Table 1 Demographic characteristics, type of neuromuscular disease, ventilation status and response rates of patients
children | |||
|---|---|---|---|
total | ventilated | non-ventilated | |
Number of individuals | 43 | 18 | 25 |
Mean age in years (range) | 10.58 (1–21) | 12.44 (1–21) | 9.24 (2–17) |
Ventilator-use, n (%) | |||
Full time use | 4 (22.2) | ||
nocturnal use | 8 (44.4) | ||
nocturnal and intermittent daily use | 3 (16.7) | ||
intermittent as required | 2 (11.1) | ||
missing data | 1 (5.6) | ||
Type of ventilation technology, n (%) | |||
non-invasive | 11 (61.1) | ||
invasive | 6 (33.3) | ||
missing data | 1 (5.6) | ||
muscular dystrophy Duchenne, n (%) | 19 (44.2) | 2 (11.1) | 17 (68) |
other muscular dystrophy, n (%) | 8 (18.6) | 1 (5.6) | 7 (28) |
spinal muscular atrophy, n (%) | 6 (13.9) | 6 (33.3) | 0 (0) |
congenital myopathy, n (%) | 10 (23.3) | 9 (50) | 1 (4) |
Completing the questionnaire (HRQOL), n | |||
KIDSCREEN proxy version | 18 | 6 | 12 |
KIDSCREEN self-reported | 21 | 11 | 10 |
KIDSCREEN missing data | 4 | 1 | 3 |
DISABKIDS proxy version | 18 | 6 | 12 |
DISABKIDS self-reported | 21 | 11 | 10 |
DISABKIDS missing data | 4 | 1 | 3 |
Completing the questionnaire (mental health), n | |||
SDQ proxy version | 18 | 6 | 12 |
SDQ self-reported | 21 | 11 | 10 |
SDQ missing data | 4 | 1 | 3 |