TY - JOUR
T1 - Psychological adjustment and sexual development of adolescents with disorders of sex development
AU - Kleinemeier, Eva
AU - Jürgensen, Martina
AU - Lux, Anke
AU - Widenka, Pia Marie
AU - Thyen, Ute
N1 - Funding Information:
The authors are grateful to the adolescents and their parents who participated in this study; without their openness and commitment to talk about very personal aspects of their life the study would not have been possible. Special thanks go to all cooperating physicians of the DSD Network Working Group willing to help with recruitment and clinical data (Lux et al, 2009). The authors thank the experts who supported the development of the medical questionnaire and the members of the advisory board ( http://www.netzwerk-is.de ), and the interviewers in Germany, Austria, and Switzerland. The study was funded by the German Ministry of Education and Science ( FKZ 01GM0311 ).
Copyright:
Copyright 2011 Elsevier B.V., All rights reserved.
PY - 2010/11
Y1 - 2010/11
N2 - Purpose: 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.
AB - Purpose: 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.
UR - http://www.scopus.com/inward/record.url?scp=78049251776&partnerID=8YFLogxK
U2 - 10.1016/j.jadohealth.2010.03.007
DO - 10.1016/j.jadohealth.2010.03.007
M3 - Journal articles
C2 - 20970081
AN - SCOPUS:78049251776
SN - 1054-139X
VL - 47
SP - 463
EP - 471
JO - Journal of Adolescent Health
JF - Journal of Adolescent Health
IS - 5
ER -
