Best Practices In Amyloidosis Programs: A Survey of Cardiologists, Nurses, Patients, and Patient Advocates

Abstract

Introduction Transthyretin amyloidosis cardiomyopathy (ATTR-CM) is a progressive, life-threatening condition that is underdiagnosed and frequently recognized at a late stage. ATTR-CM poses unique diagnostic and therapeutic challenges that often require referral to an Amyloidosis Program (AP). APs have developed strategic practices to provide multidisciplinary comprehensive care, and their best practices have not yet been studied as a group. Hypothesis Gaining insight on AP best practices may help provide guidance to health care providers who see patients with heart failure about early ATTR-CM diagnosis, comprehensive patient care, improved disease management, and apt timing/consideration of referral to an AP. Methods A qualitative survey was conducted by telephone or e-mail from Oct 14, 2019 to Feb 3, 2020. Interviewees were 15 cardiologists and 9 nurses with ATTR-CM expertise from 15 US APs; 16 patients with ATTR-CM (mean age, 69 y; range, 45-81 y) treated in APs; and 4 patient advocates from amyloidosis support groups. Results The majority of APs included in the survey have been in existence for ≥5 years. Best practices most often cited by cardiologists were diagnostic capability and staff expertise (Figure). The greatest priorities for establishing an AP were building a multidisciplinary approach, ensuring expertise and quality of diagnostic techniques, and allocating time for patient education. Most APs have group meetings to discuss cases, and many include genetic counselors and specialty pharmacists plus a range of clinician/nurse specialists on their teams. Most patients were referred to APs by their physicians, and many travel ≥3 hours to visit APs. Patients described the ‘ideal’ AP as one that provides physicians with expertise in ATTR-CM, sufficient time with patients, comprehensive patient care, and opportunities to participate in research/clinical trials (Figure). The majority of APs host patient support group meetings, and patient advocacy groups provide support for APs with physician/patient education and research. Conclusions APs offer comprehensive care based on staff expertise in ATTR-CM, a multidisciplinary approach, advanced diagnostics, and time dedicated to patient education. Raising awareness of AP best practices among healthcare providers can reinforce the benefits of early referral and comprehensive care for patients with ATTR-CM.