From: Leigh syndrome global patient registry: uniting patients and researchers worldwide
Age first used (years) | |||||
---|---|---|---|---|---|
Disease management device | Na | Disease management device used | Nb | Mean (SD); Mode | Median (Q1, Q3); Min, Max |
n (%) | |||||
Mobility device | 113 | 81 (71.68) | 52 | 3.5 (5.9); 2 | 2.0 (1.1, 3.0); 0, 40 |
NG/JG/G tube | 112 | 55 (49.11) | 44 | 2.9 (3.1); 3 | 1.8 (1.0, 3.5); 0, 17 |
Orthotics | 106 | 50 (47.17) | 42 | 2.4 (1.5); 2 | 2.0 (1.4, 3.0); 1, 8 |
Tracheotomy | 112 | 30 (26.79) | 25 | 3.6 (1.8); 3 | 3.0 (2.0, 5.0); 1, 7 |
Communication device | 110 | 25 (22.73) | 20 | 4.6 (5.1); 3 | 3.0 (2.5, 5.5); 1, 25 |
Secretion management | 109 | 22 (20.18) | 19 | 3.1 (2.3); 4 | 3.0 (1.0, 4.0); 0, 9 |
CPAPc | 23 | 10 (43.48) | |||
BIPAPc | 23 | 9 (39.13) | |||
Number of interventions used | |||||
Mean (SD); Mode | 114 | 2.2 (1.6); 1 | |||
Median (Q1, Q3); Min, Max | 2.0 (1.0, 3.0); 0, 7 |