Psychological adjustment and sexual development of adolescents with disorders of sex development.
OBJECTIVE
Disorders of sex development (DSD) are a heterogeneous group of congenital conditions characterized by an atypical development of chromosomal, gonadal, or anatomical sex. Particularly at the time of expected puberty, adolescents with DSD may become aware of being different from peers. This study explores the effect of DSD on psychosocial well-being and sexual development.


METHODS
We interviewed 60 adolescents aged 13-16 years with a DSD. To measure health-related quality of life, mental health, and body image, we used standardized instruments and additional questions related to sexuality and coping with DSD. Reference and control data were available from the German Health Survey for Children and Adolescents (Kiggs) and from a secondary school survey.


RESULTS
The general psychological well-being of adolescents with DSD was not impaired. However, outcomes related to adolescent developmental tasks like sexual activities demonstrated impaired participation, especially girls with DSD reported fewer sexual activities than female controls. Adolescents who needed hormonal treatment to induce puberty reported impaired well-being in nearly all outcomes in contrast to those who entered puberty spontaneously.


CONCLUSIONS
Interdisciplinary health care teams should focus on the pressure of conformity and openly discuss it with the adolescent in context of treatment decisions. Furthermore, special counseling concerning sexuality and coping with the condition in daily life is needed.
Department for Pediatric and Adolescent Medicine, University Clinic Schleswig-Holstein, Campus Luebeck, Germany.
Eva
E
Kleinemeier
Martina
M
Jürgensen
Anke
A
Lux
Pia-Marie
PM
Widenka
Ute
U
Thyen
D000223:Adaptation, Psychological; D000293:Adolescent; D012734:Disorders of Sex Development / Q000523:psychology*; D005260:Female; D005858:Germany; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008603:Mental Health; D011788:Quality of Life; D012725:Sexual Behavior