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The psychosocial impact of Klinefelter syndrome and factors influencing quality of life.
MedLine Citation:
PMID:  21546843     Owner:  NLM     Status:  Publisher    
Abstract/OtherAbstract:
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 much poorer for the study population than for the general male population. Individuals diagnosed later in life reported many of the same symptoms as those diagnosed at younger ages. Employment status, social support, and phenotypic features were the strongest predictors of psychosocial outcomes. Age at diagnosis was not as influential because it did not correlate with phenotypic severity score. CONCLUSION:: This is the first quantitative study to show Klinefelter syndrome has a significant personal impact. Men diagnosed with Klinefelter syndrome later in life reported similar difficulties as those at younger ages, suggesting that they would benefit from early detection and intervention. Understanding factors influencing this can assist in providing adequate services to individuals with Klinefelter syndrome, their partners, families, and the health professionals caring for them.
Authors:
Amy S Herlihy; Robert I McLachlan; Lynn Gillam; Megan L Cock; Veronica Collins; Jane L Halliday
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Publication Detail:
Type:  JOURNAL ARTICLE     Date:  2011-5-4
Journal Detail:
Title:  Genetics in medicine : official journal of the American College of Medical Genetics     Volume:  -     ISSN:  1530-0366     ISO Abbreviation:  -     Publication Date:  2011 May 
Date Detail:
Created Date:  2011-5-6     Completed Date:  -     Revised Date:  -    
Medline Journal Info:
Nlm Unique ID:  9815831     Medline TA:  Genet Med     Country:  -    
Other Details:
Languages:  ENG     Pagination:  -     Citation Subset:  -    
Affiliation:
From the 1Department of Public Health Genetics, Murdoch Childrens Research Institute, Parkville; 2Department of Obstetrics and Gynaecology, Monash University, Clayton; 3Andrology Australia, Clayton; 4Department of Clinical Andrology, Prince Henry's Institute of Medical Research, Clayton; 5Centre for Health and Society, The University of Melbourne, Parkville; 6Children's Bioethics Centre, The Royal Children's Hospital, Parkville; and 7Department of Paediatrics, The University of Melbourne, Parkville, Victoria, Australia.
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