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Título

BRAZILIAN PATIENT EXPERIENCES FROM THE INSIGHTS FROM PATIENTS LIVING WITH ELEVATED CHOLESTEROL (IPEC) STUDY: A PATIENT-LED INITIATIVE

Resumo

Intro:There are efforts to establish a national policy for cardiovascular disease and mobilize stakeholders to implement strategies to address the severity of cardiovascular disease and its impact in Brazil. To be effective, the new national strategy should be guided by the real-world experiences of Brazilians living with cardiovascular disease, or risk factors for cardiovascular disease. The policy should address barriers to adherence and foster improvements toward patient-relevant outcomes.
Objective:To learn from people with high cholesterol at risk of a primary or secondary cardiovascular event about their experiences, priorities, and needs inside and outside the health system, including pathways and barriers to diagnosis, treatment, and adherence.
Methods: A global Steering Committee of patient advocates, cardiology researchers, and HCPs guided study design and interpretation. Fifty individuals with confirmed high cholesterol in Brazil, Australia, and the United States participated in 60-minute semi-structured interviews. Half of the participants were required to have had a prior hospitalization for an ASCVD event. Transcripts were analyzed using a team-based approach.
Results:Participants are described in Table 1. The most common pathway to diagnosis among study participants outside Brazil was an annual physical examination (n=25). In contrast, most participants from Brazil sought care after experiencing symptoms (e.g., shortness of breath, nausea, dizziness). During the diagnosis visit, only half of Brazilians described that they were made aware of the link between high cholesterol and heart disease (n=7) and understood that medicines for high cholesterol need to be taken throughout life (n=7). Only half of Brazilians (n=8) described making lifestyle changes following their diagnosis. Adherence barriers include competing priorities (e.g., work, travel, or family obligations), support systems, and finances. Participants reported better quality of care in private clinics characterized by provider availability, meaningful engagement during the clinical encounter, and access to specialists and treatment options, highlighting areas for improvement within the Sistema Único de Saúde.
Concl:This study describes the experience of people living with high cholesterol in Brazil. It identifies structural barriers and topics for consideration when developing policy solutions to deliver high-quality, equitable care to reduce the burden of cardiovascular disease.

Palavras Chave

patient experience data; prevention; policy

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