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Table 2 (abstract P7). Patient vs. caregiver survey responses. % (n) *

From: Abstracts from the First European Meeting for ATTR Amyloidosis for Doctors and Patients

What organs are involved besides the heart? +
  Kidney Nerves Liver GI Skin Other
Patient 11% (8) 50% (38) 17% (13) 26% (20) 5% (4) 43% (33)
Caregiver 28% (18) 57% (36) 27% (17) 37% (23) 16% (10) 16% (10)
What diagnostic procedures were done? +
  Heart biopsy Fat pad biopsy Rectal biopsy Kidney biopsy PYP/DPD MRI
Patient 57% (43) 53% (40) 11% (8) 3% (2) 32% (24) 68% (50)
Caregiver 43% (27) 41% (26) 10% (6) 8% (5) 8% (5) 35% (22)
What were the presenting symptoms? +
  Shortness of breath Fatigue Edema Dizziness Fainting Neuropathy
Patient 54% (41) 41% (31) 21% (19) 24% (18) 21% (16) 25% (19)
Caregiver 43% (27) 30% (19) 22% (14) 21% (13) 11% (7) 32% (20)
What type of physician made the diagnosis?
  Cardiologist Hematologist Internist Neurologist Nephrologist  
Patient 61% (46) 7% (5) 7% (5) 13% (10) 1% (1)  
Caregiver 40% (25) 3% (2) 5% (3) 10% (6) 3% (2)  
What type of physician made a misdiagnosis? +
  Cardiologist Hematologist Internist Neurologist Nephrologist GP
Patient 28% (21) 3% (2) 4% (3) 7% (5) 3% (2) 8% (6)
Caregiver 29% (18) 3% (2) 14% (9) 5% (3) 5% (3) 17% (11)
  1. * not all respondents answered all questions
  2. + respondents could check all answers that applied