.1-2.4 in 2000-2018 (compared with 1.8 overall).
“This may be due to changes in clinical practice. ... In the past, health care providers were reluctant to provide hormone treatment to people with a history of comorbidities such as cardiovascular disease. However, because of the many benefits of enabling people to access hormone therapy, nowadays this rarely results in treatment being denied,” Dr. de Blok noted.
More research needed, especially in trans-identifying youth
Dr. Malone remarked that previous studies have shown associations between taking cross-sex hormones and elevated mortality, while also “not designed to detect causality,” have “generally accepted that natal males who take estrogen have estrogen-related increases in the rates of heart disease, stroke, and deep venous thrombosis.”
He added that the risks of testosterone use in natal females were less well established, “but testosterone is also felt to increase their risk of heart disease.”
He stressed the limited follow-up times in the study by Dr. de Blok and colleagues.
This “strongly suggests that the rate of elevated mortality far exceeds the doubling measured by the study, especially for natal females.”
Dr. Malone is one of several clinicians and researchers who has formed the Society for Evidence-Based Gender Medicine, a nonprofit organization that now has at least 100 physician members. SEGM is concerned about the lack of quality evidence for the use of hormonal and surgical interventions as first-line treatment, especially for young people with gender dysphoria.
Dr. Tangpricha also highlighted that the findings do not apply to transgender people who began treatment before age 17 years or those who had taken puberty blockers before gender-affirming hormone treatment.
There are no long-term data on transgender individuals who have received gender-affirming hormone therapies close to the time of puberty.
These data, such as those from the Trans Youth Care study, should be available in the future, he added.
The authors have reported no relevant financial relationships. Dr. Tangpricha has reported receiving funding from the National Institutes of Health and served as past president of the World Professional Association for Transgender Health. He is editor-in-chief of Endocrine Practice and has provided expert testimony for Kirkland and Ellis.
A version of this article first appeared on Medscape.com.
To be, or not to be? More counseling needed for gender dysphoria
Clinicians should not blindly accept a person’s self-diagnosis as transgender and desire to medically transition without closer inspection; rather, they should make a distinction between ‘acceptance’ and conducting an in-depth, respectful, and collaborative exploration of an individual’s claims about what they believe will best promote their well-being.
These are the conclusions of two experts in ethics and clinical psychology in an extended essay published in the Journal of Medical Ethics.
“It’s not about making life harder for people who wish to transition but about improving care for all people who identify as transgender,” lead author Alessandra Lemma, DClin Psych, visiting professor in the psychoanalysis unit at University College London, said in an interview.
She stressed that the argument is neither for nor against medical transitioning per se.
“It’s an invitation to think about how the medical and mental health care communities can best support anyone considering a transition, whether they eventually pursue that course of action or not. The provision of psychotherapy, irrespective of whether the individual medically transitions or not, makes for a better outcome either way,” said Dr. Lemma, who cares for adolescents as well as adults with gender dysphoria in her private practice in London.
Reflective space has been eroded in gender identity services for the young
There has been an exponential increase in the number of adolescents who identify as transgender in Western countries in recent years. This news organization has covered the debate in detail, which has intensified worldwide in the last 12 months, regarding how best to treat youth with gender dysphoria.
This has “raised concern about how the laudable aims of gender affirmative care may be ushering children and young people too quickly into medical transitioning,” generally defined as treatment with puberty blockers in minors followed by cross-sex hormones to transition to the opposite sex, “leading subsequently to a wish to detransition with all the attendant physical and psychological complications,” wrote Dr. Lemma and her coauthor, Julian Savulescu, MD, professor of practical ethics, University of Oxford (England).
While the United Kingdom and other countries such as Finland have tightened regulations regarding the treatment of minors, “these medical interventions continue to be provided in many other countries,” they noted.
Such affirmative care has recently been interpreted by “influential sections of the transgender community” as forbidding “’questioning’ of any kind of the person’s stated gender and what will help them,” the essayists stated.
