Key result
Patients with ATTR-CM and ATTR-PN experienced a prolonged diagnostic odyssey with frequent misdiagnoses, debilitating symptoms such as fatigue, and significant emotional and physical burdens on themselves and their families.
Why the study?
Despite increasing awareness of ATTR symptoms and diagnostic criteria, there was a paucity of published data on the patient journey and family experience.
Population
Patients with ATTR-CM or ATTR-PN and their families
Comparison
ATTR-CM focus group vs ATTR-PN focus group
Design
Qualitative focus group study
Authors
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Supports clinician education on ATTR red flags; leaves open quantitative evaluation of support interventions.
This qualitative study highlights the profound physical and emotional burden of ATTR amyloidosis on patients and their families, emphasizing the urgent need for earlier diagnosis and better support systems.
Rintell et al. (2021) studied Transthyretin amyloid cardiomyopathy (ATTR-CM) and polyneuropathy (ATTR-PN) (n=25). Transthyretin amyloidosis (ATTR-CM and ATTR-PN) was evaluated on Patient and family experience (diagnostic odyssey, symptoms, and family dynamics). Patients with ATTR-CM and ATTR-PN experienced a prolonged diagnostic odyssey with frequent misdiagnoses, debilitating symptoms such as fatigue, and significant emotional and physical burdens on themselves and their families.
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