Partnering to Navigate Polycystic Ovary Syndrome (PCOS) study engages patient and clinical partners to develop a comprehensive, multidisciplinary PCOS management program in an FQHC setting in the South, where patients experience disparities in chronic condition detection, treatment and pregnancy outcomes.
ABOUT: UNC Team Partnering to Navigate Polycystic Ovary Syndrome | February 2, 2023
Narges Farahi, MD, MPH, of UNC Family Medicine is PI for a grant to develop and test a holistic polycystic ovary syndrome management program within a federally qualified health center. An interdisciplinary group of co-investigators from UNC OB-GYN, UNC School of Social Work, Piedmont Health, GWU and the Collaborative for Maternal and Infant Health are co-PIs.
The UNC Department of Family Medicine, in partnership with Piedmont Health Services, the UNC Department of Obstetrics and Gynecology, and the Collaborative for Maternal and Infant Health, has received funding from the U.S. Department of Health and Human Services Office of the Assistant Secretary of Health (US DHHS OASH) to develop and test a holistic Polycystic Ovary Syndrome (PCOS) Management Program within a Federally Qualified Health Center (FQHC). The funding totals approximately $800,000 over three years.
Aiming to reduce maternal morbidity and mortality, the Partnering to Navigate Polycystic Ovary Syndrome study engages patient and clinical partners to develop a comprehensive, multidisciplinary PCOS management program in an FQHC setting in the South, where patients experience disparities in chronic condition detection, treatment and pregnancy outcomes.
Maternal morbidity and mortality are increasing in the United States, with Black women at increased risk. One of the ways to improve pregnancy outcomes is to prevent and/or carefully manage chronic conditions. PCOS is a condition that impacts an estimated 20% of reproductive age individuals and causes an increased risk of chronic conditions and poor pregnancy outcomes. Rates of PCOS are on the rise and are higher in the South, with up to 40% of reproductive age women affected. Earlier diagnosis and better management of PCOS may help people have improved pregnancy and long-term health outcomes, but there are very few programs that manage PCOS in a holistic way or in a way that is culturally relevant to the patients who need it most.
The Partnering to Navigate PCOS project builds upon past work by researchers at UNC-Chapel Hill. A series of listening initiatives were convened between December 2021 and April 2022 to understand better the unique needs and challenges of reproductive health and reproductive justice for people with chronic conditions. The work centered on people who identify as Black, Indigenous, or both, and included women with many types of both physical and mental chronic conditions, including PCOS. These listening initiatives produced actionable strategies incorporated within the Partnering to Navigate PCOS project, including engaging and centering the voices of women with lived experience, bringing evidence to practice through professional education, and implementing coordinated, holistic, team-based care models.
This grant will engage patient and clinical stakeholders over three years to design and implement a patient-centered, evidence-based, comprehensive, multidisciplinary PCOS Management program within Piedmont Health Services (PHS). In addition, the project will include education for members of the healthcare team to improve the identification and diagnosis of PCOS at PHS, as well as patient education materials to improve PCOS-related knowledge for PCOS patients at PHS. The PCOS management program will be evaluated based on improved physical, emotional, and reproductive health for patients enrolled. An implementation toolkit will be developed and disseminated to encourage adoption of the PCOS management program in other settings.
The leadership team includes principal investigator Narges Farahi, MD, MPH, from UNC Family Medicine, and an interdisciplinary group of co-investigators with expertise in implementation science, chronic conditions, reproductive health, family medicine, health equity, maternal and child health, and community engagement/community-based participatory research. This group includes Rachel Urrutia, MD, MSCR, of UNC Obstetrics and Gynecology; Jean Dostou, MD, of UNC School of Medicine; Wanda Nicholson, MD, MPH, MBA, of George Washington University; Sarah Verbiest, DrPH, MSW, MPH, clinical professor in the UNC School of Social Work and executive director of the Collaborative for Maternal and Infant Health in the UNC School of Medicine; and Erin McClain, MPH, MA, of the UNC Collaborative for Maternal and Infant Health.
The Partnering to Navigate PCOS team includes a patient advisory board to guide patient and community elements of the work, as well as teams of clinic champions. Patient stakeholders expressed support for the project:
“We want care that is based in our communities and incorporates knowledgeable patient navigators who provide support, education, and coordination. I am excited to see that this PCOS demonstration project would develop and implement our ideas. It is essential for people with lived experience to be involved in designing the model of care they need to achieve their health goals,” Farahi said. “I am thrilled to have this opportunity to partner with people with lived experience with PCOS and multidisciplinary collaborators at UNC and Piedmont Health Services to design and implement a more holistic and supportive model of care for PCOS in a primary care community health center setting. Our aim is for patients with PCOS across the reproductive lifespan to be heard, receive early diagnosis, gain trusted information, and engage in comprehensive care tailored to their priorities and values. This is a tremendous opportunity to work upstream to improve perinatal and long-term health.”
Wolf WM, Wattick RA, Kinkade ON, Olfert MD. Geographical Prevalence of Polycystic Ovary Syndrome as Determined by Region and Race/Ethnicity. Int J Environ Res Public Health. 2018;15(11):2589. Published 2018 Nov 20. doi:10.3390/ijerph15112589.