Developing a quality of life questionnaire for people with PCOS to be used in a community setting

Polycystic Ovary Syndrome (PCOS) is a common endocrine condition in women, with a diverse range of symptoms related to cardiovascular health (insulin resistance, type 2 diabetes cardiovascular risk factors), mental health (anxiety, depression, poor body image, disordered eating) and reproductive outcomes (gestational diabetes, infertility, preclampsia). Although common, it is thought to be under-diagnosed, and it is not a stable condition over the life course. Women with PCOS have different experiences of Quality of Life (QoL) depending on their age, ethnicity, socio economic status, severity and phenotype. A high-quality QoL questionnaire specifically designed to be used in clinical settings would help clinicians better identify areas of life in which people with PCOS need further assistance in, and in response, provide appropriate healthcare referrals. To date quality of life in PCOS questionnaires have been developed yet they are lengthy to complete and not ell targeted to the population. Developing a shorter questionnaire that directly targets the areas most important for people with PCOS is needed to better PCOS care and support in this population. To date interviews have been conducted with women diagnosed with PCOS based in Australia and Netherlands to identify the 5 most important areas of life in this population. Interviews have been analysed using content analysis. This honours projects continues this work by focusing only on the Australian data to develop and test a quality of life questionnaire specifically for women with PCOS to be used in a clinical setting. The questionnaire should consider the limited time availability commonly a barrier in allied health and medical consults. The questionnaire should also be easy to read and self-administered. By the end of this project, the student would have developed a validated QoL-PCOS questionnaire ready to be evaluated in clinical Australian settings.