Patient-reported experiences after ASCVD hospitalisation: results from the insights from patients living with elevated cholesterol (IPEC) study

Abstract Background This study examines the experiences of people hospitalized for ASCVD-related events in three countries, focusing on how they recognized symptoms, accessed care, and managed their health afterwards. These insights can guide improvements in early detection, timely treatment, and ongoing disease management. Methods Between November 2023 and March 2024, people from Brazil, Australia, and the United States, with physician-confirmed high LDL-C for at least two years, took part in one-hour interviews using the Patient Experience Mapping Toolbox. [1] Their transcripts were analysed thematically with ATLAS.ti. Results Among the 22 participants (mean age 59.8±10.3 years; 32% female), 50% had diabetes, and 77% had high blood pressure. ASCVD-related hospitalizations included myocardial infarction (n=14), peripheral artery disease (n=7), ischemic stroke (n=5) and unstable angina (n=3). Five participants had experienced two hospitalizations and one had three. Initial symptoms ranged from flu-like illness and fatigue to chest pain. Many people delayed seeking help, often due to misinterpreting symptoms or not wanting to disrupt daily responsibilities. In several instances, someone else recognized the severity and prompted urgent care. Following hospitalization, changes in medication regimens were common, such as starting a statin, altering dosage, switching drug classes, or adding a new therapy. Participants also reported that they had previously neglected lifestyle modifications and routine lab checks. Although motivation to adhere to treatment was high after discharge, it waned when lab results did not improve as expected. Emotional distress, marked by fear and guilt, was widespread, particularly among those with repeated events. Conclusions People with high LDL-C need clear education on ASCVD symptoms and encouragement to seek immediate medical attention. Ongoing support that includes medication adjustments, lifestyle guidance, and consistent monitoring can help maintain long-term disease management. Emotional support through counselling and peer groups may reduce fear and worry, while involving family members and caregivers may prompt quicker responses and better adherence in daily life.