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Single, multi-item measures may better identify disorders of sex development, intersex conditions in population surveys
The use of single- or multi-item measures in population surveys may serve as a useful tool to better account for adults with disorders of sex development or intersex identity, according to research published in LGBT Health.
“Intersex and other DSD conditions are distinct from gender identity and sexual orientation/identity,” Suegee Tamar-Mattis, DO, of interACT, Sudbury, Massachusetts, and colleagues wrote in the study background. No known population studies collect information on individuals with DSD conditions. “Although some people state their gender identity as intersex when given a write-in option on surveys, there is a dearth of information from general community surveys or research using non-clinic-based samples on the objective experiences of health among people with DSD conditions.”
The study was a community-based, participatory research collaboration between university researchers and interACT, an advocacy group dedicated to the rights of children born with DSD conditions or intersex characteristics. Researchers administered an online survey between December 2016 and April 2017 to 111 adults with a diagnosed DSD or those who identified as intersex recruited through Facebook. The internet survey included demographic questions about age, sex assigned at birth, gender identity (open-ended item), race, education and income levels, and area of residence (rural, urban or suburban). An open-ended format was used to ask participants about their DSD condition, including the question “Have you ever been diagnosed by a medical doctor with an intersex condition or a difference of sex development (DSD), or were you born with (or later developed in puberty) genitals, reproductive organs and/or chromosomal patterns that do not fit standard definitions of male or female?” Participants then provided their opinions about the single-item measure and offered suggestions for improving the evaluation of patients with DSD conditions in studies. The researchers evaluated the study sample using univariate analysis.
Within the cohort, 72.1% reported being assigned female sex at both. Researchers observed significant diversity in how patients characterized their gender identity, with the open-ended gender question revealing 36% identified as female, 9.9% identified as male, 32.4% identified as non-binary/gender fluid and 18% identified as intersex, and 3.6% identified as some other gender identity.
Overall, 63.1% of respondents’ gender identities did not align with those they were assigned at birth; only 36.9% had a gender identity that was consistent with the one they were assigned at birth, the researchers wrote.
A diagnosed DSD condition was reported by almost all participants (96.4%), whereas 2.7% reported having intersex-like characteristics, but no DSD diagnosis.
When stratifying by subtype, 41.5% of the patients reported having a form of androgen insensitivity syndrome, including 17.1% with complete androgen insensitivity, 15.3%; with partial androgen insensitivity and 9.1% who did not specify. The following were other identified diagnoses, in order of prevalence: Klinefelter syndrome (8.1%); Swyer syndrome (8.1%); Gonadal Dysgenesis (7.2%); Congenital Adrenal Hyperplasia (6.3%); Mayer-Rokinansky-Kȕster-Hauser Syndrome (3.6%); chimerism (3.6%) cloacal Exstrophy (1.8%); hypospadias (1.8%); mosaicism (1.8%) and bladder exstrophy (0.9%).
Most of the participants (n = 80; 72%) considered the single-item question to assess people with DSD conditions “important and straightforward,” and wished for this item to be included in future survey research. However, some expressed that the question was too medicalized and could alienate those who did not have access to care for a diagnosis, according to the researchers.
“Use of single or multi-item measures in population surveys and in studies related to individuals with DSD conditions and those who identify as intersex can advance knowledge about the health and well-being of these groups, including advancing efforts toward developing standards of care for surgical procedures with these communities,” the researchers wrote. “Future research efforts using more rigorous recruitment strategies are warranted to validate the item put forth by the GenIUSS group and to develop more nuanced measures to assess the diversity of individuals with DSD conditions and/or who identify as intersex, who are not currently counted in survey research.” – by Jennifer Byrne
Disclosure: The authors report no relevant financial disclosures.