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

## TL;DR

This study explores how women with PCOS experience health literacy and well-being before and after menopause, finding gaps in understanding long-term risks and a need for better patient resources.

## Contribution

The study provides new insights into health literacy and care needs of women with PCOS across the lifespan, emphasizing the need for improved patient education and resources.

## Key findings

- Women with PCOS have low health literacy regarding long-term metabolic risks and symptom management.
- Pre-menopausal women reported higher anxiety and dissatisfaction with healthcare provider education.
- Post-menopausal women internalized PCOS-related health issues as unavoidable and not a concern after menopause.

## Abstract

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.

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.

This was a convergent-parallel mixed-methods study.

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.

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.

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.

This study was registered with ClinicalTrials.gov as NCT05769426.

Well being and health knowledge in women with PCOS before and after menopause

Polycystic ovary syndrome (PCOS) is a serious, long-lasting condition, but we don’t know much about what women with PCOS go through, especially during menopause. This study looked at women’s experiences with PCOS before and after menopause to understand: 1) What they know about their condition, 2) What makes healthcare difficult and 3) What resources they need. We talked to 24 women and had them fill out surveys. We carefully analyzed their answers to find common themes. We studied 17 younger women who hadn’t gone through menopause yet and 7 older women who had. Both groups reported typical PCOS symptoms like irregular periods, extra body hair, and acne. Younger women showed higher anxiety levels. All women knew how PCOS affected their ability to have children but weren’t confident in managing their symptoms. Few understood that PCOS increases risk for other health problems. Younger women looked for help with symptoms but were unhappy with their doctors’ knowledge and care. Older women didn’t think PCOS mattered after menopause and believed they just had to live with their health issues. Both groups wanted better personalized care, support groups for their age, and helpful resources. Women with PCOS don’t know enough about how it affects their overall health. Doctors need better training to explain PCOS effects beyond just reproductive issues. We also need to create better resources to help women with PCOS throughout their lives.