ESPE Abstracts (2016) 86 P-P1-379

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

Elena Benneckea, Ute Thyenb, Annette Grütersa, Anke Luxc & Birgit Köhlera


aDepartment of Paediatrics, Division of Endocrinology and Diabetology, Charité, University Medicine, Berlin, Germany; bHospital for Children and Adolescents, University of Lübeck, Lübeck, Germany; cInstitute for Biometrics and Medical Informatics, Otto-von-Guericke University, Magdeburg, Germany


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 in individuals with DSD vary greatly.

Objective and hypotheses: This multicentre clinical evaluation study was part of a German network related to DSD funded by the German Ministry of Science and Education (BMBF 2003–2007).

Method: To assess health-related quality of life (HRQoL), as well as psychological wellbeing, the Short Form Health Survey (SF-36) and the Brief Symptom Inventory (BSI) were used.

Results: Participants included 110 adults with DSD. Participants were classified into five groups: f-CAH, f-XY-pa, f-XY-na, m-XY-pa, and other gender. We found a trend of lowered mental HRQoL and significant higher physical HRQoL for participants as compared to a norm. The high physical HRQoL especially applied to females with androgen effect and XY Karyotype. Participants reported significantly higher psychological distress compared to the norm. Forty-seven participants (43%) reported distress in a clinically relevant range on the BSI.

Conclusion: Although there is a high physical HRQoL participants reported significant impaired psychological wellbeing. However, a selection bias cannot be ruled out and social desirability bias must be considered. Specialized interdisciplinary care should focus in particular on psychological issues to ensure overall good health and well-being.

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