Journal article

The psychosocial impact of Klinefelter syndrome and factors influencing quality of life

Amy S Herlihy, Robert I McLachlan, Lynn Gillam, Megan L Cock, Veronica Collins, Jane L Halliday

Genetics in Medicine | NATURE PUBLISHING GROUP | Published : 2011

Abstract

PURPOSE: There is considerable information regarding the medical and cognitive aspects of Klinefelter syndrome yet little research regarding its psychosocial impact. This study investigates the personal impact of Klinefelter syndrome and the influence of age at diagnosis, clinical, social, and demographic factors on adult quality of life outcomes. METHODS: Men from across Australia, diagnosed with KS at different ages, were recruited through multiple sources. Participants completed a questionnaire assessing subjective well-being, body image, self-esteem, mental health, social support, and general health. RESULTS: Eighty-seven individuals self-completed the questionnaire. All outcomes were mu..

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Grants

Funding Acknowledgements

This work was supported by the National Health and Medical Research Council of Australia, Andrology Australia, Monash University, and Bayer Schering Pharma, who provided support for costs associated with the study in the form of an unrestricted educational grant. The authors thank all the study participants who shared their experiences so willingly, and the doctors and other health professionals who gave their time to assist in recruitment. Obioha Ukoumunne provided invaluable statistical advice.