MON-198 - Identifying Disparities within Differences of Sex Development (DSD) Care

Differences of sex development (DSD) encompass a wide range of conditions in which chromosomal, gonadal, and/or anatomic sex development are discordant. Youth with DSD require multidisciplinary care, making early presentation to a DSD clinic important. While disparities in healthcare access among minoritized groups are well documented, equitable access for youth with DSDs has not been explored.

We examined data from clinics within the DSD-Translational Research Network (DSD-TRN) registry to identify patterns in diagnostic delays associated with sociodemographic factors. DSD-TRN prospectively collected longitudinal data from 16 U.S. sites from 2011 to 2024 (N=581). We evaluated group differences in age at presentation to clinic across sociodemographic groups using standardized mean differences (SMDs). Missingness differed across variables. SMDs assess small ( < 0.2), medium (0.5), and large (0.8) effect sizes.

Compared to non-Hispanic White youth (6.9 years), Hispanic youth (7.5 years; SMD -0.10 [CI -0.3, 0.1]) presented later while Black youth (5.2 years; SMD 0.26 [CI -0.06, 0.58]), Asian youth (6.0 years; SMD 0.14 [CI -0.20, 0.47]) and multiracial youth (4.5 years; SMD 0.36 [CI -0.02, 0.71]) presented earlier. Participants whose parents did not complete high school presented later than their peers with at least one parent who completed college (8.2 vs 6.4 years; SMD -0.26 [CI -0.6, 0.1]). Participants whose families reported any financial distress presented later than those who reported no financial concerns (7.3 vs 6.3 years; SMD -0.15 [CI -0.33, 0.03]). Girls presented later than boys (8.0 vs 5.0 years; SMD 0.47 [CI 0.3, 0.65]) and those with an eventual diagnosis of 46, XX DSD presented later than those with a 46, XY DSD diagnosis (7.4 years vs 5.3 years, SMD -0.33 [CI -0.6, -0.1]. There was negligible difference between those with private insurance compared to those with other types of insurance (6.9 vs 6.4 years, SMD 0.07 [CI -0.1, 0.2]).

In this multicenter retrospective cohort study, delays in presentation to specialized DSD care were most evident among girls and children from socioeconomically disadvantaged families, suggesting that social and structural factors may influence timely access to care. Inequities in timing of presentation persisted for traditional socioeconomic factors, including parental education and family financial concerns, whereas race/ethnicity and insurance status were not associated with delayed presentation. Notably, public insurance may confer a protective effect, potentially reflecting the buffering role of near-universal coverage and safety-net systems common in pediatric care. These findings suggest that within DSD care systems, structural access to insurance alone may be insufficient to mitigate disparities driven by broader socioeconomic vulnerability.

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