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A survey of patients with all forms of cardiac amyloidosis and their caregivers was conducted in order to understand delays, errors, and inconsistencies in the diagnostic pathway for patients with cardiac amyloidosis and validated using caregiver responses. Data from AL amyloidosis patients was presented at the European Hematology Association (EHA) Madrid Conference in June.
The online survey was developed by the ARC and distributed to the patient mailing lists of ARC, the Amyloidosis Foundation, and Amyloidosis Support Groups in January 2017. Data collected from both patients and their caregivers, documents the initial symptoms and their journey to diagnosis of over 313 AL amyloidosis patients.
This represents the first survey compiling both caregiver and patient experiences with AL amyloidosis. Patients with AL cardiac amyloidosis frequently receive misdiagnoses and sometimes receive incorrect treatment for the misdiagnosed condition. Disease awareness among all specialists is vital, especially among those to whom patients are initially referred due to the nature of their initial symptoms. The data highlights the vital importance of education and awareness in the community to prevent the significant delays patients often experience in gaining the correct diagnosis.
See the poster