Table 1.
Information on patient characteristics and contextual factors at baseline (T1) and each six-month follow-up (T2-T7). N represents the number of patients participating at each time point
| T1 (N = 60) | T2 (N = 38) | T3 (N = 29) | T4 (N = 17) | T5 (N = 14) | T6 (N = 14) | T7 (N = 12) | |
| Age, years, median (IQR) | 61 (55–69) | 60 (54–67) | 61 (53–66) | 61 (48–68) | 63 (58–68) | 62 (50–67) | 63 (48–68) |
| Men, n (%) | 32 (53) | 21 (55) | 17 (59) | 11 (65) | 10 (71) | 8 (57) | 6 (50) |
| University education, n (%) | 22 (37) | 11 (29) | 9 (31) | 6 (35) | 5 (36) | 5 (36) | 5 (42) |
| Living with family member, n (%) | 45 (75) | 31 (82) | 23 (79) | 14 (82) | 12 (86) | 12 (86) | 10 (83) |
| Working, n | 8 | 4 | 2 | 2 | − | − | − |
| Time since diagnosis, months, median (IQR) | 17 (8–35) | 24 (14–57) | 35 (20–82) | 52 (32–107) | 60 (36–123) | 65 (45–129) | 77 (50–152) |
| Spinal onset, n (%) | 45 (75) | 30 (79) | 25 (86) | 16 (94) | 13 (93) | 13 (93) | 11 (92) |
| ALSFRS-R, median (IQR) score 0–48 | 29 (20–37) | 29 (18–34) | 25 (12–33) | 27 (16–33) | 23 (11–32) | 19 (3–26) | 15 (5–27) |
| −mild, n (%) score 37–48 | 20 (33) | 6 (16) | 5 (17) | 1 (6) | 1 (7) | − | − |
| −moderate, n (%) score 25–36 | 17 (28) | 19 (50) | 10 (35) | 9 (53) | 4 (29) | 6 (43) | 4 (33) |
| −severe, n (%) score 0–24 | 23 (39) | 13 (34) | 14 (48) | 7 (41) | 9 (64) | 8 (57) | 8 (67) |
| Medications | |||||||
| −disease modifying, n (%) | 46 (77) | 29 (76) | 23 (79) | 13 (77) | 12 (86) | 12 (86) | 10 (83) |
| −symptomatic, n (%) | 27 (45) | 22 (58) | 15 (52) | 10 (59) | 7 (50) | 8 (57) | 10 (83) |
| −anti-depressive, n (%) | 16 (27) | 11 (29) | 14 (48) | 3 (18) | 5 (36) | 3 (21) | 4 (33) |
| Ventilation | |||||||
| −non-invasive, n (%) | 18 (30) | 11 (29) | 5 (17) | 3 (18) | 3 (21) | 3 (21) | 3 (25) |
| −invasive, n (%) | 4 (7) | 3 (8) | 3 (10) | 3 (18) | 3 (21) | 5 (36) | 4 (33) |
| −Gastrostomy, n (%) | 18 (30) | 11 (29) | 11 (38) | 5 (29) | 6 (43) | 7 (50) | 7 (58) |
| Aids | |||||||
| −mobility, n (%) | 49 (82) | 35 (92) | 28 (97) | 16 (94) | 13 (93) | 14 (100) | 12 (100) |
| −activities of daily living, n (%) | 43 (72) | 31 (82) | 24 (83) | 15 (88) | 12 (86) | 13 (93) | 12 (100) |
| −communication, n (%) | 36 (60) | 23 (61) | 17 (59) | 11 (65) | 11 (79) | 13 (93) | 11 (92) |
| Home adaptations, n (%) | 34 (57) | 27 (71) | 23 (79) | 13 (77) | 12 (86) | 13 (93) | 12 (100) |
| Home care, personal assistance, n (%) | 31 (52) | 24 (63) | 23 (79) | 12 (71) | 10 (71) | 11 (79) | 10 (83) |
| Transport service, n (%) | 40 (67) | 32 (84) | 27 (93) | 17 (100) | 14 (100) | 14 (100) | 12 (100) |
IQR, interquartile range; ALSFRS-R, ALS Functioning Rating Scale-Revised.