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) |