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Table 1 Demographic/clinical characteristics of individuals with SMAa in qualitative interview study and quantitative online survey

From: Understanding the relationship between the 32-item motor function measure and daily activities from an individual with spinal muscular atrophy and their caregivers’ perspective: a two-part study

Demographic/clinical characteristics Qualitative interview (n = 15) Quantitative online survey (n = 217)
Total, n (individual with SMA, caregivers)b 15 (8, 7) 217 (119, 98)
Country, n (individual with SMA, caregivers)b
 US 15 (8, 7) 30 (17, 13)
 Canada 0 23 (17, 6)
 France 0 28 (15, 13)
 UK 0 22 (8, 14)
 Germany 0 20 (13, 7)
 Italy 0 31 (16, 15)
 Spain 0 32 (17, 15)
 Poland 0 31 (16, 15)
Age of individual with SMA, mean years (min–max) 16 (3–25) 27 (2–59)
Gender, n (%)
 Female 11 (73) 134 (62)
 Male 4 (27) 83 (38)
Type of SMA, n (%)
 Type 2 9 (60) 116 (53)
 Type 3 – non-ambulant 1 (7) 51 (24)
 Type 3 – ambulant 5 (33) 50 (23)
Currently receiving/taking treatment to manage SMA, n (%)
 Yes 13 (87) 102 (47)
 No 2 (13) 115 (53)
Self-reported confirmed diagnosis of scoliosis, n (%)
 Yes 9 (60) 159 (73)
 No 6 (40) 58 (27)
Self-reported presence of contractures, n (%)
 Yes 10 (67) 166 (77)
 No 5 (33) 45 (21)c
Self-reported daily activities affected, n (%)
 None of the time 0 N/A
 Hardly any of the time 1 (7) N/A
 A little of the time 1 (7) N/A
 Some of the time 1 (7) N/A
 Most of the time 4 (27) N/A
 Almost all of the time 5 (33) N/A
 All of the time 3 (20) N/A
 0–25% of the time N/A 54 (25)
 26–50% of the time N/A 52 (24)
 51–75% of the time N/A 41 (19)
 76–100% of the time N/A 67 (31)
Hours per week providing care, mean (range) 94 (35–168)b 79 (0–168)b
  1. aPlease note that the information/data for seven individuals with SMA in the qualitative interview study and 98 individuals with SMA in the quantitative online survey were provided by their caregiver who participated rather than the individual themselves
  2. bThe total sample size and country of participants also includes the caregivers who participated. Hours per week providing care also relates to the caregivers who participated. All other demographic/clinical characteristics relate to the individuals with SMA
  3. cIt is unknown whether the remaining six (3%) individuals with SMA had contractures
  4. SMA Spinal muscular atrophy