Kassie D Flewelling1, Stephanie De Jesus Ayala2, Yee-Ming Chan3, Diane Chen4, Saakshi Daswani5, Jennifer Hansen-Moore6, V Rama Jayanthi7, Hillary M Kapa8, Leena Nahata9, Jaclyn L Papadakis10, Keeley Pratt11, Joseph R Rausch12, Hailey Umbaugh8, Vijaya Vemulakonda13, Canice E Crerand14, Amy C Tishelman3, Cindy L Buchanan15. 1. Children's Hospital Colorado, Aurora, CO, USA; Pediatric Urology Research Enterprise, Department of Pediatric Urology, Children's Hospital Colorado, Aurora, CO, USA. Electronic address: kassie.flewelling@ucdenver.edu. 2. Children's Hospital Colorado, Aurora, CO, USA; Department of Pediatrics, University of Colorado Denver Anschutz Medical Campus, Aurora, CO, USA. 3. Boston Children's Hospital, Boston, MA, USA; Harvard Medical School, Boston, MA, USA. 4. Pritzker Department of Psychiatry and Behavioral Health, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA; Department of Psychiatry & Behavioral Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA; Potocsnak Family Division of Adolescent Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA; Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA. 5. Boston Children's Hospital, Boston, MA, USA. 6. Department of Pediatric Psychology, Nationwide Children's Hospital, Columbus, OH, USA. 7. Departments of Pediatrics and Plastic Surgery, The Ohio State University College of Medicine, Columbus, OH, USA; Department of Urology, Nationwide Children's Hospital, Columbus, OH, USA. 8. Center for Biobehavioral Health, Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, OH, USA. 9. Center for Biobehavioral Health, Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, OH, USA; Department of Pediatrics, Division of Endocrinology, Nationwide Children's Hospital, Columbus, OH, USA. 10. Pritzker Department of Psychiatry and Behavioral Health, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA; Department of Psychiatry & Behavioral Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA. 11. The Ohio State University, College of Education and Human Ecology, Columbus, OH, USA. 12. The Abigail Wexner Research Institute at Nationwide Children's Hospital, USA; Department of Pediatrics, The Ohio State University College of Medicine, USA. 13. Children's Hospital Colorado, Aurora, CO, USA; Pediatric Urology Research Enterprise, Department of Pediatric Urology, Children's Hospital Colorado, Aurora, CO, USA; Division of Urology, Department of Surgery, University of Colorado Denver Anschutz Medical Campus, Aurora, CO, USA. 14. Departments of Pediatrics and Plastic Surgery, The Ohio State University College of Medicine, Columbus, OH, USA; Department of Pediatric Psychology, Nationwide Children's Hospital, Columbus, OH, USA; Center for Biobehavioral Health, Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, OH, USA. 15. Children's Hospital Colorado, Aurora, CO, USA; Pediatric Urology Research Enterprise, Department of Pediatric Urology, Children's Hospital Colorado, Aurora, CO, USA; Division of Urology, Department of Surgery, University of Colorado Denver Anschutz Medical Campus, Aurora, CO, USA; Division of Child and Adolescent Psychiatry, Department of Psychiatry, University of Colorado Anschutz Medical Campus, Aurora, CO, USA.
Abstract
BACKGROUND: Surgical intervention in youth with differences of sex development (DSD) is a controversial topic. Historically, evidence suggests that genital surgery in DSD is associated with mixed patient satisfaction. However, less is known about surgical outcomes under therapeutic advancements in the past several decades. OBJECTIVE: The purpose of the current study is to provide an updated and empirical qualitative examination of the surgical experiences and responses to care of adolescents and young adults (AYA) with DSD in order to fill this gap in the literature and inform patient care. METHODS: Qualitative interviews were conducted with 37 AYA (ages 12-26) with DSD. Interviews were transcribed, coded, and analyzed thematically. RESULTS: Three major themes were identified: 1) knowledge related to surgery; 2) surgical and medical experience; and 3) psychosocial factors related to surgery. Results demonstrated that most AYA were not involved in the decision to pursue surgery and were observed to have varying levels of knowledge regarding their surgeries. Most participants in the current study had received a DSD-related surgery and the majority described having positive surgical experiences and few regrets. Nonetheless, AYA described both medical and psychosocial challenges related to their surgeries and recoveries and offered feedback on ways to improve the surgical process. DISCUSSION: The current study provides a qualitative examination of the surgical experiences of 37 AYA with DSD. Findings highlight the importance of regular and ongoing communication with providers to improve knowledge related to surgery during the decision-making process as well as after surgical intervention. Results underscore the benefits of multidisciplinary teams and the value of patient handouts and decision aids in assisting AYA in the decision to pursue surgical intervention. Other specific recommendations for providers include increased patient privacy during genital exams, greater emphasis on psychoeducation and pain management strategies, and the use of behavioral health services to assist with challenges and social support. CONCLUSIONS: The decision to pursue surgical intervention in youth with DSD remains a complex and controversial issue, and more information regarding patients' perspectives on surgery is needed. The current study provides novel insights into patient experiences of surgical intervention and highlights the need for psychosocial support throughout the shared decision-making process.
BACKGROUND: Surgical intervention in youth with differences of sex development (DSD) is a controversial topic. Historically, evidence suggests that genital surgery in DSD is associated with mixed patient satisfaction. However, less is known about surgical outcomes under therapeutic advancements in the past several decades. OBJECTIVE: The purpose of the current study is to provide an updated and empirical qualitative examination of the surgical experiences and responses to care of adolescents and young adults (AYA) with DSD in order to fill this gap in the literature and inform patient care. METHODS: Qualitative interviews were conducted with 37 AYA (ages 12-26) with DSD. Interviews were transcribed, coded, and analyzed thematically. RESULTS: Three major themes were identified: 1) knowledge related to surgery; 2) surgical and medical experience; and 3) psychosocial factors related to surgery. Results demonstrated that most AYA were not involved in the decision to pursue surgery and were observed to have varying levels of knowledge regarding their surgeries. Most participants in the current study had received a DSD-related surgery and the majority described having positive surgical experiences and few regrets. Nonetheless, AYA described both medical and psychosocial challenges related to their surgeries and recoveries and offered feedback on ways to improve the surgical process. DISCUSSION: The current study provides a qualitative examination of the surgical experiences of 37 AYA with DSD. Findings highlight the importance of regular and ongoing communication with providers to improve knowledge related to surgery during the decision-making process as well as after surgical intervention. Results underscore the benefits of multidisciplinary teams and the value of patient handouts and decision aids in assisting AYA in the decision to pursue surgical intervention. Other specific recommendations for providers include increased patient privacy during genital exams, greater emphasis on psychoeducation and pain management strategies, and the use of behavioral health services to assist with challenges and social support. CONCLUSIONS: The decision to pursue surgical intervention in youth with DSD remains a complex and controversial issue, and more information regarding patients' perspectives on surgery is needed. The current study provides novel insights into patient experiences of surgical intervention and highlights the need for psychosocial support throughout the shared decision-making process.
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