Abstract
Introduction: Familial hypercholesterolemia (FH) is an inherited disorder that leads to premature morbidity and mortality due to atherosclerotic cardiovascular disease. The 2020 FH Global Call to Action, produced by international FH global advocacy organizations, individuals with FH, and scientific experts, provides nine recommendations to reduce premature death and the public health burden of FH. We explored alignment of patient and family member perspectives with these recommendations. Methods: Interviews and focus groups were conducted with individuals with FH and their family members from multiple U.S. health systems and members of the FH Foundation community to identify barriers to identification, cascade testing, and treatment. Patient-centered perspectives were sought to develop solutions that can be implemented. These perspectives were then examined and classified, according to their alignment to recommendations within the FH Global Call to Action. Results: Stories from 75 individuals with FH and family members, who participated in at least one of the qualitative assessments, were analyzed. The table lists the FH Global Call to Action recommendations with patient-centric perspectives abstracted from individuals’ stories. The most common stories and perspectives linked to the recommendations for awareness, screening, diagnosis, testing, and treatment, and family-based care. Conclusions: The Global Call to Action recommendations resonate highly with U.S. FH individuals and their family members. Patient-centric perspectives further address the need to prioritize FH as a global public health concern and support FH education and advocacy efforts.
Published Version
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call