Interviews of patients with transthyretin amyloid cardiomyopathy (ATTR-CM) reveal diagnostic delays, uneven access to care and mixed feelings regarding support groups, according to findings recently published in BMC Cardiovascular Disorders.
While it is well-established that barriers to diagnosis and treatment are prevalent among patients with ATTR-CM, few studies have directly gathered patient experiences to understand how these barriers impact quality of life.
The study included eight individuals who had ATTR-CM and two who were at risk for the disease. The investigators recruited all individuals from the Cardiac Amyloidosis Clinic at University of California San Diego. Participants were all from different families, were 80% male, and had an average age of 69.5 years.
Four major themes emerged from these interviews, the first of which was a strong understanding of ATTR-CM. Overall, individuals appeared to understand that the disease occurs when misfolded transthyretin protein accumulates in the heart tissue. Participants were also moderately confident in their ability to describe the disease.
Read more about helpful links and resources for ATTR-CM
The second theme was frustration due to diagnostic delays. For many, years went by between their first symptoms and official diagnosis; one participant reported a diagnostic delay of 10 years.
Patients were also surprised that many cardiologists were relatively unfamiliar with the disease. In some instances, participants even reported that their cardiologist had never heard of it before. Non-specialist providers and specialists outside of cardiology expressed minimal understanding of ATTR-CM as well.
Furthermore, the authors observed significant disparities in access to specialized care. In particular, those from disadvantaged racial and socioeconomic groups faced more difficulty in accessing care from ATTR-CM specialists. Those who did have access to amyloidosis centers felt they could trust their providers and were confident in their ability to provide adequate care.
The final theme involved varied opinions on support groups. Some found it helpful to connect with peers, share experiences and offer advice. Others, however, explained that these groups negatively impacted their mental well-being. Some participants, for instance, explained that many discussions center around the negative aspects of living with the condition, which can become overwhelming.
“These preliminary findings highlight the benefits of a multidisciplinary, patient-centered approach to ATTR-CM care, one that prioritizes timely diagnosis, equitable access to treatment and clinical trials, and integration of the patient voice into research,” the authors concluded.
Sign up here to get the latest news, perspectives, and information about ATTR-CM sent directly to your inbox. Registration is free and only takes a minute.