But Dr. Lemma noted that, for teenagers, this is typically a time to “try on” different identities and ways of presenting oneself to the world.
“All this requires a reflective space during the decision-making process, and this has been eroded in many gender identity services for young people especially, with a massive pressure on services.”
Family issues, trauma, and comorbid conditions can all influence people too, she noted, adding that what may be happening unconsciously may be driving the decision to modify the body.
“I cannot see that it would be harmful to anyone to have the opportunity to really think about what they are doing before making decisions about medical interventions,” she asserted.
Decision to transition must be judged to be autonomous
Dr. Lemma noted that even in those instances where medical transitioning, on balance, is the best option, it’s important to acknowledge that the process has a psychological impact.
“What matters is that in facing a major life-changing decision, an individual has the opportunity to understand the developmental and social experiences that drive their experience of gender dysphoria such that the decisions they make about medical transitioning can be said to be taken more autonomously,” she and Dr. Savulescu wrote.
And for those people who opt for full gender reassignment surgery, they are the first to say, “I don’t think I could have got through this as well as I have without psychological support,” Dr. Lemma remarked.
Ultimately, what’s important is to ensure the protection of those individuals whose needs will most likely not be met by medical transitioning, while not making it impossible for those who are suffering to get the care they need in order to transition, she concluded.
Until 2016, Dr. Lemma was professor of psychological therapies at the Tavistock and Portman NHS Foundation Trust and Essex University. During that time she worked with adult transgender individuals at the Portman clinic but not at the Gender Identity Service at the Tavistock clinic. Currently, she works in private practice with transgender individuals at the Queen Anne Street Practice, London. Dr. Savulescu has reported no relevant financial relationships.
A version of this article first appeared on Medscape.com.
Clinicians should not blindly accept a person’s self-diagnosis as transgender and desire to medically transition without closer inspection; rather, they should make a distinction between ‘acceptance’ and conducting an in-depth, respectful, and collaborative exploration of an individual’s claims about what they believe will best promote their well-being.
These are the conclusions of two experts in ethics and clinical psychology in an extended essay published in the Journal of Medical Ethics.
“It’s not about making life harder for people who wish to transition but about improving care for all people who identify as transgender,” lead author Alessandra Lemma, DClin Psych, visiting professor in the psychoanalysis unit at University College London, said in an interview.
She stressed that the argument is neither for nor against medical transitioning per se.
“It’s an invitation to think about how the medical and mental health care communities can best support anyone considering a transition, whether they eventually pursue that course of action or not. The provision of psychotherapy, irrespective of whether the individual medically transitions or not, makes for a better outcome either way,” said Dr. Lemma, who cares for adolescents as well as adults with gender dysphoria in her private practice in London.
Reflective space has been eroded in gender identity services for the young
There has been an exponential increase in the number of adolescents who identify as transgender in Western countries in recent years. This news organization has covered the debate in detail, which has intensified worldwide in the last 12 months, regarding how best to treat youth with gender dysphoria.
This has “raised concern about how the laudable aims of gender affirmative care may be ushering children and young people too quickly into medical transitioning,” generally defined as treatment with puberty blockers in minors followed by cross-sex hormones to transition to the opposite sex, “leading subsequently to a wish to detransition with all the attendant physical and psychological complications,” wrote Dr. Lemma and her coauthor, Julian Savulescu, MD, professor of practical ethics, University of Oxford (England).
While the United Kingdom and other countries such as Finland have tightened regulations regarding the treatment of minors, “these medical interventions continue to be provided in many other countries,” they noted.
Such affirmative care has recently been interpreted by “influential sections of the transgender community” as forbidding “’questioning’ of any kind of the person’s stated gender and what will help them,” the essayists stated.
But Dr. Lemma noted that, for teenagers, this is typically a time to “try on” different identities and ways of presenting oneself to the world.
“All this requires a reflective space during the decision-making process, and this has been eroded in many gender identity services for young people especially, with a massive pressure on services.”
