Decisional regret about surgical and non-surgical issues after genitoplasty among caregivers of female infants with CAH. Issue 1 (February 2022)

• Record Type: Journal Article
• Authors: Fisher, Rachel S.; Espeleta, Hannah C.; Baskin, Laurence S.; Buchanan, Cindy L.; Chan, Yee-Ming; Cheng, Earl Y.; Coplen, Douglas E.; Diamond, David A.; Nokoff, Natalie J.; Palmer, Blake W.; Poppas, Dix P.; Scott Reyes, Kristy J.; Tishelman, Amy; Wolfe-Christensen, Cortney; Mullins, Larry L.; Wisniewski, Amy B.
• Is Part Of: Journal of pediatric urology. Volume 18:Issue 1(2022)
• Page Start: 27
• Page End: 33
• Publication Date: 2022-02
• Subjects: Endocrinology -- Psychology -- Qualitative research; Pediatric urology -- Periodicals; Urologic Diseases -- Periodicals; Urogenital Diseases -- Periodicals; Urologic Surgical Procedures -- Periodicals; Child; Infant; Urologie pédiatrique -- Périodiques; Appareil urinaire -- Maladies -- Périodiques; Pédiatrie; Urologie; Pediatric urology; Périodique électronique (Descripteur de forme); Ressource Internet (Descripteur de forme); Electronic journals; Periodicals; Electronic journals; 618.926
• DOI: 10.1016/j.jpurol.2021.10.001
• Languages: English
• ISSNs: 1477-5131

Abstract

Summary: Introduction: Caregivers of female infants with congenital adrenal hyperplasia (CAH) often confront complex medical decision-making (e.g., early feminizing genitoplasty). Objective: This study aimed to evaluate the relevant medical decisions and subsequent decisional regret of caregivers following their child's genitoplasty. Study design: Caregivers ( N = 55) were recruited from multidisciplinary treatment programs for participation in a longitudinal study. Qualitative data was collected at 6–12 months following feminizing genitoplasty to evaluate caregiver-reported decision points across their child's treatment. Quantitative exploratory analysis evaluated pre-operative predictors of subsequent decisional regret. Discussion: When prompted about their decision-making and potential regret, most caregivers (n = 32, 80%) reported that their daughter's genital surgery was their primary medical decision . Specific themes regarding genital surgery included the timing and type of surgery. Most caregivers reported no decisional regret (62%), with 38% reporting some level of regret. Greater pre-operative illness uncertainty predicted heightened decisional regret at follow-up, p = .001. Conclusion: Two-thirds of caregivers of female infants with CAH reported not regretting their decision-making. Nevertheless, over one-third of caregivers reported some level of regret, suggesting the need for improvements in shared decision-making processes. Many, but not all, families reported that this regret was related to surgical decision-making. Reducing caregiver illness uncertainty (e.g., providing clear information to families) may increase their satisfaction with decision-making. Further research is needed to determine how the evolving care practices surrounding early genitoplasty will impact families. Summary Figure Levels of Caregiver Decisional Regret measured by the Decisional Regret Scale. Note. Conventional categorical classification of scores was used: 0 = "no regret", 1 to 25 = "mild regret, " 26 to 100 = "moderate to severe regret". Summary Figure