Decisional regret about surgical and non-surgical issues after genitoplasty among caregivers of female infants with CAH

Rachel S. Fisher, Hannah C. Espeleta, Laurence S. Baskin, Cindy L. Buchanan, Yee Ming Chan, Earl Y. Cheng, Douglas E. Coplen, David A. Diamond, Natalie J. Nokoff, Blake W. Palmer, Dix P. Poppas, Kristy J. Scott Reyes, Amy Tishelman, Cortney Wolfe-Christensen, Larry L. Mullins, Amy B. Wisniewski

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1 Scopus citations

Abstract

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.[Formula presented]

Original languageEnglish
Pages (from-to)27-33
Number of pages7
JournalJournal of Pediatric Urology
Volume18
Issue number1
DOIs
StatePublished - Feb 2022

Keywords

  • Endocrinology
  • Psychology
  • Qualitative research

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