Family issues, trauma, and comorbid conditions can all influence people too, she noted, adding that what may be happening unconsciously may be driving the decision to modify the body.
“I cannot see that it would be harmful to anyone to have the opportunity to really think about what they are doing before making decisions about medical interventions,” she asserted.
Decision to transition must be judged to be autonomous
Dr. Lemma noted that even in those instances where medical transitioning, on balance, is the best option, it’s important to acknowledge that the process has a psychological impact.
“What matters is that in facing a major life-changing decision, an individual has the opportunity to understand the developmental and social experiences that drive their experience of gender dysphoria such that the decisions they make about medical transitioning can be said to be taken more autonomously,” she and Dr. Savulescu wrote.
And for those people who opt for full gender reassignment surgery, they are the first to say, “I don’t think I could have got through this as well as I have without psychological support,” Dr. Lemma remarked.
Ultimately, what’s important is to ensure the protection of those individuals whose needs will most likely not be met by medical transitioning, while not making it impossible for those who are suffering to get the care they need in order to transition, she concluded.
Until 2016, Dr. Lemma was professor of psychological therapies at the Tavistock and Portman NHS Foundation Trust and Essex University. During that time she worked with adult transgender individuals at the Portman clinic but not at the Gender Identity Service at the Tavistock clinic. Currently, she works in private practice with transgender individuals at the Queen Anne Street Practice, London. Dr. Savulescu has reported no relevant financial relationships.
A version of this article first appeared on Medscape.com.
Clinicians should not blindly accept a person’s self-diagnosis as transgender and desire to medically transition without closer inspection; rather, they should make a distinction between ‘acceptance’ and conducting an in-depth, respectful, and collaborative exploration of an individual’s claims about what they believe will best promote their well-being.
These are the conclusions of two experts in ethics and clinical psychology in an extended essay published in the Journal of Medical Ethics.
“It’s not about making life harder for people who wish to transition but about improving care for all people who identify as transgender,” lead author Alessandra Lemma, DClin Psych, visiting professor in the psychoanalysis unit at University College London, said in an interview.
She stressed that the argument is neither for nor against medical transitioning per se.
“It’s an invitation to think about how the medical and mental health care communities can best support anyone considering a transition, whether they eventually pursue that course of action or not. The provision of psychotherapy, irrespective of whether the individual medically transitions or not, makes for a better outcome either way,” said Dr. Lemma, who cares for adolescents as well as adults with gender dysphoria in her private practice in London.
Reflective space has been eroded in gender identity services for the young
There has been an exponential increase in the number of adolescents who identify as transgender in Western countries in recent years. This news organization has covered the debate in detail, which has intensified worldwide in the last 12 months, regarding how best to treat youth with gender dysphoria.
This has “raised concern about how the laudable aims of gender affirmative care may be ushering children and young people too quickly into medical transitioning,” generally defined as treatment with puberty blockers in minors followed by cross-sex hormones to transition to the opposite sex, “leading subsequently to a wish to detransition with all the attendant physical and psychological complications,” wrote Dr. Lemma and her coauthor, Julian Savulescu, MD, professor of practical ethics, University of Oxford (England).
While the United Kingdom and other countries such as Finland have tightened regulations regarding the treatment of minors, “these medical interventions continue to be provided in many other countries,” they noted.
Such affirmative care has recently been interpreted by “influential sections of the transgender community” as forbidding “’questioning’ of any kind of the person’s stated gender and what will help them,” the essayists stated.
But Dr. Lemma noted that, for teenagers, this is typically a time to “try on” different identities and ways of presenting oneself to the world.
“All this requires a reflective space during the decision-making process, and this has been eroded in many gender identity services for young people especially, with a massive pressure on services.”
Family issues, trauma, and comorbid conditions can all influence people too, she noted, adding that what may be happening unconsciously may be driving the decision to modify the body.
“I cannot see that it would be harmful to anyone to have the opportunity to really think about what they are doing before making decisions about medical interventions,” she asserted.
