Table 2 Responses to QoL free text question 1
What is the most difficult aspect of balancing your SMA/SMA symptoms with everyday life? | |||||||
|---|---|---|---|---|---|---|---|
Age | Motor function | ||||||
Adolescents n = 44% (95% CI) | Young Adults n = 41% (95% CI) | p value | Non independent sitter n = 31% (95% CI) | Sitter/non-independent walker n = 40% (95% CI) | Independent walker n = 14% (95% CI) | p value | |
Accessibility | 15.91 (6.64–30.07) | 14.63 (5.57–29.17) | 0.87 | 0 | 20 (9.05–35.65) | 35.71 (12.76–64.86) | 0.002* |
Advocating | 2.27 (0.06–12.02) | 2.44 (0.06–12.9) | 1 | 3.23 (0.08–16.70) | 0 | 7.14 (0.18–33.9) | 0.147 |
Balance | 6.82 (1.43–18.66) | 7.32 (1.54–19.92) | 1 | 3.23 (0.08–16.70) | 12.5 (4.2–26.8) | 0 | 0.256 |
Dependence | 22.73 (11.47–37.84) | 24.39 (12.36–40.30) | 0.857 | 16.13 (5.45–33.73) | 37.5 (22.73–54.20) | 0 | 0.008^ |
Everyday | 9.09 (2.53–21.67) | 9.76 (2.72–23.13) | 1 | 9.68 (2.04–25.75) | 5 (0.61–16.92) | 21.43 (4.66–50.80) | 0.151 |
Fatigue | 6.82 (1.43–18.66) | 17.07 (7.15–32.06) | 0.186 | 19.35 (7.45–37.47) | 7.5 (1.57–20.39) | 7.14 (0.18–33.9) | 0.258 |
Finding care | 0 | 9.76 (2.72–23.13) | 0.05* | 9.68 (2.04–25.75) | 2.5 (0.06–13.16) | 0 | 0.374 |
Mental health | 6.82 (1.43–18.66) | 0 | 0.242 | 6.45 (0.79–21.42) | 0 | 7.14 (0.18–33.9) | 0.181 |
other | 6.82 (1.43–18.66) | 0 | 0.242 | 3.23 (0.08–16.7) | 2.5 (0.06–13.16) | 7.14 (0.18–33.9) | 0.567 |
Pain | 9.09 (2.53–21.67) | 7.32 (1.54–19.92) | 1 | 12.9 (3.63–29.83) | 7.5 (1.57–20.39) | 0 | 0.451 |
Social | 13.64 (5.17–27.35) | 7.32 (1.54–19.92) | 0.486 | 16.13 (5.45–33.73) | 5 (0.61–16.92) | 14.29 (1.78–42.81) | 0.25 |