Factors associated with adaptation to Klinefelter syndrome: The experience of adolescents and adults

• We report correlates of adaptation to XXY using a newly published adaptation scale.
• Participants reported significant negative consequences of living with XXY.
• Use of problem-focused coping strategies was positively correlated with adaptation.
• Age was negatively correlated with adaptation.
• Facilitating effective coping may improve adaptation among individuals with XXY.

ObjectiveThe 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.MethodsIndividuals (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.ResultsThe use of problem-focused coping strategies was positively correlated with adaptation (p < 0.01) and age was negatively correlated with adaptation (p < 0.05).ConclusionThe 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.Practice implicationsInterventions 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.