Decision to transition must be judged to be autonomous
Dr. Lemma noted that even in those instances where medical transitioning, on balance, is the best option, it’s important to acknowledge that the process has a psychological impact.
“What matters is that in facing a major life-changing decision, an individual has the opportunity to understand the developmental and social experiences that drive their experience of gender dysphoria such that the decisions they make about medical transitioning can be said to be taken more autonomously,” she and Dr. Savulescu wrote.
And for those people who opt for full gender reassignment surgery, they are the first to say, “I don’t think I could have got through this as well as I have without psychological support,” Dr. Lemma remarked.
Ultimately, what’s important is to ensure the protection of those individuals whose needs will most likely not be met by medical transitioning, while not making it impossible for those who are suffering to get the care they need in order to transition, she concluded.
Until 2016, Dr. Lemma was professor of psychological therapies at the Tavistock and Portman NHS Foundation Trust and Essex University. During that time she worked with adult transgender individuals at the Portman clinic but not at the Gender Identity Service at the Tavistock clinic. Currently, she works in private practice with transgender individuals at the Queen Anne Street Practice, London. Dr. Savulescu has reported no relevant financial relationships.
A version of this article first appeared on Medscape.com.
Women not told about need for contraception after IVF births
The contraceptive needs of women who have had in vitro fertilization (IVF) pregnancies are real but are being overlooked, according to study data presented at the Royal College of Obstetricians & Gynaecologists (RCOG) Virtual World Congress 2021.
The interview-based study found that women report not being routinely informed about the chance of spontaneous pregnancy after IVF. “There is scope to follow-up with women after IVF … but information about the chances of spontaneous births and need for contraception isn’t given,” said lead researcher Annette Thwaites, MD, an academic clinical fellow and a senior registrar in Community Sexual and Reproductive Health at Kings College Hospital, London.
“Fertility services, maternity services, and community services could all do more to give women information on contraception postnatally,” Dr. Thwaites said.
“Even if a woman has had IVF previously, a woman shouldn’t lose the right to plan the rest of her family,” she added. “We need to stop shielding these women from the information they really do need.”
Dr. Thwaites first came across the issue around contraception after IVF pregnancy while talking to new mothers in a postnatal ward for another study. Ward staff told her not to enter the rooms with women who had had IVF births, with the implication that these women would not need or want contraception.
With this in mind, Dr. Thwaites and colleagues aimed to better understand the contraceptive needs of women after successful IVF pregnancy to improve service delivery and prevent unplanned and rapid-repeat pregnancies after IVF.
The researchers interviewed 21 women who had spontaneous pregnancies after successful IVF. Participants were aged 35-50 years, the majority were White, British, professional, married for at least 10 years, and living in nuclear families.
Of the spontaneous post-IVF pregnancies in these women, outcomes included single (11) and multiple live births (1 twin), miscarriage (1), ectopic (1) termination of pregnancy (1), and three ongoing pregnancies.
After IVF pregnancy, most women said that they used no contraception or ineffective contraception and had never had a conversation around contraception after IVF.
The women also reported that spontaneous pregnancy was shocking and not universally welcomed, and interpregnancy intervals were often short.
In addition, comments by these women suggested certain aspects of the IVF experience reinforced their perceptions of subfertility. One is quoted as saying, “It seemed to be this big failure if you were having IVF.” Another said, “It’s bad enough that I’m having to conceive my baby like this.”
An unmet need
In her 30 years of practice, Melanie Davies, MD, has seen many women who experience natural pregnancy after IVF. She agrees it is important to address these women’s contraceptive needs but stresses that it needs to be approached carefully.
“It can stir up sensitivities to discuss this issue after having an IVF pregnancy,” said Dr. Davies, a consultant obstetrician and gynecologist at University College London Hospitals, London. “I think many women genuinely think that contraception after IVF just doesn’t apply, but lots of women do have natural pregnancies after IVF. I think women do need this information, but we need to be aware of the sensitivities around this issue, so the way we deliver it is crucial.”
