To assess opinions of females with CAH, and parents of females with CAH, about designating this population “intersex,” particularly in legislation about genital surgery during childhood.
We conducted a mixed-methods (quantitative and qualitative) anonymous cross-sectional online survey of females with CAH (46XX, 16+years old) and independently recruited parents of girls with CAH (2019–2020) diagnosed in first year of life from the United States. A multidisciplinary CAH team drafted the survey in collaboration with women with CAH and parents. Fisher's exact test was used to compare female and parent responses. A qualitative thematic approach was used to analyze open-ended answers for emergent categories of reasons why CAH females should or should not be considered as intersex.
Of 57 females with CAH participating (median age: 39 years, 75.5% of ≥25year olds had post-secondary degree), all had classical CAH and 93.0% underwent genital surgery at median 1–2 years old. While 89.5% did not endorse the intersex designation for CAH, the remaining 5.3% did (5.3% provided no answer, Summary Figure). Most CAH females (63.2%) believed CAH females should be considered separately in “any laws banning or allowing surgery of children's genitals” (19.3% disagreed, 17.5% neutral, 0.0% no answer). Most common themes identified by females with CAH not endorsing an intersex designation were: normal female internal organs, sex chromosomes, personal identity, genital appearance, issues with language, hormones, and those endorsing it: genital appearance, community/group experiences, topic complexity.
Overall, 132 parents of females with CAH participated (parent/child median ages: 40/11 years, 81.7% of ≥25year olds had post-secondary degree). All children had classical CAH and 78.8% underwent surgery at median <1 year old. While 95.5% of parents did not endorse the intersex designation for CAH, 2.3% did (2.3% no answer), similar to females (p = 0.29). Most parents (81.1%) believed CAH females should be considered separately in legislation (9.1% disagreed, 6.1% neutral, 3.8% no answer), a slightly higher percentage than females (p = 0.01).
Echoing previously published disagreement with clinically designating CAH females as intersex, majority of CAH females and parents oppose a legal intersex designation. Differing opinions among females and parents strengthen concern about a one-size-fits-all approach to legislation about childhood genital surgery. Differences in opinions between female and parent responses, while statistically significant, were relatively small.
Abbreviations:CAH (congenital adrenal hyperplasia), IQR (interquartile range), DSD (differences of sex development)
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Published online: September 15, 2020
Accepted: September 10, 2020
Received in revised form: September 4, 2020
Received: July 9, 2020
© 2020 Journal of Pediatric Urology Company. Published by Elsevier Ltd. All rights reserved.
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- Commentary to ‘Majority of females with a life-long experience of CAH and parents do not consider females with CAH to be intersex’Journal of Pediatric UrologyVol. 17Issue 2
- PreviewDespite our evolution to a multidisciplinary care paradigm, despite exponential increases in our medical knowledge, and despite use of that knowledge for shared decision-making with families, we are faced with ongoing controversy in the care of individuals born with differences of sex development, regardless of etiology.