Division of Pediatric Urology, Riley Hospital for Children at IU Health, IN, USA Correspondence to: Konrad M. Szymanski, Division of Pediatric Urology, Riley Hospital for Children at IU Health, 705 Riley Hospital Dr., Suite 4230, Indianapolis, IN 46202, USA szymanko@iupui.edu (K.M. Szymanski) Keywords Adrenal hyperplasia; Congen- ital; Patient reported outcome measures; Urogenital surgical procedures Received 12 September 2017 Accepted 16 November 2017 Available online xxx Parental decisional regret and views about optimal timing of female genital restoration surgery in congenital adrenal hyperplasia Konrad M. Szymanski, Benjamin Whittam, Martin Kaefer, Heather Frady, Jessica T. Casey, Vi T. Tran, Mark P. Cain, Richard C. Rink Summary Purpose The role of female genital restoration surgery (FGRS) in girls with congenital adrenal hyperplasia (CAH) is controversial, with no long-term parent-reported out- comes available. Decisional regret (DR) affects most parents after their children’s treatment of pediatric conditions, including hypospadias. We aimed to assess parental DR after FGRS in infancy or toddlerhood and explore optimal timing for surgery. Materials and methods One-hundred and six parents of females with CAH un- dergoing FGRS before 3 years old and followed at our institution (1999e2017) were invited to enroll online. Higher Decision Regret Scale (DRS) scores indicated greater DR (range 0e100). Participants also reported preferred FGRS timing relative to their surgery (earlier, same, later/delayed). Non-parametric statistical tests were used. Results Thirty-nine parents (median 4.4 years after FGRS) participated (36.8% response rate). Median age at FGRS was 9 months. Median DRS score was 0 (mean: 5.0). Overall, 20.5% of parents reported some regret (all mild-moderate) (Figure). Fewer parents reported DR after FGRS compared with published DR after hypo- spadias repair (50e92%, p  0.001) or adenotonsillec- tomy (41e45%, p  0.03). No parent preferred delayed FGRS. Seven parents (18.1%) preferred earlier surgery, especially when performed after birthday (80.0% vs. 8.8%, p Z 0.004). Discussion We present the first report of validated long-term parent-reported outcomes after FGRS in infant and toddler girls with CAH. One limitation is that this is largely a single surgeon series. Reasons for the observed low levels of DR are likely multifactorial. Far from a definitive study, we aimed to provide parents willing to share about their experience an opportunity to do so. For that reason, selection bias may exist in our study. While parents with higher DR were potentially less likely to participate because of mistrust of the medical estab- lishment, those with a negative experience may in fact be more likely to voice their opinions. A low participation rate was likely a result of the sensitive nature of FGRS, a desire for privacy, and inability to locate parents. A larger study will be required to assess how DR is affected by sexual function, genital appearance and complica- tions, and DR among women with CAH. Conclusions Parents of females with CAH report low levels of DR after FGRS in infancy and toddlerhood. This appears to be lower than after other genital and non-genital pediatric pro- cedures. When present, parental DR is usually mild. No parents preferred delayed surgery, even among those with DR. Some preferred earlier surgery. Figure Histogram of decisional regret scores among parents of girls with CAH after female genital restoration surgery. + MODEL Please cite this article in press as: Szymanski KM, et al., Parental decisional regret and views about optimal timing of female genital restoration surgery in congenital adrenal hyperplasia, Journal of Pediatric Urology (2017), https://doi.org/10.1016/j.jpurol.2017.11.012 https://doi.org/10.1016/j.jpurol.2017.11.012 1477-5131/ª 2018 Journal of Pediatric Urology Company. Published by Elsevier Ltd. All rights reserved. Journal of Pediatric Urology (2017) xx, 1.e1e1.e7 Downloaded for Anonymous User (n/a) at Indiana University - Ruth Lilly Medical Library from ClinicalKey.com by Elsevier on January 14, 2018. For personal use only. No other uses without permission. Copyright ©2018. Elsevier Inc. All rights reserved.