Table 1.
Sample demographics and patient clinical characteristics
| Total (n = 19) | Patients (n = 3) | Patient-caregiver dyads (n = 4) | Caregivers (n = 12) | |
|---|---|---|---|---|
| Age in years, median (IQR) | ||||
| Patient age | 11.0 (9.0) | 24.0 (3.0) | 16.0 (5.5) | 10.5 (3.5) |
| Patient age at diagnosis | 4.0 (2.4) | 3.5 (2.3) | 5.0 (2.5) | 4.0 (2.1) |
| Caregiver age | 39.0 (12.0) | NA | 31.0 (0.0) | 41.5 (11.8) |
| Patient daytime occupation, n (%) | ||||
| Pre-kindergarten or kindergarten | 2 (10.5) | 0 | 0 | 2 (16.7) |
| Elementary school | 6 (31.6) | 0 | 1 (25.0) | 5 (41.7) |
| Middle school | 3 (15.8) | 0 | 0 | 3 (25.0) |
| High school | 1 (5.3) | 0 | 1 (25.0) | 0 |
| College or university | 4 (21.1) | 1 (33.3) | 2 (50.0) | 1 (8.3) |
| At home | 3 (15.8) | 2 (66.7) | 0 | 1 (8.3) |
| Patient ambulatory status, n (%) | ||||
| Ambulatory | 6 (31.6) | 0 | 1 (25.0) | 5 (41.7) |
| Transitional | 3 (15.8) | 0 | 0 | 3 (25.0) |
| Non-ambulatory | 10 (52.6) | 3 (100.0) | 3 (75.0) | 4 (33.3) |
| Patient ventilation use, n (%) | ||||
| None | 12 (63.2) | 1 (33.3) | 2 (50.0) | 9 (75.0) |
| Nighttime ventilation | 7 (36.8) | 2 (66.7) | 2 (50.0) | 3 (25.0) |
| Patient upper limb status, n (%) | ||||
| Preserved | 8 (42.1) | 0 | 1 (25.0) | 7 (58.3) |
| Mildly impaired | 5 (26.3) | 1 (33.3) | 1 (25.0) | 3 (25.0) |
| Moderately impaired | 6 (31.6) | 2 (66.7) | 2 (50.0) | 2 (16.7) |
| Severely impaired/loss of function | 0 | 0 | 0 | 0 |
IQR interquartile range; n number