Impact of Disorders of Sex Development on Egyptian Parents and Factors Affecting Them

Abstract

Background: Disorders of sex development (DSD) are a category of congenital diseases characterized by aberrant internal and external genital structure development. Parental adjustment and functioning have been highlighted as being at risk in this environment. Objective(s): To compare the impact of children with XX, DSD and XY, DSD on their families, and factors influencing the burden on these parents. Methods: A cross-sectional study was conducted on parents of all 72 children with DSD who were diagnosed and followed up regularly between January and May 2021 at Alexandria University Children's Hospital's Endocrinology Outpatient Clinic, Egypt. The Pediatric Quality of Life Inventory™ (PedsQL™) Family Impact Module (PedsQLTM FIM) (Arabic version) version 2 was used for assessing family impact and economic burden. Results: The current study included 72 children with DSD, 57 diagnosed with 46,XX, and 15 with 46,XY. The mean age of studied children was 7.93 ± 4.03 years. Parents of children with XX, DSD had lower scores (reduced family function) on all categories (except for family relationships) of the PedsQL™ FIM version 2 questionnaire, with no statistically significant difference. The worry domain had the lowest mean scores, with 33.86 ± 21.59 in children with XX,DSD and 45.33 ± 29.79 in those with XY,DSD. Univariate and correlation analyses found that having a sibling with the same condition had a statistically significant (r=-0.359,p= 0.002)negative impact on the family. Conclusion: XX,DSD had more negative impact on parents than XY,DSD, especially in the worry domain. Additionally, having siblings with similar conditions exhibited a strong correlation to creating a negative influence.

Keywords

• disorder of sex development
• family impact
• pedsql
• family impact module