ACCESS CHALLENGES IDENTIFIED BY WOMEN WITH CARDIOVASCULAR DISEASE: FINDINGS FROM THE SECOND PHASE OF THE PATIENT-LED INSIGHTS AND PATIENT EXPERIENCES WITH CARDIOVASCULAR DISEASE (IPEC2) INITIATIVE
Author(s)
Neil Johnson, 1, Joe Vandigo, PhD2, Leigh Bell, 3, Hyvelle Ferguson-Davis, 4, Gabriela L. Ghisi, BSc PT, MSc, PhD, CRFC5, Celina Gorre, 6, Martha Gulati, MD MS FACC FAHA MASPC FESC FSCCT (hon) FNIPC (hon)7, Susan Hennessy, BSc (Hons), MHSc, PhD8, Kornelia Kotseva, MD, PhD, FESC9, Vijay Kunadian, MD10, Ellen Ross, 11, Karen Padilla, MSc1, David Kelly, 1, Brianne Donaldson, 2, Elisabeth Oehrlein, MS, PhD2;
1Global Heart Hub, Galway, Ireland, 2Applied Patient Experience, Washington, DC, USA, 3Cardiomyopathy Australia New Zealand, Victoria, Australia, 4Heart Sistas, North Lauderdale, FL, USA, 5University Health Network, KITE Research Institute, Toronto, ON, Canada, 6WomenHeart, Washington, DC, USA, 7Houston Methodist Hospital, The Davis Women’s Heart Center at the DeBakey Heart & Vascular Center, Houston, TX, USA, 8University of California, San Francisco, San Francisco, CA, USA, 9National University of Ireland Galway, National Institute for Prevention and Cardiovascular Health, Galway, Ireland, 10Newcastle University, Newcastle upon Tyne, United Kingdom, 11Heart Valve Voice Canada, Toronto, ON, Canada
1Global Heart Hub, Galway, Ireland, 2Applied Patient Experience, Washington, DC, USA, 3Cardiomyopathy Australia New Zealand, Victoria, Australia, 4Heart Sistas, North Lauderdale, FL, USA, 5University Health Network, KITE Research Institute, Toronto, ON, Canada, 6WomenHeart, Washington, DC, USA, 7Houston Methodist Hospital, The Davis Women’s Heart Center at the DeBakey Heart & Vascular Center, Houston, TX, USA, 8University of California, San Francisco, San Francisco, CA, USA, 9National University of Ireland Galway, National Institute for Prevention and Cardiovascular Health, Galway, Ireland, 10Newcastle University, Newcastle upon Tyne, United Kingdom, 11Heart Valve Voice Canada, Toronto, ON, Canada
OBJECTIVES: Cardiovascular disease (CVD) remains the leading cause of morbidity and mortality among women, despite effective therapies and prevention strategies. Women with atherosclerotic cardiovascular disease (ASCVD) frequently experience delayed diagnosis and treatment. While quantitative studies document these disparities, they do not fully capture patient-reported barriers, limiting the ability to design patient-centered interventions. This patient-led study examined the experiences of women with CVD to generate insights that inform more equitable care and efficient policy decisions.
METHODS: This qualitative study included women aged 18 years or older in the US or Canada with a physician-confirmed elevated low-density lipoprotein cholesterol and an ASCVD-related hospitalization (e.g., myocardial infarction, stroke). Participants were recruited using purposive sampling. Data were collected through virtual 90-minute focus groups conducted in English using a semi-structured guide and analyzed using iterative thematic analysis.
RESULTS: Despite differing healthcare systems, similar barriers were reported across countries. Participants described limited access to diagnostic testing and specialist care before an acute cardiovascular event. In the US, insurance denials also restricted access to specialists and diagnostic testing before the event. Participants reported that their symptoms were dismissed or misattributed to non-cardiac causes, including anxiety and asthma, and described that access to cardiologists and diagnostic procedures typically improved only after hospitalization. Gender-specific contextual factors, such as perimenopause or menopause, alongside full-time work and family responsibilities, further contributed to delayed care and reinforced symptom misattribution. Participants also detailed medication-related challenges, including side effects and difficulty determining the source of potential side effects due to interactions among treatments for comorbidities.
CONCLUSIONS: Access constraints affect the assessment of symptomatic women with ASCVD, contributing to delayed treatment initiation, which may contribute to avoidable acute care utilization and downstream costs. Our findings highlight opportunities to explore further the economic value of earlier evaluation and improved access to diagnostic services and therapies.
METHODS: This qualitative study included women aged 18 years or older in the US or Canada with a physician-confirmed elevated low-density lipoprotein cholesterol and an ASCVD-related hospitalization (e.g., myocardial infarction, stroke). Participants were recruited using purposive sampling. Data were collected through virtual 90-minute focus groups conducted in English using a semi-structured guide and analyzed using iterative thematic analysis.
RESULTS: Despite differing healthcare systems, similar barriers were reported across countries. Participants described limited access to diagnostic testing and specialist care before an acute cardiovascular event. In the US, insurance denials also restricted access to specialists and diagnostic testing before the event. Participants reported that their symptoms were dismissed or misattributed to non-cardiac causes, including anxiety and asthma, and described that access to cardiologists and diagnostic procedures typically improved only after hospitalization. Gender-specific contextual factors, such as perimenopause or menopause, alongside full-time work and family responsibilities, further contributed to delayed care and reinforced symptom misattribution. Participants also detailed medication-related challenges, including side effects and difficulty determining the source of potential side effects due to interactions among treatments for comorbidities.
CONCLUSIONS: Access constraints affect the assessment of symptomatic women with ASCVD, contributing to delayed treatment initiation, which may contribute to avoidable acute care utilization and downstream costs. Our findings highlight opportunities to explore further the economic value of earlier evaluation and improved access to diagnostic services and therapies.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
PCR166
Topic
Patient-Centered Research
Topic Subcategory
Patient Behavior and Incentives, Patient Engagement
Disease
SDC: Cardiovascular Disorders (including MI, Stroke, Circulatory)