A mixed-method analysis of health literacy and indicators of well-being in women with polycystic ovary syndrome across the lifespan.

BACKGROUND

Despite the severe, chronic nature of polycystic ovary syndrome (PCOS), relatively little is known about the lived experience of women with this condition, especially as they transition through menopause.

OBJECTIVE

This mixed-methods study investigated the lived experience of women with PCOS before and after the menopause transition to understand their health literacy, barriers to healthcare management, and desired resources to improve their health and well-being.

DESIGN

This was a convergent-parallel mixed-methods study.

METHODS

Twenty-four participants completed semi-structured interviews and electronic surveys between April 2023 and August 2024. Qualitative data were analyzed using an inductive open-ended approach for thematic analysis.

RESULTS

Participants, including 17 pre-menopausal (30.1 ± 4.8 years) and 7 post-menopausal (58.6 ± 6.0 years), self-reported clinical symptoms of PCOS (irregular cycles, hirsutism, and acne) and higher than average anxiety symptoms (pre-menopausal only). Both pre- and post-menopausal women were knowledgeable about the impact of PCOS on their fertility, and expressed low to moderate health literacy to successfully manage the PCOS-related symptoms. Few participants expressed understanding of long-term chronic disease risk. Pre-menopausal participants sought resources for managing symptoms but reported dissatisfaction with provider education and overall patient care. Post-menopausal participants did not view a PCOS diagnosis as a health concern following menopause and internalized PCOS-related health issues as something to be endured. Both pre- and post-menopausal women expressed desires for improved personalized care, life-stage-specific support groups, and better patient-facing resources.

CONCLUSION

Pre-menopausal and post-menopausal women with PCOS exhibit low health literacy about the potential impact of PCOS on metabolic health. Primary care providers should be trained in how to educate women with PCOS, with an emphasis on the impact of the disease beyond reproductive health and through the lifespan. In addition, creating patient-centered resources supporting women throughout the lifespan is needed.

TRIAL REGISTRATION: This study was registered with ClinicalTrials.gov as NCT05769426.