Abstract P375: Envisioning an “Ideal State” for Hypertrophic Cardiomyopathy — Patients and Health Care Professionals Discuss Steps to Improve Guideline-Directed Diagnosis and Treatment

Abstract

Introduction: Hypertrophic cardiomyopathy (HCM) is the most common inherited heart disease, affecting an estimated 1 in 500 adults in the U.S. Despite its prevalence, the condition is underdiagnosed because HCM symptoms are not widely recognized among patients and health care professionals. Previously, the American Heart Association (AHA) hosted two Roundtable Discussions on HCM. These discussions identified diagnosis challenges and education resource gaps, and highlighted updates to HCM scientific guidelines. Objective: Build on previous Roundtables to identify steps needed to achieve an “ideal state” for patients with HCM through a guided discussion with patients and multi-disciplinary health care professionals. Methods: The virtual Roundtable was facilitated using a semi-structured interview guide with HCM patients (n=3) and multi-disciplinary health care professionals (n=8). The discussion recording was transcribed, and inductive and deductive thematic analyses identified key themes. Results: Patients described an “ideal state” that included increased awareness and management of HCM among patients and health care professionals, a greater sense of empowerment and trust in health care systems, and improved connections with allied health, mental health, and peer support services. Health care professionals described an “ideal state” as increased awareness of and training in HCM and genetics at all levels of medical education, equitable and timely access to care and diagnosis, improved models of care, and scientific advancements to improve treatment and diagnosis. Health care professionals cited financial barriers to achieving this state, particularly the need to improve health care financing to facilitate HCM care coordination across departments and health systems. The role of technology and digital tools was also identified as key to achieving the “ideal state,” with health care professionals noting both promise and limitations in their ability to improve HCM diagnosis and treatment. Conclusions: Reaching an “ideal state” for diagnosing and treating HCM patients requires systematic changes at the patient, health care professional, and health care system levels. Addressing the steps outlined during this discussion could vastly improve treatment, outcomes, and quality of life for patients with HCM as well as support health care professionals as they provide timely, guideline-directed diagnosis and treatment.