Szymanski, Konrad M.Whittam, BenjaminMonahan, Patrick O.Kaefer, MartinFrady, HeatherCain, Mark P.Rink, Richard C.2019-08-012019-08-012019Szymanski, K. M., Whittam, B., Monahan, P. O., Kaefer, M., Frady, H., Cain, M. P., & Rink, R. C. (2019). Validation and Preliminary Results of the Parental Assessment of Children’s External Genitalia Scale for Females (PACE-F) for Girls With Congenital Adrenal Hyperplasia. Urology, 130, 132-137. https://doi.org/10.1016/j.urology.2019.04.034https://hdl.handle.net/1805/20111Objective 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.enPublisher Policyadrenal hyperplasiacongenitalparent reported outcome measuresArticle