Funding outcome

Background: Polycystic ovary syndrome (PCOS) is the most common hormone disorder in adolescent girls and women. PCOS is a major public health concern due to increased risk for other health disorders and health care costs. Our recent data shows women with PCOS have increased incidence of health disorders compared to women without PCOS in Alberta, Canada. We have built strong relationships with our PCOS patients and they have expressed concerns about their health and health care. Therefore we developed and undertook a pilot survey to assess the health care experience, needs and preferences of women with PCOS. The pilot results showed women with PCOS would like more information about managing their disease and help navigating the health care system. Aim of Project: The aim of this project is to partner with women with PCOS to develop, implement and translate the findings of a survey to determine their health care experience, needs and preferences. Objectives: I) To engage patients and stakeholders to refine and implement a population-based survey II) To analyze the findings and communicate the results of the survey III) To translate the survey findings into health care information and services that meet the needs of women with PCOS. Methods: We have formed a steering committee with stakeholders which will provide input at each stage of the project including survey design, recruitment, data analyses, interpretation and translation. The pilot survey data and questions will be reviewed and refined by the committee before the survey is given to a large sample of women with PCOS. Expected Outcomes: Results of the survey will provide the first data on the health care needs of women with PCOS. Results will be communicated to the PCOS community and used to help develop better health care information and services to meet the needs and preferences of women with PCOS.