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Longitudinal Study of Individuals with Differences in Sex Development: A 15-20-year Follow-Up of Mental Health, Psychosocial Functioning and Quality of Life in a Cohort of Norwegian Patients.


 Our main aim was to explore any associations in mental health, psychosocial functioning and quality of life (QoL) between childhood, adolescence, and adulthood in the same cohort of patients with a difference in sex development (DSD) born from four decades ago up until early 2000. 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 to 2002, compared to a control 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). The participants in part 1 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. A key finding was more psychopathology in the adolescents with a DSD, and females with a 46, XX karyotype had more psychosocial problems compared to the 46, XY females. Two of the 16 patients in the follow-up had performed gender reassignment. Less than half of the female participants reported a heterosexual orientation. Another important finding was a correlation between psychosocial function in childhood with later adult QoL. As we do find a correlation with psychosocial problems in adolescence and later adult QoL, it is of great importance to respond to these behaviors in early life and to have a psychological aspect in the follow up.