Table 2.
Changes from baseline to follow-up to individual items within the DM1-ActivC
| Total sample (n = 150) |
Lower total score (i.e., worsened ability) at follow-up (n = 65) |
Higher total score (i.e., improved ability) at follow-up (n = 36) | |||||||
|---|---|---|---|---|---|---|---|---|---|
| No item change |
Higher item score at follow-up |
Lower item score at follow-up |
No item change |
Higher item score at follow-up |
Lower item score at follow-up |
No item change |
Higher item score at follow-up |
Lower item score at follow-up |
|
| Eat soup | 137 (91%) | 7 (5%) | 6 (4%) | 58 (89%) | 3 (5%) | 4 (6%) | 31 (86%) | 3 (8%) | 2 (6%) |
| Visit family or friends | 129 (86%) | 10 (7%) | 11 (7%) | 56 (86%) | 2 (3%) | 7 (11%) | 26 (72%) | 8 (22%) | 2 (6%) |
| Care for your hair and body | 129 (86%) | 8 (5%) | 13 (9%) | 53 (82%) | 2 (3%) | 10 (15%) | 29 (81%) | 4 (11%) | 3 (8%) |
| Dress your lower body | 125 (83%) | 7 (5%) | 18 (12%) | 52 (80%) | 1 (2%) | 12 (18%) | 26 (72%) | 5 (14%) | 5 (14%) |
| Wash your upper body | 128 (85%) | 10 (7%) | 12 (8%) | 55 (85%) | 3 (5%) | 7 (11%) | 27 (75%) | 4 (11%) | 5 (14%) |
| Take a shower | 124 (83%) | 12 (8%) | 14 (9%) | 53 (82%) | 2 (3%) | 10 (15%) | 27 (75%) | 7 (19%) | 2 (6%) |
| Wash your lower body | 127 (85%) | 9 (6%) | 14 (9%) | 53 (82%) | 1 (2%) | 11 (17%) | 27 (75%) | 6 (17%) | 3 (8%) |
| Get out of bed | 120 (80%) | 11 (7%) | 19 (13%) | 51 (78%) | 0 (0%) | 14 (22%) | 29 (81%) | 6 (17%) | 1 (3%) |
| Move a chair | 116 (77%) | 14 (9%) | 20 (13%) | 52 (80%) | 1 (2%) | 12 (18%) | 24 (67%) | 9 (25%) | 3 (8%) |
| Do the dusting/cleaning | 126 (84%) | 9 (6%) | 15 (10%) | 52 (80%) | 2 (3%) | 11 (17%) | 30 (83%) | 6 (17%) | 0 (0%) |
| Do the shopping | 126 (84%) | 10 (7%) | 14 (9%) | 55 (85%) | 0 (0%) | 10 (15%) | 27 (75%) | 7 (19%) | 2 (6%) |
| Tie the laces of your shoes | 112 (75%) | 11 (7%) | 27 (18%) | 42 (65%) | 2 (3%) | 21 (32%) | 27 (75%) | 7 (19%) | 2 (6%) |
| Catch an object (e.g., a ball) | 118 (79%) | 16 (11%) | 16 (11%) | 48 (74%) | 4 (6%) | 13 (20%) | 28 (78%) | 6 (17%) | 2 (6%) |
| Use dustpan and brush | 111 (74%) | 13 (9%) | 26 (17%) | 45 (69%) | 2 (3%) | 18 (28%) | 22 (61%) | 10 (28%) | 4 (11%) |
| Empty dustbin | 117 (78%) | 12 (8%) | 21 (14%) | 46 (71%) | 1 (2%) | 18 (28%) | 24 (67%) | 10 (28%) | 2 (6%) |
| Make up your bed | 111 (74%) | 14 (9%) | 25 (17%) | 47 (72%) | 3 (5%) | 15 (23%) | 24 (67%) | 9 (25%) | 3 (8%) |
| Vacuum clean | 119 (79%) | 15 (10%) | 16 (11%) | 50 (77%) | 1 (2%) | 14 (22%) | 27 (75%) | 9 (25%) | 0 (0%) |
| Serve coffee/tea on a tray | 111 (74%) | 18 (12%) | 21 (14%) | 51 (78%) | 0 (0%) | 14 (22%) | 20 (56%) | 15 (42%) | 1 (3%) |
| Dance | 107 (71%) | 17 (11%) | 26 (17%) | 40 (62%) | 3 (5%) | 22 (34%) | 26 (72%) | 8 (22%) | 2 (6%) |
| Stand up from squatting position | 95 (63%) | 21 (14%) | 34 (23%) | 33 (51%) | 7 (11%) | 25 (38%) | 21 (58%) | 9 (25%) | 6 (17%) |
| Stand on one leg | 102 (68%) | 18 (12%) | 30 (20%) | 44 (68%) | 1 (2%) | 20 (31%) | 20 (56%) | 13 (36%) | 3 (8%) |
| Walk uphill | 115 (77%) | 8 (5%) | 27 (18%) | 44 (68%) | 1 (2%) | 20 (31%) | 29 (81%) | 6 (17%) | 1 (3%) |
| Walk three flights of stairs | 115 (77%) | 15 (10%) | 20 (13%) | 46 (71%) | 5 (8%) | 14 (22%) | 26 (72%) | 8 (22%) | 2 (6%) |
| Carry and put down heavy object (10 kg) | 96 (64%) | 28 (19%) | 26 (17%) | 39 (60%) | 5 (8%) | 21 (32%) | 17 (47%) | 16 (44%) | 3 (8%) |
| Run | 116 (77%) | 16 (11%) | 18 (12%) | 46 (71%) | 4 (6%) | 15 (23%) | 24 (67%) | 11 (31%) | 1 (3%) |
Data reported as n (%). Because of rounding, percentages might not add up to 100% exactly. In total, n = 49 patients had the same DM1-ActivC total score at baseline and the follow-up visit. A higher/lower score indicates a higher/lower ability to perform activities of daily living