Table 1 Characteristics of the 96 study participants
From: A qualitative study of perceptions of meaningful change in spinal muscular atrophy
Characteristics | Number (%) |
|---|---|
Individuals with SMA | 21 |
Gender | |
Male | 10 (48) |
Female | 11 (52) |
Age Range (yrs.) | |
8–11 | 4 (19) |
12–14 | 4 (19) |
15–17 | 6 (29) |
18–26+ | 7 (33) |
SMA Type | |
Type I | 1 (5) |
Type II | 8 (38) |
Type III | 12 (57) |
Ambulatory | |
Yes | 8 (38) |
No | 13 (62) |
Form of Participation | |
Interview | 10 (48) |
Focus Group | 11 (52) |
Parents of Individuals with SMA | 64 |
Gender | |
Male | 15 (23) |
Female | 49 (77) |
Age Range of child with SMA (yrs.) | |
< 1 year | 5 (8) |
1–2 years | 6 (9) |
3–11 year | 30 (47) |
12–17 | 19 (30) |
18–25 | 5 (8) |
Age of diagnosis (yrs.) | 2.05 |
SMA Type | |
Type I | 12 (19) |
Type II | 29 (45) |
Type III | 22 (34) |
Parent of Ambulatory Child | |
Yes | 35 (55) |
No | 29 (45) |
Form of Participation | |
Interview | 21 (33) |
Focus Group | 43 (67) |
Clinicians | 11 |
Gender | |
Male | 7 (64) |
Female | 4 (36) |
Care for Multiple SMA Types | |
Yes | 10 |
No | 1 |
Years in Practice (average, range) | 20.7, 12–28 |
Specialties | |
Physical therapy (neurological conditions specialty) | 1 (9) |
Pediatric Physical Therapy | 2 (18) |
Pediatric neurology | 4 (36) |
Pediatric Orthopedic Surgeon | 1 (9) |
Pulmonology | 1 (9) |
Neurosurgery | 1 (9) |
Form of Participation | |
Interview | 7 (63) |
Focus Group | 4 (36) |