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Majority of females with a life-long experience of CAH and parents do not consider females with CAH to be intersex.

Publication ,  Journal Article
Szymanski, KM; Rink, RC; Whittam, B; Hensel, DJ; Life with Congenital Adrenal Hyperplasia Study Group,
Published in: J Pediatr Urol
April 2021

INTRODUCTION: 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. METHODS: 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. RESULTS: 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). DISCUSSION: 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. CONCLUSION: Majority of females with CAH and parents believe CAH should be excluded from the intersex designation, and should be considered separately in legislation pertaining to childhood genital surgery.

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Published In

J Pediatr Urol

DOI

EISSN

1873-4898

Publication Date

April 2021

Volume

17

Issue

2

Start / End Page

210.e1 / 210.e9

Location

England

Related Subject Headings

  • Urology & Nephrology
  • Urogenital Surgical Procedures
  • Parents
  • Male
  • Infant
  • Humans
  • Female
  • Disorders of Sex Development
  • Cross-Sectional Studies
  • Child, Preschool
 

Citation

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Szymanski, K. M., Rink, R. C., Whittam, B., Hensel, D. J., & Life with Congenital Adrenal Hyperplasia Study Group, . (2021). Majority of females with a life-long experience of CAH and parents do not consider females with CAH to be intersex. J Pediatr Urol, 17(2), 210.e1-210.e9. https://doi.org/10.1016/j.jpurol.2020.09.009
Szymanski, Konrad M., Richard C. Rink, Benjamin Whittam, Devon J. Hensel, and Devon J. Life with Congenital Adrenal Hyperplasia Study Group. “Majority of females with a life-long experience of CAH and parents do not consider females with CAH to be intersex.J Pediatr Urol 17, no. 2 (April 2021): 210.e1-210.e9. https://doi.org/10.1016/j.jpurol.2020.09.009.
Szymanski KM, Rink RC, Whittam B, Hensel DJ, Life with Congenital Adrenal Hyperplasia Study Group. Majority of females with a life-long experience of CAH and parents do not consider females with CAH to be intersex. J Pediatr Urol. 2021 Apr;17(2):210.e1-210.e9.
Szymanski, Konrad M., et al. “Majority of females with a life-long experience of CAH and parents do not consider females with CAH to be intersex.J Pediatr Urol, vol. 17, no. 2, Apr. 2021, pp. 210.e1-210.e9. Pubmed, doi:10.1016/j.jpurol.2020.09.009.
Szymanski KM, Rink RC, Whittam B, Hensel DJ, Life with Congenital Adrenal Hyperplasia Study Group. Majority of females with a life-long experience of CAH and parents do not consider females with CAH to be intersex. J Pediatr Urol. 2021 Apr;17(2):210.e1-210.e9.
Journal cover image

Published In

J Pediatr Urol

DOI

EISSN

1873-4898

Publication Date

April 2021

Volume

17

Issue

2

Start / End Page

210.e1 / 210.e9

Location

England

Related Subject Headings

  • Urology & Nephrology
  • Urogenital Surgical Procedures
  • Parents
  • Male
  • Infant
  • Humans
  • Female
  • Disorders of Sex Development
  • Cross-Sectional Studies
  • Child, Preschool