Gwenda Burns, chief executive of the National Patient Charity Fertility Network UK, which supports people before, during, and after fertility treatment, agrees that the process leading up to a successful IVF birth can have lasting effects.
“Fertility struggles and going through fertility treatment can put an enormous strain on both physical and mental health and can have a long-lasting impact,” Ms. Burns said when asked to comment on the new study.
“It is vital that patients receive the right support, guidance, and advice following treatment, including when natural conception may still be possible,” Ms. Burns continued.
Growing population
Given the increasing use of IVF in recent years, Dr. Thwaites said the importance of understanding and meeting the contraceptive needs of women post-IVF is increasingly important. Also, people are turning to it earlier and for other reasons, such as women in same sex relationships, single women, pre-implantation genetic testing, and surrogates.
“During the recruitment process for the current study, I came across women who said since their IVF pregnancies they had no idea what they should do about contraception,” Dr. Thwaites said.
But she empathizes with health care professionals too. “I genuinely feel that health care professionals just don’t know how to advise women in this setting, so they avoid the topic of contraception altogether with these women. They are concerned about making women feel awkward or upsetting them. In my experience, there is very little said about IVF and contraception in the same breath.”
Women believe subfertility always persists after IVF
Among participants in the study, the causes of the women’s subfertility were wide-ranging and included tubal, anovulatory, male factor, joint, and unexplained, the latter of which affects 25% of couples with fertility issues. In the cohort, women had taken up to 9 years to conceive their first child and one had a donor egg conception.
After IVF, the chance of pregnancy will depend on the reason for the couple’s subfertility. “Given that a huge number of patients these days have unexplained subfertility. This is when there is no absolute cause of infertility identified, and it might not prevent a pregnancy but slows it down,” Dr. Davies said in an interview. “Such couples still have a chance of natural pregnancy.”
Polycystic ovary syndrome as a cause of subfertility is often associated with improvement in fertility after IVF, Dr. Davies noted. “This can improve after a spontaneous pregnancy or after IVF, even if the IVF is not a success, and this is possibly due to needling the ovary.”
Dr. Thwaites added that challenging women’s perceptions of their subfertility is critical if headway is to be made on this topic. Many women have persistent views concerning their subfertility after successful IVF, which may be rooted in previous failed treatment; need for repeat cycles or intracytoplasmic sperm injection (ICSI); low numbers of eggs collected; poor quality embryos; and pregnancy complications, to note some of the most common reasons.
“So many [women] feel that they are very lucky to have had a pregnancy because their journey has been difficult. They might have had a successful pregnancy, but they still hold a sense of personal failure,” said Dr. Thwaites. “Even after spontaneous pregnancy some women said it was a miracle or freak event. [Yet two of these] women had two spontaneous pregnancies.”
Remarkably, even after subsequent spontaneous pregnancy, use of contraception and the most effective methods remained low among participants.
As well as fixed beliefs concerning their subfertility, other barriers to contraception use included a lack of knowledge of likelihood of spontaneous pregnancy; lack of contraceptive experience; and inherent incentives towards shorter interpregnancy intervals (e.g., the convenience and privacy of undergoing further IVF while still on maternity leave and availability of frozen embryos).
Looking ahead, Dr. Thwaites says there is a clear need to link and/or expand the maternity services dataset to uncover the true rates of post-IVF spontaneous pregnancy.
Dr. Thwaites and Dr. Davies have disclosed no relevant financial relationships.
A version of this article first appeared on Medscape.com.
The contraceptive needs of women who have had in vitro fertilization (IVF) pregnancies are real but are being overlooked, according to study data presented at the Royal College of Obstetricians & Gynaecologists (RCOG) Virtual World Congress 2021.
The interview-based study found that women report not being routinely informed about the chance of spontaneous pregnancy after IVF. “There is scope to follow-up with women after IVF … but information about the chances of spontaneous births and need for contraception isn’t given,” said lead researcher Annette Thwaites, MD, an academic clinical fellow and a senior registrar in Community Sexual and Reproductive Health at Kings College Hospital, London.
