Abstract
ObjectivesTo describe the health of intersex adults (people with differences of sex development) in the U.S. using community-based research methods.MethodsIn July–September 2018, we conducted a national health study of intersex adults aged 18 and older in the U.S., using a survey hosted on Qualtrics. The study describes the physical and mental health experiences of intersex adults, including differences by age (18 to 39 vs. 40 and older). Questions were derived from national (Behavioral Risk Factor Surveillance System) and intersex-related health studies.ResultsA non-probability sample of 198 intersex adults completed the survey over three months. Over 43% of participants rated their physical health as fair/poor and 53% reported fair/poor mental health. Prevalent health diagnoses included depression, anxiety, arthritis, and hypertension, with significant differences by age. Nearly a third reported difficulty with everyday tasks and over half reported serious difficulties with cognitive tasks.ConclusionsTo our knowledge, this is the first national study of intersex adults in the U.S. Greater understanding of intersex health over the life course is essential. Findings highlight the need for longitudinal studies and further examination of potential health disparities experienced by intersex populations.
Highlights
Known as differences of sex development (DSD), encompass a diverse set of congenital differences relating to gonads, chromosomes, and genitals that fall outside typical binary notions of male and female sex [1]
It is challenging to estimate the prevalence of intersex conditions as no existing population studies include questions about intersex diagnoses, experts disagree on what conditions fall under the intersex category, and feelings of shame and stigma may limit disclosure by individuals [2]
The National Institutes of Health (NIH) recognizes intersex people as a sexual and gender minority (SGM) population affected by health disparities, highlighting “DSD populations” as a priority area for research [4]
Summary
In July–September 2018, we conducted a national health study of intersex adults aged 18 and older in the U.S, using a survey hosted on Qualtrics. The study describes the physical and mental health experiences of intersex adults, including differences by age (18 to 39 vs 40 and older). Questions were derived from national (Behavioral Risk Factor Surveillance System) and intersex-related health studies
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