ESPE Abstracts (2019) 92 P1-269

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

Sebastian Franik1, Kathrin Fleischer1, Barbara Kortmann1, Nike Stikkelbroek1, Kathleen D'Hauwers1, Joanna In't Hout1, Claire Bouvattier2, Jolanta Slowikowska-Hilczer3, Solange Grunenwald4, Tim van de Grift5, Audrey Cartault6, Annette Richter-Unruh7, Nicole Reisch8, Ute Thyen9, Hedi Claahsen - van der Grinten1


1Radboudumc, Nijmegen, Netherlands. 2Bicêtre Hospital, Paris, France. 3Medical University of Lodz, Lodz, Poland. 4Centre Hospitalier Universitaire de Toulouse, Toulouse, France. 5VU medisch centrum, Amsterdam, New-Caledonia. 6hospital des enfants, Toulouse, France. 7University, Muenster, Germany. 8University Hospital Munich, Munich, Germany. 9Sozialpädiatrisches Zentrum Lübeck, Lübeck, Germany


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.

Material and Methods: Participants were recruited in 14 clinical study centres in 6 European countries which participated in the European DSS life study. 218 men with KS were eligible for inclusion. Male normative data from the European Social Surveys (ESS) was used for comparison.

Clinical data, related to quality of life, social activity and health status were collected.

Results: The WHO physical domain score of men with KS (66.2±19.4; n=206) was significantly lower compared to the healthy reference population (76.5±16.2; n=1324; P<0.001). The WHO psych domain score of men with KS (n=206) was significantly lower (63.0±17.9) compared to the healthy reference population (67.8±15.6; n=1324; P<0.05). The WHO environment domain score of men with KS (69.7±14.9; n=206) was comparable to the healthy reference population (70.52±20.7; n=1324; P=0.5). The WHO social domain score of men with KS (59.1±22.1; n=206) was significantly lower compared to the healthy reference population (68.2±13.8; n=1324; P<0.001). Men with KS reported less engagement in social activities compared to others of the same age (33% vs 49%, P<0.001), and had less intimate friendships (P<0.001). The presence of somatic or mental health problems led to a significantly worse QOL.

Conclusion: Quality of life is significantly impaired in men with Klinefelter Syndrome, most likely due to the presence of somatic and mental health problems. A multidisciplinary approach of healthcare providers might help to provide adequate counselling and treatment to improve quality of life.