“Fertility services, maternity services, and community services could all do more to give women information on contraception postnatally,” Dr. Thwaites said.
“Even if a woman has had IVF previously, a woman shouldn’t lose the right to plan the rest of her family,” she added. “We need to stop shielding these women from the information they really do need.”
Dr. Thwaites first came across the issue around contraception after IVF pregnancy while talking to new mothers in a postnatal ward for another study. Ward staff told her not to enter the rooms with women who had had IVF births, with the implication that these women would not need or want contraception.
With this in mind, Dr. Thwaites and colleagues aimed to better understand the contraceptive needs of women after successful IVF pregnancy to improve service delivery and prevent unplanned and rapid-repeat pregnancies after IVF.
The researchers interviewed 21 women who had spontaneous pregnancies after successful IVF. Participants were aged 35-50 years, the majority were White, British, professional, married for at least 10 years, and living in nuclear families.
Of the spontaneous post-IVF pregnancies in these women, outcomes included single (11) and multiple live births (1 twin), miscarriage (1), ectopic (1) termination of pregnancy (1), and three ongoing pregnancies.
After IVF pregnancy, most women said that they used no contraception or ineffective contraception and had never had a conversation around contraception after IVF.
The women also reported that spontaneous pregnancy was shocking and not universally welcomed, and interpregnancy intervals were often short.
In addition, comments by these women suggested certain aspects of the IVF experience reinforced their perceptions of subfertility. One is quoted as saying, “It seemed to be this big failure if you were having IVF.” Another said, “It’s bad enough that I’m having to conceive my baby like this.”
An unmet need
In her 30 years of practice, Melanie Davies, MD, has seen many women who experience natural pregnancy after IVF. She agrees it is important to address these women’s contraceptive needs but stresses that it needs to be approached carefully.
“It can stir up sensitivities to discuss this issue after having an IVF pregnancy,” said Dr. Davies, a consultant obstetrician and gynecologist at University College London Hospitals, London. “I think many women genuinely think that contraception after IVF just doesn’t apply, but lots of women do have natural pregnancies after IVF. I think women do need this information, but we need to be aware of the sensitivities around this issue, so the way we deliver it is crucial.”
Gwenda Burns, chief executive of the National Patient Charity Fertility Network UK, which supports people before, during, and after fertility treatment, agrees that the process leading up to a successful IVF birth can have lasting effects.
“Fertility struggles and going through fertility treatment can put an enormous strain on both physical and mental health and can have a long-lasting impact,” Ms. Burns said when asked to comment on the new study.
“It is vital that patients receive the right support, guidance, and advice following treatment, including when natural conception may still be possible,” Ms. Burns continued.
Growing population
Given the increasing use of IVF in recent years, Dr. Thwaites said the importance of understanding and meeting the contraceptive needs of women post-IVF is increasingly important. Also, people are turning to it earlier and for other reasons, such as women in same sex relationships, single women, pre-implantation genetic testing, and surrogates.
“During the recruitment process for the current study, I came across women who said since their IVF pregnancies they had no idea what they should do about contraception,” Dr. Thwaites said.
But she empathizes with health care professionals too. “I genuinely feel that health care professionals just don’t know how to advise women in this setting, so they avoid the topic of contraception altogether with these women. They are concerned about making women feel awkward or upsetting them. In my experience, there is very little said about IVF and contraception in the same breath.”
Women believe subfertility always persists after IVF
Among participants in the study, the causes of the women’s subfertility were wide-ranging and included tubal, anovulatory, male factor, joint, and unexplained, the latter of which affects 25% of couples with fertility issues. In the cohort, women had taken up to 9 years to conceive their first child and one had a donor egg conception.
After IVF, the chance of pregnancy will depend on the reason for the couple’s subfertility. “Given that a huge number of patients these days have unexplained subfertility. This is when there is no absolute cause of infertility identified, and it might not prevent a pregnancy but slows it down,” Dr. Davies said in an interview. “Such couples still have a chance of natural pregnancy.”
