Whether or not to surgically correct ambiguous genitalia to be more female- or male-typical with genitoplasty is an area of pediatric medicine that is highly controversial. Suboptimal outcomes such as poor post-surgical cosmesis and sexual dysfunction following outdated surgical procedures have driven intense controversy in the medical community over how, or if, genitoplasty should be used in the treatment of young children with ambiguous genitalia. To resolve this debate, a prospective study of outcomes of current genitoplasty procedures, including complication rates associated with these procedures, is needed of individuals who receive masculinizing or feminizing surgery during early childhood. Additionally, studies of parents who decide to proceed, or not, with genitoplasty for their young child are necessary to understand how these controversial decisions impact parents' reactions to surgical outcomes for their child. The overall goal of this proposal is to assess the outcomes of modern genitoplasty techniques with a consideration of the psychological outcome of parents who make the decisions to proceed with genital surgery for their child. This information is crucial for physicians to provide guidance to parents regarding the optimal approach for the management of ambiguous genitalia in young children, including the possibility that no surgery is best. The interdisciplinary group of clinicians and researchers included in the proposed studies spans the fields of psychology, statistics, pediatric endocrinology, and pediatric urology. The collective experience of our group optimizes our ability to translate findings from the proposed studies to a clinical setting in a timely manner.

Public Health Relevance

Information about the benefits and risks of modern approaches to genitoplasty in children with ambiguous genitalia due to Disorders of Sex Development (DSD) is lacking. We propose to prospectively study short-term cosmetic and urinary function outcomes of children following feminizing or masculinizing surgeries. Additionally, studies of how parents make decisions about if and when to have genitoplasty for their child, as well as the incidence of decisional regret after the fact, will be conducted.

Agency
National Institute of Health (NIH)
Institute
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Type
Research Project (R01)
Project #
7R01HD074579-05
Application #
9337207
Study Section
Kidney, Nutrition, Obesity and Diabetes (KNOD)
Program Officer
Freund, Lisa S
Project Start
2013-07-05
Project End
2018-04-30
Budget Start
2016-05-01
Budget End
2017-04-30
Support Year
5
Fiscal Year
2016
Total Cost
$289,942
Indirect Cost
$94,035
Name
University of Oklahoma Health Sciences Center
Department
Urology
Type
Schools of Medicine
DUNS #
878648294
City
Oklahoma City
State
OK
Country
United States
Zip Code
73104
Sharkey, Christina M; Bakula, Dana M; Wolfe-Christensen, Cortney et al. (2018) Parent-Rated Severity of Illness and Anxiety among Caregivers of Children Born with a Disorder of Sex Development Including Ambiguous Genitalia. Horm Res Paediatr :1-6
Bernabé, K J; Nokoff, N J; Galan, D et al. (2018) Preliminary report: Surgical outcomes following genitoplasty in children with moderate to severe genital atypia. J Pediatr Urol 14:157.e1-157.e8
Nokoff, N J; Palmer, B; Mullins, A J et al. (2017) Prospective assessment of cosmesis before and after genital surgery. J Pediatr Urol 13:28.e1-28.e6
Wolfe-Christensen, Cortney; Wisniewski, Amy B; Mullins, Alexandria J et al. (2017) Changes in levels of parental distress after their child with atypical genitalia undergoes genitoplasty. J Pediatr Urol 13:32.e1-32.e6
Wisniewski, Amy B (2017) Psychosocial implications of disorders of sex development treatment for parents. Curr Opin Urol 27:11-13
Suorsa, Kristina I; Mullins, Alexandria J; Tackett, Alayna P et al. (2015) Characterizing Early Psychosocial Functioning of Parents of Children with Moderate to Severe Genital Ambiguity due to Disorders of Sex Development. J Urol 194:1737-42
Wisniewski, Amy B; Espinoza-Varas, Blas; Aston, Christopher E et al. (2014) Otoacoustic emissions, auditory evoked potentials and self-reported gender in people affected by disorders of sex development (DSD). Horm Behav 66:467-74