title: The psychosocial impact of Klinefelter syndrome and factors influencing quality of life.
abstract: OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.affiliation: Department of Public Health Genetics, Murdoch Childrens Research Institute, Royal Children's Hospital, Flemington Road, Parkville, Victoria 3052, Australia. amy.herlihy@mcri.edu.au
authors.forename: Amy S
authors.initials: AS
authors.lastname: Herlihy
authors.forename: Robert I
authors.initials: RI
authors.lastname: McLachlan
authors.forename: Lynn
authors.initials: L
authors.lastname: Gillam
authors.forename: Megan L
authors.initials: ML
authors.lastname: Cock
authors.forename: Veronica
authors.initials: V
authors.lastname: Collins
authors.forename: Jane L
authors.initials: JL
authors.lastname: Halliday
mesh_terms: D000328:Adult; D000368:Aged; D001315:Australia; D006306:Health Surveys / Q000706:statistics & numerical data; D006801:Humans; D007713:Klinefelter Syndrome / Q000523:psychology*; D016014:Linear Models; D008297:Male; D008875:Middle Aged; D015999:Multivariate Analysis; D011788:Quality of Life / Q000523:psychology*; D012923:Social Class; D011795:Surveys and Questionnaires; D055815:Young Adult