Background Because of an increasing number and complexity of treatment options for lipid-lowering therapy in patients with atherosclerotic cardiovascular disease, guidelines recommend greater active involvement of patients in shared decision-making. However, patients' understanding and perceptions of the benefits, risks, and treatment objectives of lipid-lowering therapy are unknown. Methods and Results Structured questionnaires were conducted in 5006 US outpatients with atherosclerotic cardiovascular disease and suboptimal low-density lipoprotein cholesterol (LDL-C) control (LDL-C ≥70 mg/dL) or on a PCSK9 (proprotein convertase subtilisin/kexin type 9) inhibitor and in 113 physician providers as a part of the GOULD (Getting to an Improved Understanding of Low-Density Lipoprotein Cholesterol and Dyslipidemia Management) Registry. Mean age of the patients was 68±10 years, 60% were men, and 86% were White race. Across all patients, 63% believed heart disease was the leading cause of death in men and 46% the leading cause of death in women. Only 28% of patients thought the primary reason they were taking lipid-lowering medication was to lower the risk of heart attack or stroke, 68% did not know their approximate LDL-C level, and 69% did not know their LDL-C goal. Patients on PCSK9 inhibitors (versus LDL-C cohort), younger patients (versus age ≥65 years), and men (versus women) were somewhat more knowledgeable about their disease and its management. Most physicians (66%) felt that a lack of understanding of the importance and efficacy of statins was the primary factor contributing to nonadherence, as opposed to costs (9%) or side effects (1%). More education was the most commonly used strategy to address patient-reported side effects. Conclusions A large proportion of patients with atherosclerotic cardiovascular disease remain unaware of their underlying atherosclerotic cardiovascular disease risk, reasons for taking lipid-lowering medications, current LDL-C levels, or treatment goals. These data highlight a large education gap which, if addressed, may improve shared decision-making and treatment adherence. Registration URL: https://www.clinicaltrials.org; Unique identifier: NCT02993120.
Keywords: cardiovascular diseases; low‐density lipoprotein cholesterol; medication adherence; shared decision‐making.