| Length of post-index follow-up, months, mean (SD) |
11.0 (±9.58) |
27.7 (±23.37) |
36.0 (±26.5) |
| Pulmonary, n (%) |
|
|
|
|
Swallow function evaluationd
|
56.5% |
31.8% |
9.8% |
|
Mechanically assisted cough devicese
|
52.2% |
31.8% |
1.4% |
|
Pulmonologist office visitsd
|
52.2% |
36.4% |
13.5% |
|
Polysomnography/sleep studiesd
|
21.7% |
36.4% |
12.2% |
|
Noninvasive ventilatione
|
26.1% |
9.1% |
4.1% |
|
Invasive ventilatione
|
17.4% |
13.6% |
1.0% |
|
Pulmonary function testingd
|
13.0% |
45.5% |
14.5% |
|
Chest physiotherapy
|
0.0% |
0.0% |
0.3% |
| Gastrointestinal/nutritional care, n (%) |
|
|
|
|
Enteral feeding productse
|
60.9% |
39.4% |
5.1% |
|
Videofluoroscopic swallow studies (modified barium swallow studies)d
|
43.5% |
13.6% |
9.8% |
|
Gastrostomy tube placemente
|
34.8% |
13.6% |
2.0% |
|
Laparoscopic anti-reflux procedures (eg, Nissen fundoplication)e
|
21.7% |
13.6% |
0.0% |
|
Nasogastric/nasojejunal tube placemente
|
4.3% |
4.5% |
0.7% |
|
Speech/occupational therapye
|
4.3% |
0.0% |
4.1% |
|
GI motility studiesd
|
0.0% |
0.0% |
0.7% |
|
Speech/occupational therapist evaluationd
|
0.0% |
0.0% |
0.7% |
| Orthopedic care, n (%) |
|
|
|
|
Radiologic testingd
|
95.7% |
81.8% |
83.4% |
|
Physical/occupational therapist evaluationd
|
65.2% |
68.2% |
50.3% |
|
Physical/occupational therapye
|
47.8% |
86.4% |
62.2% |
|
Orthotics/orthosese
|
30.4% |
54.5% |
27.0% |
|
Orthopedic surgerye
|
17.4% |
22.7% |
38.5% |
|
Durable medical equipment (eg, wheelchairs, walkers)e
|
13.0% |
45.5% |
14.5% |
|
Orthopedic physician evaluationd
|
13.0% |
36.4% |
35.1% |
|
Scoliosis correction surgerye
|
4.3% |
4.5% |
2.0% |
| Visits, n (%) |
|
|
|
|
Neurologist
|
69.6% |
81.8% |
41.6% |
|
Home care services
|
13.0% |
4.5% |
4.7% |
|
Primary care physician
|
8.7% |
27.3% |
53.0% |