A 15–20-year follow-up of mental health, psychosocial functioning and quality of life in a single center sample of individuals with differences in sex development

Abstract

Background: The aim of the study was to present metal health, psychosocial functioning and quality of life (QoL) of children and adolescents with a difference in sex development (DSD) from their first visit in the newly established multidisciplinary team in 2002–2004 in Norway. A secondary aim was to explore mental health, psychosocial functioning and QoL in the same cohort patient’s as for today and finally explore any childhood predictors for these outcomes in adulthood.

Methods: The first part of the study took place in 2002–2004 in a mixed cohort of children and adolescents born with a DSD in 1982–2002, compared to a healthy comparison group. This part involved semi-structured interviews and self-reported and proxy-reported questionnaires. The second part of the study is a longitudinal study of the same participants 15–20 years later (2018–2020).

Results: The participants at baseline of the study consisted of 33 patients; 24 assigned females (congenital adrenal hyperplasia, androgen insensitivity syndrome, gonadal dysgenesis and ovotesticular DSD) and nine assigned males; all with a hypospadias diagnosis. Significant differences were found for behavioral and emotional problems between groups, 46, XX females with significant higher total scores on YSR (49.43 + 24.17, p = .047); 46, XY females (21.00 + 12.04, p = .032); and higher internalizing problems scores (YSR) in 46, XX females (16.57 + 9.74), compared with the 46, XY females (5.60 + 5.32, p = .047). A positive association between QoL of the participants in adulthood and PedsQL’ social function (r = .657, p = .020) and psychosocial function in childhood (r = .596, p = .041) was found.

Conclusions: In summary, this study demonstrated that adolescents assigned females with DSD might have more psychiatric problems and a poorer degree of psychosocial functioning compared to a healthy comparison group. As we do find an association with these problems in adolescence and later adult QoL, it is of great importance to respond to these behaviors in early life.