Table 1 Characteristics of the 96 study participants
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) |
 Currently 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) |
 Mean age of diagnosis (yrs.) | 2.05 |
 SMA type | |
 Type I | 12 (19) |
 Type II | 29 (45) |
 Type III | 22 (34) |
 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 |
 Practice area/specialty | |
 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) |