Surgical experiences in adolescents and young adults with differences of sex development: A qualitative examination

被引:5
作者
Flewelling, Kassie D. [1 ,2 ]
Ayala, Stephanie De Jesus [1 ,3 ]
Chan, Yee-Ming [4 ,5 ]
Chen, Diane [6 ,7 ,8 ,9 ]
Daswani, Saakshi [4 ]
Hansen-Moore, Jennifer [12 ]
Jayanthi, V. Rama [10 ,11 ,13 ]
Kapa, Hillary M. [14 ]
Nahata, Leena [14 ,15 ]
Papadakis, Jaclyn L. [6 ,7 ]
Pratt, Keeley [16 ]
Rausch, Joseph R. [10 ,19 ]
Umbaugh, Hailey [14 ]
Vemulakonda, Vijaya [1 ,2 ,17 ]
Crerand, Canice E. [10 ,11 ,12 ,14 ]
Tishelman, Amy C. [4 ,5 ]
Buchanan, Cindy L. [1 ,2 ,17 ,18 ]
机构
[1] Childrens Hosp Colorado, Aurora, CO 80045 USA
[2] Childrens Hosp Colorado, Dept Pediat Urol, Pediat Urol Res Enterprise, Aurora, CO USA
[3] Univ Colorado Denver, Dept Pediat, Anschutz Med Campus, Aurora, CO USA
[4] Boston Childrens Hosp, Boston, MA USA
[5] Harvard Med Sch, Boston, MA 02115 USA
[6] Ann & Robert H Lurie Childrens Hosp Chicago, Pritzker Dept Psychiat & Behav Hlth, Chicago, IL 60611 USA
[7] Northwestern Univ, Dept Psychiat Behav Sci, Feinberg Sch Med, Chicago, IL 60611 USA
[8] Ann & Robert H Lurie Childrens Hosp Chicago, Potocsnak Family Div Adolescent Med, Chicago, IL 60611 USA
[9] Northwestern Univ, Dept Pediat, Feinberg Sch Med, Chicago, IL 60611 USA
[10] Ohio State Univ, Coll Med, Dept Pediat, Columbus, OH 43210 USA
[11] Ohio State Univ, Coll Med, Dept Plast Surg, Columbus, OH 43210 USA
[12] Nationwide Childrens Hosp, Dept Pediat Psychol, Columbus, OH USA
[13] Nationwide Childrens Hosp, Dept Urol, Columbus, OH USA
[14] Nationwide Childrens Hosp, Ctr Biobehav Hlth, Abigail Wexner Res Inst, Columbus, OH USA
[15] Nationwide Childrens Hosp, Div Endocrinol, Dept Pediat, Columbus, OH USA
[16] Ohio State Univ, Coll Educ & Human Ecol, Columbus, OH 43210 USA
[17] Univ Colorado Denver, Div Urol, Dept Surg, Anschutz Med Campus, Aurora, CO USA
[18] Univ Colorado, Div Child & Adolescent Psychiat, Dept Psychiat, Anschutz Med Campus, Aurora, CO USA
[19] Nationwide Childrens Hosp, Abigail Wexner Res Inst, Columbus, OH USA
关键词
Disorders of sex development; Intersex; Surgery; Qualitative; CONGENITAL ADRENAL-HYPERPLASIA; DEVELOPMENT DSD; DECISION AIDS; DISORDERS; SURGERY;
D O I
10.1016/j.jpurol.2022.02.028
中图分类号
R72 [儿科学];
学科分类号
100202 ;
摘要
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 37AYAwith 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.
引用
收藏
页码:353.e1 / 353.e10
页数:10
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