Grant: Op. Grant: NWHRI: Innovation Fund - Healthcare implementation research

Polycystic ovary syndrome (PCOS) is a common hormone condition that affects up to 18% of females. People with PCOS can have different symptoms such as irregular menstrual periods or unwanted hair growth and are at increased risk of developing serious complications like high blood pressure, diabetes, and heart disease. A group of international PCOS experts have created guidelines on how to diagnose and treat PCOS. These recommendations are based on data published in academic journals and expert opinion. The main strategy recommended for treating PCOS symptoms and for preventing PCOS complications is self-management with lifestyle. Lifestyle management includes exercise, behavioural strategies, healthy eating, and weight management. The PCOS Guidelines recommend that all people with PCOS should be provided with inclusive, high-quality PCOS tools and resources. A recent survey in Alberta found that less than 10% of people with PCOS have been provided with education or resources about how to manage their chronic condition, and there is a lack of reliable resources available to guide PCOS self-management. Recent studies have found that there are considerable levels of misinformation related to PCOS care being distributed across social media channels. There is considerable need to develop patient-centred self-management tools for PCOS for use in Canada. The overall goal of this research program is to develop inclusive, accessible, and reliable self-management tools co-created by people with PCOS for people with PCOS. The content in these tools will be based on the evidence recommended in the PCOS International Guidelines for lifestyle management. Through this proposed research, we aim to: 1)Determine the experiences of people with PCOS living in Alberta with current resources for PCOS self-management. 2)Co-create high-quality, credible, inclusive, accessible resources and tools for PCOS self-management with people who have lived experience with PCOS.