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Provider knowledge of transgender care limited despite increasing prevalence
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Most pediatric health care providers supported further training on caring for children and teenagers who identify as transgender, as more than half of these providers were unaware of current guidelines related to puberty-blocking treatments, according to research presented at the Pediatric Academic Societies 2018 Meeting.
A second study highlighted the need for this knowledge, with rates of medical claims for pediatric and adolescent diagnoses related to gender dysphoria increasing from 576 to 3,495 between 2010 and 2014.
"Since our study found that many pediatric primary care providers did not feel prepared or comfortable caring for transgender and gender-expansive patients, it is important that they access available resources and trainings like webinars, videos and books," Siobhan Gruschow, MPH, MEd, from the Policy Lab at Children’s Hospital of Philadelphia, told Infectious Diseases in Children. "Additionally, requesting trainings at their practices from experts in the field may also provide larger systems of providers with the skills and resources they need to support these youth."
To gain further understanding of current knowledge, opinions and skills related to caring for transgender youth by pediatric primary care providers, Gruschow and colleagues conducted a cross-sectional survey that included pediatric primary care providers from two pediatric hospital care networks and city health department clinics. These providers, who were all located in a large metropolitan area, were recruited for the study via email if they were involved in hospital networks and in person if they provided care in city health centers.
The surveys administered to providers included 18 questions that could be answered electronically or on paper. Information collected included provider knowledge, experience and comfort level related to providing care for transgender youth. Gruschow and colleagues then used descriptive statistics and Pearson chi-square to conduct a bivariate analysis.
Of the 460 providers contacted, 161 responded. Most respondents (83%) reported being a physician, and 11% were nurse practitioners. The average length of time spent practicing medicine was 18.6 years (SD: 10.9; range: 1-44 years). Respondents were likely to be female (83%). When race and ethnicity were assessed, 80% of participants were white, 7% were Asian and 5% were black.
When questioned about professional guidelines related to treatment with puberty-blocking medications for children who are transgender, 54% did not know these recommendations existed. Those who had previously cared for transgender youth reported a higher level of comfort treating these patients when compared with those who had no previous experience (68.3% vs. 23.08%). Providers who had also had experience with those who identify as transgender reported higher levels of comfort related to discussion about gender identity (88.5% vs. 48.8%).
Although high comfort levels were reported by providers who had previously encountered or treated patients who identify as transgender, 86.3% of all providers believed they could become better clinicians if more training was received for the support of these patients.
"As health care providers for young people, it is inevitable that pediatricians will provide care for this population," Gruschow said. "Thus, it is crucial that pediatricians, particularly those in primary care, are well-versed in best practices for transgender care. Without knowledgeable and trans-friendly providers, many transgender and gender-expansive young people can become reluctant to access the care they need for fear of being misgendered, outed or burdened with informing their provider of the care they need."
Provider knowledge and comfort treating transgender youth has become especially important with the rise of medical claims related to gender dysphoria. In a second study authored by Nadia Dowshen, MD, and colleagues, they aimed to observe rates and patterns of these claims by age of the patient and geographic location.
The researchers completed this objective by performing a retrospective analysis that examined medical claims gathered from Clinformatics Data Mart. All data collected were from privately insured enrollees located within the U.S. Dowshen and colleagues then proceeded to identify patients aged between 5 and 21 years who received inpatient and outpatient services using ICD-9 diagnostic codes. All diagnoses were reported between 2010 and 2014.
The researchers categorized patients into more specific age groups, with ranges falling between younger than 13 years, 13 to 18 years and 19 to 21 years. Additionally, Dowshen and colleagues created nine census regions. The prevalence of the population that had received at least one gender dysphoria-related diagnosis was calculated annually.
According to the researchers, 18.4 million children had any medical coverage between 2010 and 2014. In 2010, 113 children and teenagers had a gender dysphoria-related claim. This number rose to 464 by 2014. All related claims rose from 576 to 3,495. When age and geographic region were considered, the researchers observed a consistent increase in prevalence from 0.024 per 1,000 persons in 2010 (95% CI, 0.018-0.032) to 0.13 per 1,000 persons (95% CI, 0.11-0.14) by 2014.
The prevalence of children and adolescents who were diagnosed with gender dysphoria did not vary between any age groups in the study period; however, the researchers observed significant variability between geographic regions each year. The areas in which the fewest numbers of children and adolescents made a claim for gender dysphoria were the East (mean rate: 0.00064) and West South Central (mean rate: 0.025) regions. Higher mean rates were observed in the New England (0.10), Pacific (0.087) and West North Central (0.091) regions.
