Women's Perceptions of Polycystic Ovary Syndrome Following Participation in a Clinical Research Study: Implications for Knowledge, Feelings, and Daily Health Practices

Objective: Polycystic ovary syndrome (PCOS) is a complex endocrine disorder that affects 6% to 10% of reproductive aged women. It is a poorly understood and often undiagnosed condition that has implications for the health of affected women. We assessed changes in knowledge, feelings, and daily health practices related to PCOS in clinical research study participants. Methods: Sixty-eight women who had received counselling and education about PCOS while participating in a clinical research study were invited to complete an online survey that assessed levels of concern, knowledge, healthy dieting, active living, and health care satisfaction before and after the study. Differences and associations between scores were analyzed by paired t tests and Pearson correlation. Results: Forty-three women (63%) completed the survey. After taking part in a clinical research study, participants believed they had increased knowledge of (P < 0.001) and concern about (P = 0.029) the etiology and health consequences of PCOS, better lifestyle practices (P < 0.001), and improved health care satisfaction (P = 0.045). Enhanced knowledge of PCOS was positively associated with changes in concern (P = 0.045), healthy dietary habits (P = 0.04), activity levels (P = 0.003), and health care satisfaction (P < 0.001). After the study, women felt empowered to participate in the management of their condition and communicate with their primary care providers. Conclusion: Women with PCOS felt that they had more knowledge and motivation to implement preventive health strategies after participating in a clinical research study. Education about how PCOS affects their immediate and long-term health enabled women with PCOS to feel physical and psychological benefits and to engage more with their health care providers.