Whether or not to surgically ?correct? ambiguous genitalia in young children is an area of pediatric medicine that is highly controversial. Suboptimal outcomes such as poor cosmesis and sexual dysfunction following outdated surgical procedures have driven intense controversy in the medical community over how, or if, surgery should be used in the treatment of young children with ambiguous genitalia. To help resolve this debate, a prospective study of long-term outcomes of current surgical procedures, including complication rates associated with these procedures, is needed among individuals who receive masculinizing or feminizing surgery during early childhood. Additionally, studies of parents who decide to proceed, or not, with such surgeries for their young child are necessary to understand how these controversial decisions impact parents? reactions to their child. Finally, better understanding of cognitive, behavioral, and social development in children born with ambiguous genitalia, including identification of novel markers for predicting gender development, is needed. The overall goal of this proposal is to assess the outcomes of modern surgical techniques with a consideration of the psychological outcomes of affected children and their parents. 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 span 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.
The benefits and risks of modern approaches to genitoplasty in children with ambiguous genitalia due to a Disorder of Sex Development (DSD) is clearly lacking from a public health perspective. This information is necessary so that parents can provide true informed consent for their child?s medical and surgical care, as well as understand how these procedures might affect their child?s long-term adjustment. Additionally, pediatric surgeons require such information so that up-to-date standards of care can be developed for children with ambiguous genitalia. We propose to prospectively study long-term cosmetic and urinary function outcomes of children following feminizing or masculinizing surgeries as well as the psychological adjustment of their child. We will also assess parent psychological adjustment to help inform future interventions for parents who do not cope well. This project will generate important new information that can translate into improvement in surgical care and outcomes for affected children, as well as provide information necessary to recommend for, or against, genitoplasty for young children with DSD.
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