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Cardiac Amyloidosis: Current Insights from Patients and Cardiologists Journeying Together

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Introduction Cardiac amyloidosis (CA) can be difficult to diagnose, with a prolonged and often complex patient journey. The most common forms of CA include light-chain (AL) amyloidosis and transthyretin amyloidosis… Click to show full abstract

Introduction Cardiac amyloidosis (CA) can be difficult to diagnose, with a prolonged and often complex patient journey. The most common forms of CA include light-chain (AL) amyloidosis and transthyretin amyloidosis (hereditary or wild-type). The introduction of non-invasive diagnostic tools and emergence of novel therapies under investigation in clinical trials are boosting recognition of CA as a cause of heart failure (HF). Hypothesis The diagnosis of CA is often delayed, and patients with the disease experience a heavy disease burden. Methods An online Harris Poll survey was conducted in the U.S. (Nov. 9-Dec. 10, 2018) among cardiologists who treat HF or CA and patients age ≥18 y and diagnosed with these diseases. Participants included 505 cardiologists who reported treating ≥1 patient/mo with HF or CA and 335 patients (HF [not due to CA], n=260; CA, n=75). Results Cardiologists (mean age, 51.3 y; male, 87%; city/suburban practice, 87%; mean clinical experience, 20.2 y) saw an average of 433 patients with HF and 14.5 patients with CA in the last year. Cardiologists estimated that 41%, 28%, and 31% of their patients with CA had AL, hereditary, and wild-type disease, respectively. Nearly half of cardiologists (45%) noted an increased number of patients with CA managed in their practice compared to 5 years ago. Nearly all cardiologists (>99%) believed patients with CA experience delays in diagnosis; the most common reasons were misdiagnosis and low awareness of CA and diagnostic tests (Fig. A). Most cardiologists (96%) requested additional education on CA (Fig. B). Patients with CA were younger than those with HF (mean age, 45.6 vs 58.7 y; p Conclusions Despite recent advances, delayed diagnosis of CA remains a challenge to cardiologists and the disease continues to disrupt patients’ lives. Additional research on the characteristics of the disease and educational campaigns are needed to enhance recognition of CA and shorten the patient diagnostic journey.

Keywords: patients cardiologists; insights patients; amyloidosis current; cardiac amyloidosis; current insights; amyloidosis

Journal Title: Journal of Cardiac Failure
Year Published: 2019

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