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.
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.
Authors: Michael H Hsieh; Hadley M Wood; Brad E Dicianno; Nienke P Dosa; Veronica Gomez-Lobo; Tej K Mattoo; Rosalia Misseri; Jenna M Norton; Kathleen J Sawin; Peter Scal; James E Wright; Robert A Star; Tamara Bavendam Journal: Urology Date: 2017-02-02 Impact factor: 2.649
Authors: Ariane Liedmeier; David Jendryczko; Marion Rapp; Robert Roehle; Ute Thyen; Baudewijntje P C Kreukels Journal: Compr Psychoneuroendocrinol Date: 2021-09-24
Authors: Martina Jürgensen; Anke Lux; Sebastian Benedikt Wien; Eva Kleinemeier; Olaf Hiort; Ute Thyen Journal: Eur J Pediatr Date: 2014-01-28 Impact factor: 3.183
Authors: Arianne Dessens; Guilherme Guaragna-Filho; Andreas Kyriakou; Jillian Bryce; Caroline Sanders; Agneta Nordenskjöld; Marta Rozas; Violeta Iotova; Annastasia Ediati; Anders Juul; Maciej Krawczynski; Olaf Hiort; S Faisal Ahmed Journal: BMJ Paediatr Open Date: 2017-08-31