"With 1% or more of all teenagers identifying as transgender or gender nonconforming, all pediatricians will take care of these young people in their practices," Dowshen told Infectious Diseases in Children. "Many transgender youth will go on to need medical treatments like puberty blockers and hormones to help them live as their true gender selves. Unfortunately, transgender youth who do not receive support experience high rates of depression and suicide attempts."
"It is very important that pediatricians know how to provide the best medical and mental health support to this vulnerable yet resilient population of children and adolescents," Dowshen added. –by Katherine Bortz
References:
Gruschow S, et al. Pediatric primary care provider knowledge, attitudes and skills in caring for transgender youth. Presented at: The Pediatric Academic Societies 2018 Meeting; May 5-8, 2018; Toronto.
Dowshen N, et al. Trends in prevalence of medical claims related to gender dysphoria among children and adolescents in the US from 2010 to 2014. Presented at: The Pediatric Academic Societies 2018 Meeting; May 5-8, 2018; Toronto.
Disclosure: Infectious Diseases in Children was unable to confirm relevant financial disclosures prior to publication.Perspective
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Caroline Salas-Humara, MD
These elegant and complementary studies not only describe an increasing prevalence of youth seeking care for gender dysphoria, but they also demonstrate that our pediatricians are not fully equipped to care for this vulnerable population’s increasing medical and mental health needs. I believe this is extremely important to highlight because pediatricians are the frontline clinicians caring for these youth. The more prepared they are in caring for this unique population, potentially the better the outcomes for these youth.
In practice, I see youth disclose their gender identity to their pediatrician, as well as transgender youth who are more quickly linked to gender-affirming care if the pediatrician provides an affirming and knowledgeable approach to care. In a medical system in which transgender people may feel marginalized, training pediatricians to provide high quality-care for these youth is vitally important.
Perspective
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Nancy Dodson, MD, MPH
Both studies are important and reflect what I see in my clinical practice of transgender adolescents. The study by Gruschow and colleagues looks at pediatric providers’ knowledge of, comfort with and experience with the medical management of transgender children. The authors found a range of comfort levels among providers. Those who had personal experience with a transgender person in their past were more comfortable speaking about gender identity with their patients. Some of my patients report to me that they are the first transgender child their pediatrician has cared for. That does not have to be a negative thing — an open-minded pediatrician can learn a lot from caring for even one transgender patient, and then be more informed when they meet their next one. And, like anything in medicine, it is fine to say, “I don’t know,” as long as you know where to find the information afterward. Pediatricians should have an adolescent medicine physician or endocrinologist at hand who is comfortable with gender medical management, the same way they might have a list of their favorite pediatric gastroenterologists or cardiologists.
One point of concern in the Gruschow study is the fact that more than half of survey respondents did not know that puberty suppression was part of the medical guidelines for the care of transgender children. This is alarming because it means that gender dysphoric children in puberty may be going to their pediatric primary care providers and hearing that there is nothing that can be done. Given the time-sensitive nature of providing puberty blockers, this is an area where we need to raise awareness in the primary care community.
The study by Dowshen and colleagues describes a significant increase in gender dysphoria-related medical claims from 2010 to 2014. Simply put, there are more children encountering the medical system with a chief complaint of gender dysphoria than ever before. I have seen this in the exponential growth of my practice of transgender adolescents, and I am hearing it from the primary care providers who have had to quickly become comfortable with issues of gender management. Parents often ask me whether all of these children are really transgender, or if it is a trend driven in part by high-profile transgender celebrities and media attention. My answer to them is always nuanced. The internet has allowed information to spread and has given some teens the words to describe themselves that they would not have known before. Many children have told me, “when I read about transgenderism online, I finally had a word to describe how I always felt inside.” As we become a more welcoming society, more teens feel comfortable coming out as transgender. Lastly, it may be that for some children, questioning their gender identity may be part of an exploratory quest that is often a part of adolescence. Children try on different identities (peer groups, political beliefs, religious beliefs) and it is reasonable to believe that gender is one of them. For these children, careful and judicious evaluation by professionals will help to determine who is appropriate for medical intervention. Someone wiser than me ( Diane Ehrensaft, PhD, a gender psychologist) once said that “if you listen to a child long enough, they will tell you their gender.”
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