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What is the most difficult aspect of balancing your SMA/SMA symptoms with everyday life?
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Age
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Motor function
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Adolescents n = 44% (95% CI)
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Young Adults n = 41% (95% CI)
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p value
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Non independent sitter n = 31% (95% CI)
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Sitter/non-independent walker n = 40% (95% CI)
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Independent walker n = 14% (95% CI)
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p value
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Accessibility
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15.91 (6.64–30.07)
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14.63 (5.57–29.17)
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0.87
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0
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20 (9.05–35.65)
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35.71 (12.76–64.86)
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0.002*
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Advocating
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2.27 (0.06–12.02)
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2.44 (0.06–12.9)
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1
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3.23 (0.08–16.70)
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0
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7.14 (0.18–33.9)
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0.147
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Balance
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6.82 (1.43–18.66)
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7.32 (1.54–19.92)
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1
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3.23 (0.08–16.70)
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12.5 (4.2–26.8)
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0
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0.256
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Dependence
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22.73 (11.47–37.84)
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24.39 (12.36–40.30)
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0.857
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16.13 (5.45–33.73)
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37.5 (22.73–54.20)
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0
|
0.008^
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Everyday
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9.09 (2.53–21.67)
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9.76 (2.72–23.13)
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1
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9.68 (2.04–25.75)
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5 (0.61–16.92)
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21.43 (4.66–50.80)
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0.151
|
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Fatigue
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6.82 (1.43–18.66)
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17.07 (7.15–32.06)
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0.186
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19.35 (7.45–37.47)
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7.5 (1.57–20.39)
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7.14 (0.18–33.9)
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0.258
|
|
Finding care
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0
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9.76 (2.72–23.13)
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0.05*
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9.68 (2.04–25.75)
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2.5 (0.06–13.16)
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0
|
0.374
|
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Mental health
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6.82 (1.43–18.66)
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0
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0.242
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6.45 (0.79–21.42)
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0
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7.14 (0.18–33.9)
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0.181
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other
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6.82 (1.43–18.66)
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0
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0.242
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3.23 (0.08–16.7)
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2.5 (0.06–13.16)
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7.14 (0.18–33.9)
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0.567
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Pain
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9.09 (2.53–21.67)
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7.32 (1.54–19.92)
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1
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12.9 (3.63–29.83)
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7.5 (1.57–20.39)
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0
|
0.451
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Social
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13.64 (5.17–27.35)
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7.32 (1.54–19.92)
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0.486
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16.13 (5.45–33.73)
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5 (0.61–16.92)
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14.29 (1.78–42.81)
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0.25
|
- Dependence and the lack of independence was the highest-cited difficult aspect, incurring 20 total respondents. Percentages are out of total number of respondents (n = 85). The table values represent statistically significant differences in responses between either the age groups (2 bins) or between the motor function groups (3 bins) using a chi square or Fisher’s exact test. Highlighted findings were found to have statistical significance; asterisk(*) indicates significance by Fisher’s exact test and carrots(^) indicates significance by Chi2 test
