Gender-diverse youth underrepresented in health system data

Key takeaways:

• More youth identified as gender diverse in surveys than in health system data.
• Youth who identified as gender diverse significantly increased over 4 years.

Gender-diverse youth were underrepresented in health system data, according to a study published in Pediatrics.

This was especially true of gender-diverse youth who were assigned male sex at birth and who identified as Asian, Black/African American or Hispanic/Latino.

Since gender-diverse youth do not necessarily experience distress or impairment, they do not meet criteria for gender dysphoria according to the Diagnostic and Statistical Manual of Mental Health Disorders, Fifth Edition, Text Revision, Nicole F. Kahn, PhD, MEd, a clinical research scientist at Seattle Children’s Hospital & Research Institute, and colleagues wrote.

Alternately, they “may not receive a [gender dysphoria] diagnosis because they are not comfortable discussing their gender identity with a provider, have not received care from a medical provider who felt comfortable making a [gender dysphoria] diagnosis, or do not desire gender-affirming medical care such as puberty blockers or gender-affirming hormones to affirm their identity,” the researchers continued.

Therefore, using gender dysphoria diagnoses alone to identify gender-diverse youth in health systems likely underestimates this population, they argued.

In order to compare estimates of gender-diverse youth and identify demographic differences among this group, Kahn and colleagues performed a secondary data analysis of patients aged 14 to 17 years from the PEDSnet learning health system network (n = 392,348) and the CDC’s annual Youth Risk Behavior Survey (n = 270,177).

In all, 0.9% (n = 3,453) of patients in PEDSnet were classified with a gender dysphoria diagnosis, whereas 1.9% (n = 5,262) of survey respondents self-identified as transgender.

Additionally, the proportion of youth who identified as transgender in the survey increased over time from 1.6% (n = 1,719) in 2017 to 2.4% (n = 2,307) in 2021.

Using mixed logistic regression models, the predicted probability of a gender dysphoria diagnosis was 1.01% in PEDSnet, whereas the predicted probability of transgender identity was 1.89% in the survey. In pairwise comparisons, the researchers found that those assigned female vs. male sex at birth had 3.34 times greater odds of having a gender dysphoria diagnosis in PEDSnet and 1.26 times greater odds of identifying as transgender in the survey.

In the PEDSnet sample, Asian youth had significantly lower odds of being diagnosed with gender dysphoria vs. white (adjusted OR = 0.37; 95% CI, 0.26-0.51) and multiracial youth (aOR = 0.34; 95% CI, 0.23-0.5). This was also true of Hispanic/Latino youth vs. white (aOR = 0.44; 95% CI, 0.37-0.52) and multiracial youth (aOR = 0.41; 95% CI, 0.31-0.54). Black/African American youth had significantly lower odds for a gender dysphoria diagnosis vs. all other ethnic/racial groups (Asian, aOR = 0.6; 95% CI, 0.4-0.9); Hispanic/Latino, aOR = 0.55; 95% CI, 0.37-0.67); white, aOR = 0.22; 95% CI, 0.17-0.28; multiracial, aOR = 0.2; 95% CI, 0.15-0.28).

These racial and ethnic group differences were not found in the survey sample, according to the researchers.

“Collecting more accurate gender identity information in health systems and surveys may help better understand the health-related needs and experiences of [gender-diverse youth] and support the development of targeted interventions to promote more equitable care provision,” Kahn and colleagues wrote.

In an accompanying editorial, Meg Quint, BS, and Travis L. Reece-Nguyen, MD, MPH, both of Stanford School of Medicine, noted that additional underrepresentation may stem from providers failing to ask their patients about gender identity.

“The preferred strategy for collecting this information is to ask patients directly, but this is not ubiquitously practiced, especially with the [gender-diverse youth] population because of a lack of provider knowledge on how to ask about gender identity coupled with the prevalent inability to document gender-identity data in many [electronic health record] systems,” Quint and Reece-Nguyen wrote.

They added that improving equity of gender diverse youth representation in health care means ensuring that barriers to accessing gender-affirming care are mitigated, health care providers are trained on gender-affirming communication and data collection techniques, and gender-diverse youth patient autonomy and safety remain the highest priority.

Reference:

Quint M, et al. Pediatrics. 2024;doi:10.1542/peds.2024-065932.