Validation and Preliminary Results of the Parental Assessment of Children's External Genitalia Scale for Females (PACE-F)for Girls With Congenital Adrenal Hyperplasia

Konrad M. Szymanski, Benjamin Whittam, Patrick O. Monahan, Martin Kaefer, Heather Frady, Mark P. Cain, Richard C. Rink

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Abstract

Objective: To validate a parental assessment of children's external genitalia scale for females (PACE-F)for girls with congenital adrenal hyperplasia (CAH)by adapting the validated adult female genital self-image scale. Methods: PACE-F was administered to parents of girls (Tanner 1, 2 months-12 years)with and without CAH. Final questions were determined by clinical relevance and psychometric properties (scores: 0-100). A reference range was established using 95% confidence interval among controls. Age-matched controls were compared to girls with CAH (1)<4 years old before and after female genital reconstruction surgery (FGRS), and (2)4-12-year olds after FGRS. Nonparametric statistics were used. Results: Participants included 56 parents of 41 girls with CAH (median 3.9 years old, 97.6% FGRS)and 139 parents of 130 girls without CAH. Face and content validity was established by families, experts, and factor analysis. Internal consistency was high (Cronbach's alpha: 0.83). Population reference score range was 66.7-100. Ten consecutive girls had pre- and post-FGRS PACE-F scores. All scores improved at 4 months after surgery and all preoperative scores were below reference range and lower than controls (P =.0001). All postoperative scores were within reference range, no different from controls (P =.18). Scores for girls with CAH after FGRS aged 4-12 years were no different from controls (100.0 vs 88.9, P =.77)and 90.0% were in reference range, as expected (P =.99). Conclusion: We present a validated instrument for parental assessment of genital appearance in girls with CAH. We demonstrate improved parent-reported appearance after FGRS, with scores similar to age-matched controls.

Original languageEnglish (US)
JournalUrology
DOIs
StatePublished - Jan 1 2019

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ASJC Scopus subject areas

  • Urology

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