hrp0086wg1.5 | ESPE Disorders of Sex Development Working Group (DSD) | ESPE2016

DSD Nomenclature, a Report of the Patients Views in the dsd-LIFE Study

Thyen Ute

Background: A decade ago the ESPE/LWSPE “Consensus Group on management of intersex conditions” proposed the new term Disorders of Sex Development and its acronym DSD as an umbrella term for congenital conditions in which the development of chromosomal, gonadal, or anatomical sex is atypical. The Consensus Group intended to replace a potentially stigmatizing vocabulary; however, the new nomenclature attracted criticism.Objectiv...

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 ...

hrp0092p1-269 | Sex Differentiation, Gonads and Gynaecology or Sex Endocrinology (1) | ESPE2019

The Impact of Klinefelter Syndrome on Quality of Life – a Multicentre Study

Franik Sebastian , Fleischer Kathrin , Kortmann Barbara , Stikkelbroek Nike , D'Hauwers Kathleen , In't Hout Joanna , Bouvattier Claire , Slowikowska-Hilczer Jolanta , Grunenwald Solange , van de Grift Tim , Cartault Audrey , Richter-Unruh Annette , Reisch Nicole , Thyen Ute , Claahsen - van der Grinten Hedi

Background: Klinefelter syndrome (KS) is associated with an increased risk of lower socioeconomic status and a higher risk for morbidity and mortality, which may have a significant impact on quality of life (QOL). The objective of this study is to investigate QOL in a large European cohort of men with KS and associate QOL with socioeconomic status, prevalence of somatic disease and mental illness, testosterone supplementation and age of diagnosis.<p class=...

hrp0084wg3.5 | DSD | ESPE2015


Kohler Birgit , Arlt Wiebke , Bouvattier Claire , de la Perriere Aude Brac , Gaye Claire-Lise , Claahsen-van der Grinten Hedi , Cohen-Kettenis Peggy , Nordenstrom Anna , Pienkowski Catherine , Richter-Unruh Annette , Slowikowska-Hilczer Jolanta , Paris Francoise , Szarras-Capnik Maria , Reisch Nicole , Thyen Ute , Wiesemann Claudia

DSD-LIFE is a comprehensive clinical outcome study investigating medical, surgical, psychosocial, and ethical issues to improve treatment and care of patients with the different diagnoses included in the umbrella term disorders/differences of sex development (DSD). The multidisciplinary DSD-LIFE consortium consists of 15 experienced European scientists in the areas endocrinology, psychology, surgery, gynaecology, urology, and ethics. In 2013 the study protocol and the online d...