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Cited by 6Sexual Differentiation and DisordersLGBTQ Health, Identity, and PolicyBody Image and Dysmorphia Studies

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A Multicenter Cross-Sectional Study of Malaysian Females With Congenital Adrenal Hyperplasia: Their Body Image and Their Perspectives on Feminizing Surgery

Zainuddin, Ani Amelia, Grover, Sonia Regina, Soon, Chong Hong, Ghani, Nur Azurah Abdul, Mahdy, Zaleha Abdullah, Manaf, Mohammad Rizal Abdul, Shamsuddin, Khadijah·2020·Journal of Pediatric and Adolescent Gynecology
DOI 10.1016/j.jpag.2020.04.008
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Abstract

Objective To explore the impact of congenital adrenal hyperplasia (CAH) on body image in Malaysian females with CAH and to understand the perspectives of these young women and their parents toward feminizing genitoplasty (FG). Design Multi-center cross-sectional study. Setting Two tertiary medical centers in Malaysia. Participants A total of 59 patients with CAH who were raised as females and more than 10 years old, and their parents. Methods The CAH respondents completed the validated and translated Body Image Disturbance Questionnaires (BIDQ). All CAH respondents and their parents underwent semi-structured interviews to explore their views on FG. Main outcome measures Body image disturbance score and perspectives on FG. Results The 59 CAH respondents consisted of 12 children, 29 adolescents, and 18 adults. The majority were of Malay ethnicity (64.4%) with classical CAH (98.3%) and had undergone FG (n = 55, 93.2%). For the BIDQ scores, the median score (interquartile range) for general body image was 1.29 (0.71), range 1.00-3.29, whereas the genital appearance score was 1.07 (0.39), range 1.00-4.29, revealing a greater concern for general body parts over genitalia. With regards to FG, it was perceived as necessary. Infancy and early childhood were perceived as the best timing for first FG by both respondents and parents, most preferring single-stage over 2-stage surgery. Conclusions General body appearance concerns were greater than for genital appearance, with more impact on the patients' lives. Contrary to much international opinion, feminizing surgery was perceived as necessary and appropriate by CAH respondents and their families, and should be offered in infancy or early childhood. Future qualitative studies are recommended.

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Metadata

Authors
Zainuddin, A. A., Grover, S. R., Soon, C. H., Ghani, N. A. A., Mahdy, Z. A., Manaf, M. R. A., & Shamsuddin, K.
Affiliations
  • University Kebangsaan Malaysia Medical Centre (MY)
  • Royal Children's Hospital (AU)
Corresponding author
Zainuddin, Ani Amelia
ORCID
Venue
Journal of Pediatric and Adolescent Gynecology
Publisher
Elsevier BV
Published
2020-10
Volume
33
Issue
5
Pages
477-483
ISSN
  • 0932-8610 (ISSN-L)
  • 1083-3188
DOI
10.1016/j.jpag.2020.04.008
OpenAlex
W3023323602
Cited by
6
References
3
Citations by year
2024: 2 · 2023: 1 · 2021: 2
FWCI
0.24
Type
journal article
Language
en
Open access
closed
Licence
Locations
  • Journal of Pediatric and Adolescent Gynecology (publishedVersion)
  • PubMed (publishedVersion)
Topics
  • Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Sexual Differentiation and Disorders
  • Social Sciences › Psychology › Social Psychology › LGBTQ Health, Identity, and Policy
  • Social Sciences › Psychology › Clinical Psychology › Body Image and Dysmorphia Studies
Keywords
congenital adrenal hyperplasia, body image, feminizing genitoplasty, gender-affirming surgery, parental attitudes, timing of surgery, adolescents, children, Malaysian women
MeSH terms
Adolescent, Adrenal Hyperplasia, Congenital, Adult, Body Image, Child, Cross-Sectional Studies, Female, Genitalia, Female, Humans, Malaysia, Male, Parents, Surveys and Questionnaires, Young Adult

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