Parent-Reported Psychosocial Functioning in Youth with DSD and Perceptions of Interdisciplinary Care
Jennifer L. Litteral, MA1, Canice E. Crerand, PhD1, Hillary M. Kapa, MPH1, Leena Nahata, MD1, Justin A. Indyk, MD/PhD1, Yee-Ming Chan, MD/PhD2, Amy C. Tishelman, PhD2, Venkata R. Jayanthi, MD1, Jennifer Hansen-Moore, PhD1.
1Nationwide Children's Hospital, Columbus, OH, USA, 2Boston Children's Hospital, Boston, MA, USA.
Children with differences of sex development (DSD) conditions associated with atypical genitalia and/or chromosomal discordance with anatomy are at risk for psychosocial problems. These risks are related to treatment decision-making, disclosure about the condition, appearance differences, and potential for social difficulties and stigma. Thus, interdisciplinary care including psychosocial support has been recommended. However, studies have not typically evaluated psychosocial risks in youth with DSD in comparison to non-affected youth, nor have studies examined parent perceptions of the psychosocial care offered by interdisciplinary teams. To address these gaps, this study evaluated parent-report of psychosocial functioning in a sample of children with DSD in comparison to a group of non-affected children. Parent perceptions of psychosocial services offered as part of an interdisciplinary DSD team at a large pediatric academic center were also assessed.
Materials & Methods
Thirty-two parents of children with DSD (mean age: 6.6 years; 68.8% male) and 113 parents of healthy children (mean age: 5.9 years; 48.7% male) completed the Child Behavior Checklist (CBCL), a standardized questionnaire that assesses internalizing (e.g., anxiety) and externalizing (e.g., aggression) problems. Parents of healthy children were recruited from center employees. The most common DSD diagnoses were: 46XY DSD, partial androgen insensitivity syndrome, and congenital adrenal hyperplasia. Parents of children with DSD also completed a questionnaire about their perceptions of psychosocial services (e.g., counseling); these services had been available since 2013. Parents indicated if they had received these services (yes/no), if these services had been helpful (yes/no), and if not received, whether this was a service they would have desired.
Parents of children with DSD reported significantly (p < 0.01) greater internalizing symptoms on the CBCL for their children compared to parents of healthy children; 16% of children with DSD fell within the clinically significant range on this subscale vs. 2% of the non-affected children (p < 0.05). On the parent perception questionnaire, the most commonly received services included: having someone to debrief with them after the medical visit (94%); help with defining DSD-related terms (75%); care coordination (75%); and connection to resources (69%). Mental health services were received by 44%, and fertility information was received by 31%; among those who had not received these services, approximately two-thirds would have liked to have had these specific services available. Overall, psychosocial services were rated as being helpful by the majority of parents (86-100%).
Parents of children with DSD report greater internalizing symptoms in their children compared to parents of non-affected youth. Parents rate psychosocial services provided as part of interdisciplinary teams as being particularly helpful although there is variation in services received. More families may benefit from mental health and fertility-related support. These findings underscore the importance of interdisciplinary care with the inclusion of mental health providers for youth with DSD and their families.
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