Endocrine Abstracts (2009) 20 OC6.4

Appearance matters: the impact of perceived altered appearance as a result of Klinefelter's syndrome on psycho-social functioning

Sue Jackson & Marianne Morris

University of the West of England, Bristol, UK.

Background: Klinefelter’s syndrome (KS) is a genetic condition affecting men with the potential to severely reduce their testosterone levels and affect their physical appearance. Being a syndrome there are a variety of different symptoms which individuals may experience to a great or lesser extent. While much research has been directed at understanding the cognitive impact of KS much less research has been undertaken considering the psycho-social impact of living with the condition. This research, requested by the Klinefelter’s Syndrome Association (KSA), addresses this issue.

Method: A questionnaire was sent to the 300 members of the KSA. Items in the questionnaire covered demographic and medical information as well as the physical characteristics of the participants. Standardised questionnaires were included including measures of general anxiety and depression (HADS); social anxiety and avoidance (DAS-24); self-esteem (RSE); and quality of life (WHOQoL-Bref). Sixty-two questionnaires were returned from participants aged between 18 and 74 years (mean 43.69).

Results: Men who identified themselves as having gynaecomastia as a symptom of KS (n=37) were significantly more socially anxious (P<0.003) and had reduced quality of life (P<0.03) than those that did not. Similarly, those men who identified themselves as having a lack of facial and/or body hair (n=38) were significantly more socially anxious (P<0.03) than those that did not. Having a small penis as a result of KS significantly affected levels of depression (P<0.002), self-esteem (P<0.001), social anxiety (P<0.01) and quality of life (P<0.02).

Conclusion: These data suggest that men with KS can experience high levels of emotional distress and significantly reduced psycho-social functioning due to their visible differences, experienced as a result of their condition.

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