Polycystic ovary syndrome as a cause of subfertility is often associated with improvement in fertility after IVF, Dr. Davies noted. “This can improve after a spontaneous pregnancy or after IVF, even if the IVF is not a success, and this is possibly due to needling the ovary.”
Dr. Thwaites added that challenging women’s perceptions of their subfertility is critical if headway is to be made on this topic. Many women have persistent views concerning their subfertility after successful IVF, which may be rooted in previous failed treatment; need for repeat cycles or intracytoplasmic sperm injection (ICSI); low numbers of eggs collected; poor quality embryos; and pregnancy complications, to note some of the most common reasons.
“So many [women] feel that they are very lucky to have had a pregnancy because their journey has been difficult. They might have had a successful pregnancy, but they still hold a sense of personal failure,” said Dr. Thwaites. “Even after spontaneous pregnancy some women said it was a miracle or freak event. [Yet two of these] women had two spontaneous pregnancies.”
Remarkably, even after subsequent spontaneous pregnancy, use of contraception and the most effective methods remained low among participants.
As well as fixed beliefs concerning their subfertility, other barriers to contraception use included a lack of knowledge of likelihood of spontaneous pregnancy; lack of contraceptive experience; and inherent incentives towards shorter interpregnancy intervals (e.g., the convenience and privacy of undergoing further IVF while still on maternity leave and availability of frozen embryos).
Looking ahead, Dr. Thwaites says there is a clear need to link and/or expand the maternity services dataset to uncover the true rates of post-IVF spontaneous pregnancy.
Dr. Thwaites and Dr. Davies have disclosed no relevant financial relationships.
A version of this article first appeared on Medscape.com.
The contraceptive needs of women who have had in vitro fertilization (IVF) pregnancies are real but are being overlooked, according to study data presented at the Royal College of Obstetricians & Gynaecologists (RCOG) Virtual World Congress 2021.
The interview-based study found that women report not being routinely informed about the chance of spontaneous pregnancy after IVF. “There is scope to follow-up with women after IVF … but information about the chances of spontaneous births and need for contraception isn’t given,” said lead researcher Annette Thwaites, MD, an academic clinical fellow and a senior registrar in Community Sexual and Reproductive Health at Kings College Hospital, London.
“Fertility services, maternity services, and community services could all do more to give women information on contraception postnatally,” Dr. Thwaites said.
“Even if a woman has had IVF previously, a woman shouldn’t lose the right to plan the rest of her family,” she added. “We need to stop shielding these women from the information they really do need.”
Dr. Thwaites first came across the issue around contraception after IVF pregnancy while talking to new mothers in a postnatal ward for another study. Ward staff told her not to enter the rooms with women who had had IVF births, with the implication that these women would not need or want contraception.
With this in mind, Dr. Thwaites and colleagues aimed to better understand the contraceptive needs of women after successful IVF pregnancy to improve service delivery and prevent unplanned and rapid-repeat pregnancies after IVF.
The researchers interviewed 21 women who had spontaneous pregnancies after successful IVF. Participants were aged 35-50 years, the majority were White, British, professional, married for at least 10 years, and living in nuclear families.
Of the spontaneous post-IVF pregnancies in these women, outcomes included single (11) and multiple live births (1 twin), miscarriage (1), ectopic (1) termination of pregnancy (1), and three ongoing pregnancies.
After IVF pregnancy, most women said that they used no contraception or ineffective contraception and had never had a conversation around contraception after IVF.
The women also reported that spontaneous pregnancy was shocking and not universally welcomed, and interpregnancy intervals were often short.
In addition, comments by these women suggested certain aspects of the IVF experience reinforced their perceptions of subfertility. One is quoted as saying, “It seemed to be this big failure if you were having IVF.” Another said, “It’s bad enough that I’m having to conceive my baby like this.”
