Disorders of Sex Development: Lessons to be Learned from Studies of Spina Bifida and Craniofacial Conditions

Abstract

The purpose of this review is to discuss research methods and clinical management strategies employed with other conditions (i. e., spina bifida and craniofacial conditions) and how these methods and strategies could be applied to youth with disorders of sex development (DSD). The review focuses specifically on the potential overlap between DSD and these other conditions across the following 3 areas: (1) developmentally-oriented theories that underlie the research base for chronic physical conditions; (2) research designs and methodological features that have proved fruitful in these areas; and (3) the potential applicability to DSD of clinical management practices for youth with craniofacial conditions.

Characterizing Early Psychosocial Functioning of Parents of Children with Moderate to Severe Genital Ambiguity due to Disorders of Sex Development

“…Incorporating family based interventions and psychological supports into regular care for families of children with DSD could act to attenuate psychological symptomatology in this population. 17 …”

Introduction to the Special Section: Disorders of Sex Development

“…The Consensus Statement noted the proven value for positive psychological adjustment of openness as learned from different conditions and circumstances, including pediatric HIV (American Academy of Pediatrics, 1999). The argument has been made that lessons relevant to DSD clinical research and health-care delivery can potentially be learned from studies of peer relations in physically typical children (Bukowski, McCauley, & Mazur, 2015) and from children with other congenital conditions (Holmbeck & Aspinall, 2015). Progress in DSD research will benefit greatly when investigators from other areas of child development (typical and atypical) and other social scientists direct their methodologies and research strategies toward the issues confronted by these patients and their families.…”

“All Eyes on Me”: A Qualitative Study of Parent and Patient Experiences of Multidisciplinary Care in Craniofacial Conditions

“…A Congenital craniofacial anomaly (CFA) is a term used to describe a range of conditions affecting the form and function of the neck and head. Prevalence rates and characteristics vary widely, typically affecting the skull, middle face, jaws, cheekbones, eyes, respiratory or feeding tract, and/or ears (Holmbeck and Aspinall, 2015). Depending on the condition and associated features, early surgical intervention may be necessary, ranging from a single operation early in life to repeated surgical interventions throughout childhood and into adulthood for the more severe CFAs (Feragen and Stock, 2017).…”

“…At its foundation, the overall aim of an MDT is to present a unified voice in the patient’s treatment plan by increasing multidisciplinary communication and cooperation and deal with the complexity of treatment processes (Buchanan et al, 2017). The organizations of MDTs are institutional specific, but the goals are the same and as follows: optimal; rapid; and efficient patient-centered evaluation, diagnosis, and treatment (Holmbeck and Aspinall, 2015; Heineman et al, 2017).…”