The impact of Polycystic Ovary Syndrome (PCOS) on quality of life: exploration, measurement and intervention.

Polycystic Ovary Syndrome (PCOS) is one of the most common endocrine disorders amongst women, estimated to affect one out of 10 women. Symptoms include infertility, obesity, alopecia, acne, hirsutism and menstrual irregularities. Women with the syndrome are also more likely to experience co-morbid physical and psychological conditions such as diabetes, heart disease, endometrial cancer and also depression and anxiety. PCOS has also been found to have a negative impact on quality of life. This thesis aimed to further understanding, and improve quality of life of women with PCOS in the UK. To achieve this, the thesis aimed to investigate and identify how women with PCOS in the UK perceive and define their quality of life and to further understanding of the day-to-day experience of living with PCOS. Moreover, in order to measure quality of life, it aimed to develop and validate a UK disease-specific quality of life measure for women with PCOS. It also aimed to identify, develop and test a pilot intervention to increase quality of life in women with PCOS. To achieve these aims a mixed-methods approach was taken employing a variety of data generation and collection methods including: photovoice, online Skype™ interviews; LimeSurvey and Qualtrics. The findings of this thesis emphasise that PCOS has a negative impact on quality of life; encompassing psychological, social, environmental, and physical domains of quality of life. Women with PCOS who experienced the symptoms of infertility, hirsutism, weight, alopecia, skin discolouration, skin tags and mood swings had significantly lower scores of overall quality of life than those women who did not experience the symptoms. In addition, those women with PCOS who had a diagnosis of anxiety and/or depression had reduced quality of life. The dissemination of these findings will enable health care professionals to better understand the experience of living with PCOS and its impact on quality of life. Moreover, this thesis identifies many areas for future research which will enable a better understanding of the impact of PCOS on quality of life. Finally, this thesis makes recommendations for clinical practice which include improvement of support from health care professionals for women with PCOS in order to help them better manage their symptoms, and therefore improve their overall quality of life.