An unmet need
In her 30 years of practice, Melanie Davies, MD, has seen many women who experience natural pregnancy after IVF. She agrees it is important to address these women’s contraceptive needs but stresses that it needs to be approached carefully.
“It can stir up sensitivities to discuss this issue after having an IVF pregnancy,” said Dr. Davies, a consultant obstetrician and gynecologist at University College London Hospitals, London. “I think many women genuinely think that contraception after IVF just doesn’t apply, but lots of women do have natural pregnancies after IVF. I think women do need this information, but we need to be aware of the sensitivities around this issue, so the way we deliver it is crucial.”
Gwenda Burns, chief executive of the National Patient Charity Fertility Network UK, which supports people before, during, and after fertility treatment, agrees that the process leading up to a successful IVF birth can have lasting effects.
“Fertility struggles and going through fertility treatment can put an enormous strain on both physical and mental health and can have a long-lasting impact,” Ms. Burns said when asked to comment on the new study.
“It is vital that patients receive the right support, guidance, and advice following treatment, including when natural conception may still be possible,” Ms. Burns continued.
Growing population
Given the increasing use of IVF in recent years, Dr. Thwaites said the importance of understanding and meeting the contraceptive needs of women post-IVF is increasingly important. Also, people are turning to it earlier and for other reasons, such as women in same sex relationships, single women, pre-implantation genetic testing, and surrogates.
“During the recruitment process for the current study, I came across women who said since their IVF pregnancies they had no idea what they should do about contraception,” Dr. Thwaites said.
But she empathizes with health care professionals too. “I genuinely feel that health care professionals just don’t know how to advise women in this setting, so they avoid the topic of contraception altogether with these women. They are concerned about making women feel awkward or upsetting them. In my experience, there is very little said about IVF and contraception in the same breath.”
Women believe subfertility always persists after IVF
Among participants in the study, the causes of the women’s subfertility were wide-ranging and included tubal, anovulatory, male factor, joint, and unexplained, the latter of which affects 25% of couples with fertility issues. In the cohort, women had taken up to 9 years to conceive their first child and one had a donor egg conception.
After IVF, the chance of pregnancy will depend on the reason for the couple’s subfertility. “Given that a huge number of patients these days have unexplained subfertility. This is when there is no absolute cause of infertility identified, and it might not prevent a pregnancy but slows it down,” Dr. Davies said in an interview. “Such couples still have a chance of natural pregnancy.”
Polycystic ovary syndrome as a cause of subfertility is often associated with improvement in fertility after IVF, Dr. Davies noted. “This can improve after a spontaneous pregnancy or after IVF, even if the IVF is not a success, and this is possibly due to needling the ovary.”
Dr. Thwaites added that challenging women’s perceptions of their subfertility is critical if headway is to be made on this topic. Many women have persistent views concerning their subfertility after successful IVF, which may be rooted in previous failed treatment; need for repeat cycles or intracytoplasmic sperm injection (ICSI); low numbers of eggs collected; poor quality embryos; and pregnancy complications, to note some of the most common reasons.
“So many [women] feel that they are very lucky to have had a pregnancy because their journey has been difficult. They might have had a successful pregnancy, but they still hold a sense of personal failure,” said Dr. Thwaites. “Even after spontaneous pregnancy some women said it was a miracle or freak event. [Yet two of these] women had two spontaneous pregnancies.”
Remarkably, even after subsequent spontaneous pregnancy, use of contraception and the most effective methods remained low among participants.
As well as fixed beliefs concerning their subfertility, other barriers to contraception use included a lack of knowledge of likelihood of spontaneous pregnancy; lack of contraceptive experience; and inherent incentives towards shorter interpregnancy intervals (e.g., the convenience and privacy of undergoing further IVF while still on maternity leave and availability of frozen embryos).
Looking ahead, Dr. Thwaites says there is a clear need to link and/or expand the maternity services dataset to uncover the true rates of post-IVF spontaneous pregnancy.
Dr. Thwaites and Dr. Davies have disclosed no relevant financial relationships.
A version of this article first appeared on Medscape.com.