hrp0086p1-p379 | Gonads & DSD P1 | ESPE2016

Health-Related Quality of Life and Psychological Wellbeing in Adults with Diverse Sex Development

Bennecke Elena , Thyen Ute , Gruters Annette , Lux Anke , Kohler Birgit

Background: Rare congenital conditions with incongruence of chromosomal, gonadal, and phenotypic sex have been summarized as disorders of sex development (DSD). Included in DSD are conditions with diverse genetic etiology, varying levels of prenatal androgen effects, phenotypes, and subsequently, different medical treatments. Quality of life (QoL) and psychological wellbeing are indicators of successful psychosocial adaptation to the conditions. Studies addressing these issues...

hrp0082p1-d3-101 | Sex Development | ESPE2014

Subjective Need for Psychological Support in Parents of Children with dsd: Results from the German Clinical Evaluation Study

Bennecke Elena , Werner-Rosen Knut , Krude Heiko , Thyen Ute , Lux Anke , Kleinemeier Eva , Jurgensen Martina , Kohler Birgit , Group DSD Network Working

Introduction: The diagnosis of a disorder/difference of sexual development (dsd) is an exceptional psychosocial situation. As the diagnosis is often made in childhood, the parents are the primary communication partners. In some cases, the impossibility of immediate sex determination of the child can be a traumatic experience with a negative impact on the relationship between the parents and the child, the couple and members of the entire family. It has been recommended by the ...