Table 1.
Baseline characteristics
| Characteristic | N=297 |
|---|---|
| Age at AL amyloidosis diagnosis, N = 292 | 60 (23.0-82.0) |
| Time from diagnosis to survey, years | 4.4 (<0.1-21.9) |
| ≤ 2 | 64 (22%) |
| >2 | 231 (79%) |
| Patient-reported race, N=294 | |
| White | 264 (90%) |
| Black | 10 (3.4%) |
| Other/Multiple | 16 (5.4%) |
| Prefer not to answer | 4 (1.4%) |
| Patient-reported ethnicity, N=295 | |
| Hispanic | 9 (3.1%) |
| Non-Hispanic | 278 (94%) |
| Prefer not to answer | 8 (2.7%) |
| Sex, N=296 | |
| Male | 141 (48%) |
| Female | 155 (52%) |
| AL amyloidosis subtype, N=238 | |
| Lambda | 165 (69%) |
| Kappa | 71 (30%) |
| IgM | 2 (0.8%) |
| Current 2004 AL stage, N=101 | |
| 1 | 33 (33%) |
| 2 | 37 (37%) |
| 3 | 31 (31%) |
| Median (range) number of organs involved, N=293 | 2 (1-7) |
| Number of organs involved, N=293 | |
| 1 | 126 (43%) |
| 2 | 54 (18%) |
| 3+ | 113 (39%) |
| Cardiac involvement | 171 (58%) |
| Renal involvement | 171 (58%) |
| Neurological involvement | 90 (30%) |
| Hepatic involvement | 34 (11%) |
| Gastrointestinal tract involvement | 82 (28%) |
| Tongue involvement | 47 (16%) |
| Skin/nail involvement | 45 (15%) |
| Pulmonary involvement | 13 (4.4%) |
| Muscle involvement | 20 (6.7%) |
| Other organ involvement | 28 (9.4%) |
| Treatment | |
| Prior chemotherapy | 262 (88%) |
| Prior stem cell transplant | 153 (52%) |
| Currently on active treatment | 146 (50%) |