The median delay between symptom onset and cardiac amyloidosis diagnosis ranged from 8 to 18 months depending on subtype, with electromyography associated with a longer delay (OR 1.13; 95% CI 1.02-1.24).
Cross-Sectional (n=270)
No
Diagnosis of cardiac amyloidosis is often delayed and involves multiple specialists and tests, highlighting the need for multidisciplinary care networks to improve early recognition.
Effect estimate: OR 1.13 (95% CI 1.02-1.24)
p-value: p=0.060
AIMS: Advances have been made over the last decade in the management of cardiac amyloidosis (CA), but a delayed diagnosis is still common. The aim of this study was to describe the journey to CA diagnosis from initial clinical and to analyse time to diagnosis. METHODS AND RESULTS: Between January 2001 and May 2019, 270 consecutive patients with CA diagnosed at Toulouse University Hospital were retrospectively included in this cross-sectional study: 111 (41%) light chain amyloidosis, 122 (45%) wild-type transthyretin amyloidosis, and 37 (14%) hereditary transthyretin amyloidosis. CA onset occurred mostly with dyspnoea (50%) or systematic follow-up (10%). The cardiologist was the first line specialist in 68% of patients, followed by the nephrologist (9%) and neurologist (8%). Patients encountered a median (minimum-maximum) number of two (1-7) physician specialists and performed a median (minimum-maximum) number of three (1-8) tests before diagnosis. Median delay between symptom onset and CA diagnosis was 8 IQR 5-14, 10 IQR 3-34, and 18 IQR 4-49 months, respectively, in light chain amyloidosis, wild-type transthyretin amyloidosis, and hereditary transthyretin amyloidosis subgroups (P = .060). Having performed electromyography or spirometry was associated with a longer delay in diagnosis in the overall population: odds ratio = 1.13; 95% confidence interval 1.02 to 1.24; and odds ratio = 1.13; 1.03 to 1.24, respectively, probably due to non-specific initial symptoms. CONCLUSIONS: CA is a protean disease with various first line specialists causing a diagnostic wandering despite increasing medical community awareness. It requires a multidisciplinary specialist care networks to educate and manage symptoms and therapies.
Dang et al. (Fri,) conducted a cross-sectional in Cardiac amyloidosis (n=270). The median delay between symptom onset and cardiac amyloidosis diagnosis ranged from 8 to 18 months depending on subtype, with electromyography associated with a longer delay (OR 1.13; 95% CI 1.02-1.24).
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