title: Factors associated with adaptation to Klinefelter syndrome: the experience of adolescents and adults.
abstract: OBJECTIVE
  The purpose of this study was to understand the impact of living with Klinefelter syndrome (XXY) as an adolescent or an adult and to examine the factors that contribute to adaptation.
  
  
  METHODS
  Individuals (n = 310) aged 14-75 years with self-reported XXY were recruited from online support networks to complete a self-administered survey. Perceived consequences, perceived severity, perceived stigma, and coping were measured and evaluated as correlates of adaptation.
  
  
  RESULTS
  The use of problem-focused coping strategies was positively correlated with adaptation (p < 0.01) and age was negatively correlated with adaptation (p < 0.05).
  
  
  CONCLUSIONS
  The majority of participants reported significant negative consequences of XXY, including infertility, psychological co-morbidities and differences in appearance. How participants coped with their negative appraisals was the greatest predictor of adaptation.
  
  
  CONCLUSIONS
  Interventions designed to help individuals reframe negative appraisals, to increase perceived manageability of the challenges of living with XXY, and to facilitate effective coping may improve adaptation among individuals with XXY.
authors.affiliation: Ophthalmic Genetics & Visual Function Branch, National Eye Institute, National Institutes of Health, Bethesda, MD, USA. Electronic address: turriffa@mail.nih.gov.
authors.forename: Amy
authors.initials: A
authors.lastname: Turriff
authors.affiliation: Department of Medicine and McKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
authors.forename: Howard P
authors.initials: HP
authors.lastname: Levy
authors.affiliation: Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA.
authors.forename: Barbara
authors.initials: B
authors.lastname: Biesecker
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000294:Adolescent Behavior; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D007713:Klinefelter Syndrome / Q000453:epidemiology / Q000523:psychology*; D008297:Male; D015999:Multivariate Analysis; D010465:Perception; D011569:Psychiatric Status Rating Scales; D012044:Regression Analysis; D057545:Social Stigma; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: 47,XXY; Adaptation; Coping; Illness perceptions; Klinefelter syndrome; Sex chromosome aneuploidy