Experiences of People Diagnosed with High Levels of LDL Cholesterol and Atherosclerotic Cardiovascular Disease: Results from a Multinational Qualitative Study

TL;DR

This study explores how people in three countries experience living with high LDL cholesterol and atherosclerotic cardiovascular disease, highlighting challenges in diagnosis and management.

Contribution

The study provides new qualitative insights into patient experiences and barriers to managing high LDL-C across multiple countries.

Findings

Three main pathways to diagnosing high cholesterol were identified, including routine exams and incidental findings.

Work schedules and daily routines posed barriers to maintaining healthy habits after diagnosis.

Many patients feared death and worried about their families after experiencing an ASCVD event.

Abstract

Elevated low-density lipoprotein cholesterol (LDL-C) levels are a leading risk factor for atherosclerotic cardiovascular disease (ASCVD), a major global cause of illness and death. Patients’ qualitative insights about experiences, priorities, and needs are essential for creating more targeted, patient-centered quality improvement interventions.

To document the experiences of people with high levels of low-density LDL-C in three countries.

Qualitative study of 60-min in-depth interviews with 50 adult patients from Australia, Brazil, and the United States. The study was overseen by a Steering Committee comprising patients, patient advocates, researchers, and cardiologists. The interviews explored pathways and barriers to high LDL-C diagnosis; the burden of managing high LDL-C and the awareness of the association between high LDL-C and cardiovascular risks. The data were analyzed by applying a structured, team-based approach to coding qualitative data.

There were three main pathways to diagnosing high cholesterol: routine physical exams conducted by primary care providers; symptomatic presentations or incidental findings during emergency visits and through a healthcare visit for another condition, frequently diabetes. Healthcare providers’ communication styles influenced patients’ perceptions of their conditions. Two-thirds of participants (n = 33) attempted lifestyle changes after their high cholesterol diagnosis, but work schedules and daily routines posed barriers to maintaining healthy habits. Some participants who experienced ASCVD events waited hours or days before seeking care, assuming their symptoms were not serious. After diagnosis of an ASCVD event, many patients feared death and worried about their families’ futures. When asked about potential improvements to their current therapy, 21 patients mentioned reduced administration frequency.

This pilot study provides insights into patients’ experiences living with and managing elevated LDL-C. It describes opportunities for policymakers and healthcare providers to improve the detection of elevated LDL-C and support patients in understanding risks and strategies for reducing the risk of ASCVD events.