Rachel S Fisher1, Hannah C Espeleta2, Laurence S Baskin3, Cindy L Buchanan4, Yee-Ming Chan5, Earl Y Cheng6, Douglas E Coplen7, David A Diamond8, Natalie J Nokoff9, Blake W Palmer10, Dix P Poppas11, Kristy J Scott Reyes10, Amy Tishelman12, Cortney Wolfe-Christensen10, Larry L Mullins1, Amy B Wisniewski13. 1. Oklahoma State University, Department of Psychology, Center for Pediatric Psychology, Stillwater, OK, USA. 2. Medical University of South Carolina, College of Nursing, Charleston, SC, USA. 3. University of California San Francisco Medical Center, Department of Urology, San Francisco, CA, USA. 4. University of Colorado Anschutz Medical Campus, Department of Psychiatry, Aurora, CO, USA. 5. Boston Children's Hospital, Division of Endocrinology, Department of Pediatrics, Harvard Medical School, Department of Pediatrics, Boston, MA, USA. 6. Ann & Robert H. Lurie Children's Hospital of Chicago, Department of Urology, Chicago, IL, USA. 7. St. Louis Children's Hospital, Division of Urologic Surgery, St. Louis, MO, USA. 8. University of Rochester Medical Center, Rochester, NY, USA. 9. University of Colorado Anschutz Medical Campus, Department of Pediatrics, Division of Endocrinology, Aurora, CO, USA. 10. Cook Children's Medical Center, Department of Pediatric Urology, Fort Worth, TX, USA. 11. New York Presbyterian Weill Cornell Medicine, Department of Urology, Komansky Children's Hospital, New York, NY, USA. 12. Boston College, Boston, MA, USA. 13. Oklahoma State University, Department of Psychology, Center for Pediatric Psychology, Stillwater, OK, USA. Electronic address: Amy.Wisniewski@okstate.edu.
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.
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.
Authors: Larry L Mullins; David A Fedele; Mark Chaffin; Stephanie E Hullmann; Carol Kenner; Angelica R Eddington; Sean Phipps; Rene Y McNall-Knapp Journal: J Pediatr Psychol Date: 2012-09-03
Authors: Armando J Lorenzo; João L Pippi Salle; Bozana Zlateska; Martin A Koyle; Darius J Bägli; Luis H P Braga Journal: J Urol Date: 2014-03-26 Impact factor: 7.450
Authors: Jamie C Brehaut; Annette M O'Connor; Timothy J Wood; Thomas F Hack; Laura Siminoff; Elisa Gordon; Deb Feldman-Stewart Journal: Med Decis Making Date: 2003 Jul-Aug Impact factor: 2.583
Authors: Konrad M Szymanski; Benjamin Whittam; Martin Kaefer; Heather Frady; Jessica T Casey; Vi T Tran; Mark P Cain; Richard C Rink Journal: J Pediatr Urol Date: 2017-12-28 Impact factor: 1.830
Authors: Avi Baskin; Amy B Wisniewski; Christopher E Aston; Paul Austin; Yee-Ming Chan; Earl Y Cheng; David A Diamond; Allyson Fried; Thomas Kolon; Yegappan Lakshmanan; Pierre Williot; Sabrina Meyer; Theresa Meyer; Bradley Kropp; Natalie Nokoff; Blake Palmer; Alethea Paradis; Dix Poppas; Brian VanderBrink; Kristy J Scott Reyes; Amy Tishelman; Cortney Wolfe-Christensen; Elizabeth Yerkes; Larry L Mullins; Laurence Baskin Journal: J Pediatr Urol Date: 2020-06-01 Impact factor: 1.921
Authors: Caroline M Roberts; Christina M Sharkey; Dana M Bakula; Megan N Perez; Alexandria J Delozier; Paul F Austin; Laurence S Baskin; Yee-Ming Chan; Earl Y Cheng; David A Diamond; Allyson J Fried; Bradley Kropp; Yegappan Lakshmanan; Sabrina Z Meyer; Theresa Meyer; Natalie J Nokoff; Blake W Palmer; Alethea Paradis; Kristy J Scott Reyes; Amy Tishelman; Pierre Williot; Cortney Wolfe-Christensen; Elizabeth B Yerkes; Christopher Aston; Amy B Wisniewski; Larry L Mullins Journal: J Pediatr Psychol Date: 2020-10-01