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.

中文翻译：

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对患有先天性肾上腺增生症的马来西亚女性进行的多中心横断面研究：她们的身体形象及其对女性化手术的看法。

 客观的

探讨先天性肾上腺增生 (CAH) 对患有 CAH 的马来西亚女性身体形象的影响，并了解这些年轻女性及其父母对女性化生殖器成形术 (FG) 的看法。

 设计

多中心横断面研究。

 环境

马来西亚有两个三级医疗中心。

 参加者

10岁以上女性CAH患者及其父母共59例。

 方法

CAH 受访者完成了经过验证和翻译的身体形象障碍问卷 (BIDQ)。所有 CAH 受访者及其父母都接受了半结构化访谈，以探讨他们对 FG 的看法。

 主要成果指标

身体意象干扰评分和对 FG 的看法。结果： 59 名 CAH 受访者包括 12 名儿童、29 名青少年和 18 名成人。大多数是马来裔 (64.4%)，患有经典 CAH (98.3%) 并接受过 FG (n = 55, 93.2%)。对于 BIDQ 分数，一般身体形象的中位分数（四分位距）为 1.29 (0.71)，范围 1.00-3.29，而生殖器外观分数为 1.07 (0.39)，范围 1.00-4.29，显示出对一般身体的更大关注生殖器上的部分。对于FG，大家认为是有必要的。受访者和父母都认为婴儿期和幼儿期是首次 FG 的最佳时机，大多数人更喜欢单阶段手术而不是两阶段手术。

 结论

一般身体外观的担忧大于生殖器外观，对患者的生活影响更大。与许多国际观点相反，CAH 受访者及其家人认为女性化手术是必要和适当的，并且应该在婴儿期或幼儿期进行。建议未来进行定性研究。