The first US study of its kind paints a concerning picture of the mental and physical health status of intersex adults.
Results of a national survey found that over 60% of intersex respondents, defined as those born with differences in sex traits or reproductive anatomy, had been diagnosed with depression or anxiety.
The findings highlight the importance of educating healthcare professionals on how best to meet the needs of patients with sex differences, lead author Jason D. Flatt, PhD, assistant professor, School of Public Health, University of Nevada, Las Vegas, told Medscape Medical News
"This is a group we need to do more work with, more research with, and we should think about how we can tailor healthcare to their needs," he said.
The study was published online October 9 in PLOS One.
Intersex variations encompass congenital differences related to gonads, chromosomes, and genitals that fall outside typical binary notions of male and female sex.
These variations are identified in utero, at birth, in childhood, or in adulthood, but some individuals may go undiagnosed. Up to about 2% of the population falls within the spectrum of intersex variations, said Flatt.
In the past, the focus has been on surgical interventions in infancy and childhood, but several medical groups have recommended delaying surgeries so that intersex people can make informed decisions about their own bodies.
The current study drew on community partnerships to maximize participation. It included 198 intersex adults (mean age, 37.6 years), of whom 90.4% completed all 84 survey questions.
The researchers stratified respondents by age group ― individuals aged 18 to 39 (62%), and those aged 40 or older.
The study sample included a range of gender identities, sexual orientations, and intersex diagnoses. Of the more than 30 intersex diagnoses respondents reported, the most common were complete androgen insensitivity syndrome (19.1%), partial androgen insensitivity syndrome (18.6%), micropenis (14.9%), clitoromegaly (14.9%), ovo-testes (12.9%), and hypospadias (11.9%).
Over 50% of respondents reported a household income of $40,000 or less, and more than 1 in 4 reported an income of $20,000 or less.
Respondents were relatively well educated. One third (35.9%) had completed a 4-year college degree, and 1 in 4 had a graduate degree.
More than 43% of participants reported being in fair/poor physical health. The most commonly reported physical health diagnoses were asthma (27.3%), arthritis, gout, lupus, or fibromyalgia (27.3%), high blood pressure (24.7%), and osteoporosis (22.7%).
More than half of participants (53.6%) described their mental health as fair or poor. But this varied significantly by age, with 28.2% of younger people reporting poor mental health, compared to just 7.2% of older respondents.
Regarding mental health diagnoses, 61.1% reported having had a depressive disorder, 62.6% an anxiety disorder, and 40.9% posttraumatic stress disorder (PTSD). Rates of depression and PTSD didn't differ significantly by age group, but more individuals in the younger age group reported an anxiety diagnosis (71.2% vs 50.7%; P < .01).
Although the study provided no insight into the high rates of depression and anxiety, Flatt said the investigators speculated that they "could be linked either to some of the shame, some of the challenges these people face in early life, or to the challenges related to healthcare access."
Almost one third of participants (31.8%) reported that they had attempted suicide. In the United States, the lifetime prevalence of suicide attempts is 4.6%.
Regarding functional status, 22.8% reported serious difficulty walking or climbing stairs, 8.3% reported difficulty with dressing or bathing, and almost one third reported difficulty doing errands alone, owing to their physical, mental, or emotional health.
"What we're seeing here looks like accelerated aging. Their functional status looks like that of a much older person," said Flatt.
The reason for this is unclear, he said. "We don't know if it's linked with the mental health aspect or whether it's part of the differences in sex development or due to things like not being welcomed in society."
More than half of respondents reported serious difficulty concentrating, remembering, or making decisions. These problems were more likely to be reported by younger rather than older participants (66.4% vs 40.7%; P = .001).
This higher rate among younger people, said Flatt, might be linked to mental health. He noted that depression has an impact on memory.
Commenting on the findings for Medscape Medical News, Jerel P. Calzo, PhD, MPH, associate professor, School of Public Health, San Diego State University, San Diego, California, said he welcomed the study.
"There is so little known about the health experiences of intersex youth and adults in the US ― or globally," said Calzo, whose research interests include gender and sexual orientation.
"This study represents a substantial effort to increase knowledge about the physical and mental health experiences of intersex adults in the US and sets a precedent for additional work in this area," he said.
Although the data are based on Web-based surveys and the sample is relatively small, the authors "took a careful approach to vetting the quality of their online data and also worked with community members throughout the study design and recruitment process," said Calzo.
He noted that although study participants represented a "nonprobability, convenience sample," researchers used assessments similar to other national epidemiologic surveillance instruments.
"In the absence of a control group, this can enable some preliminary comparisons of the prevalence data detected in this sample to US national trends," Calzo said.
In addition to raising awareness of the diverse physical and mental problems intersex adults face, the findings "shed light on the contributions of social determinants of health, particularly socioeconomic indicators," which can affect physical and mental health, said Calzo.
"For example, the authors found that worrying about money was associated with a 9-plus increase in the odds of reporting a lifetime depression diagnosis," he said.
It's possible, however, that the two broad age groups used in the study "mask important age-related variability in physical and mental health experiences," Calzo noted.
The authors and Calzo have disclosed no relevant financial relationships.
PLoS One. Published online October 9, 2020. Full text
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Cite this: First US Look at Mental, Physical Health of Intersex Adults - Medscape - Oct 16, 2020.