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Summary

Objective  Polycystic ovary syndrome (PCOS) has clinical features and implications for long-term health that may lead to decreased quality of life (QoL) and psychological morbidity. We studied QoL in women with PCOS, compared the findings with population norms and assessed whether they correlated with reported quality of patient information received.

Design  Cross-sectional study.

Patients  Women with PCOS by National Institutes of Health (NIH) criteria, diagnosis confirmed by one endocrinologist.

Measurements  Four questionnaires were mailed: the Short Form-36 (SF-36), the Quality-of-Life Questionnaire for Women with Polycystic Ovary Syndrome (PCOSQ), the General Health Questionnaire-28 (GHQ-28) and an assessment of information quality and sources, the Patient Information Questionnaire (PIQ).

Results  Questionnaires were sent to 443 women with PCOS from one endocrinologist's database; 203 women aged 15–65 years agreed to participate. To compare with Australian population norms, data from those women aged 18–44 years (n = 173) were used. Of these, 64% were obese, 18% overweight and 18% of normal weight. The demographics, socioeconomic status and untreated biochemistry of the responders and the total patient group were not significantly different. SF-36 scores were significantly lower than the age- and sex-matched Australian population (P < 0·01), including the overweight subset (P < 0·01). Health-related QoL by PCOSQ was similar to other published studies. GHQ-28 identified psychological morbidity in 62·4%, compared with 26·4% in a matched Australian population (P < 0·0001). Body mass index (BMI) was negatively correlated with QoL (P < 0·01). There was a positive association between the psychological domain of QoL and the subjective assessment of the quality of health-related information in general (P < 0·001), for hirsutism (P < 0·01) and for menstrual irregularity (P < 0·05).

Conclusions  We have shown impaired QoL and increased prevalence of psychological morbidity in PCOS compared with population norms. The perception of inadequate information about the condition correlated with poorer QoL scores. Improved information delivery may lead to an improvement in QoL and needs to be tested with an intervention study.