Survey Results Highlights Best Practices in Amyloidosis Programs

Transthyretin amyloidosis cardiomyopathy (ATTR-CM) is a progressive, life-threatening condition that is underdiagnosed and often only recognized at a later stage. There are unique diagnostic and therapeutic challenges associated with ATTR-CM that often require referral to an Amyloidosis Program, which have developed strategic practices to provide multidisciplinary comprehensive care. However, the best practices of Amyloidosis Programs have not yet been systematically studied as a group.

Jose Nativi-Nicolau, MD, Cardiovascular Director, Utah Amyloidosis Program, University of Utah, Salt Lake City, and colleagues studied the best practices of Amyloidosis Programs to see if this information might provide guidance to healthcare providers who see patients with heart failure about early ATTR-CM diagnosis, comprehensive patient care, improved disease management, and appropriate timing/consideration of referral to an Amyloidosis Program.

Researchers conducted a qualitative survey by telephone or e-mail from October 14, 2019, to February 3, 2020. Fifteen cardiologists and 9 nurses with ATTR-CM expertise from 15 Amyloidosis Programs in the United States were interviewed. The survey also received responses from 16 patients with ATTR-CM (mean age, 69 years; range, 45-81 years) who have received treatment in Amyloidosis Programs; and 4 patient advocates from amyloidosis support groups.

Most of the Amyloidosis Programs included in the survey have been in existence for ≥5 years. Best practices most often cited by cardiologists were diagnostic capability and staff expertise. They identified building a multidisciplinary approach, ensuring expertise and quality of diagnostic techniques, and allocating time for patient education as the highest priorities for establishing an Amyloidosis Program. Many of the Amyloidosis Programs reported conducting frequent group meetings to discuss cases. Many Programs were staffed by genetic counselors, specialty pharmacists, and a range of clinician/nurse specialists. Most of the patients in the Programs were referred by their physicians, and many travel ≥3 hours for visits. The “ideal” Amyloidosis Program according to patients is one that features physicians with expertise in diagnosing and treating ATTR-CM, allots sufficient time for them to spend with patients, provides comprehensive patient care, and presents opportunities to participate in research/clinical trials. The majority of Amyloidosis Programs also host patient support group meetings. There are also patient advocacy groups that provide support for Amyloidosis Programs with physician/patient education and research.

Amyloidosis Programs offer comprehensive care based on staff expertise in ATTR-CM, a multidisciplinary approach, advanced diagnostics, and time dedicated to patient education. Raising awareness of Amyloidosis Program best practices among healthcare providers can reinforce the benefits of early referral and comprehensive care for patients with ATTR-CM.

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