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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)