Table 5 QoL free text responses to question 4
What resources do you think should exist for teens and young adults with SMA? | |||||||
|---|---|---|---|---|---|---|---|
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 | |
A Cure | 9.09 (2.53–21.67) | 0 | 0.117 | 0 | 5 (0.61–16.92) | 14.29 (1.78–42.81) | 0.116 |
Accessible activities | 6.82 (1.43–18.66) | 0 | 0.242 | 6.45 (0.79–21.42) | 0 | 7.14 (0.18–33.9) | 0.181 |
Accessible transit | 0 | 7.32 (1.54–19.92) | 0.108 | 6.45 (0.79–21.42) | 2.5 (0.06–13.16) | 0 | 0.755 |
Big/little support | 6.82 (1.43–18.66) | 2.44 (0.06–12.9) | 0.617 | 3.23 (0.08–16.70) | 7.5 (1.57–20.39) | 0 | 0.654 |
Caregivers | 0 | 7.32 (1.54–19.92) | 0.108 | 6.45 (0.79–21.42) | 2.5 (0.06–13.16) | 0 | 0.755 |
College/independence materials | 0 | 100.00% | 0* | 12.9 (3.63–29.83) | 12.5 (4.2–26.8) | 14.29 (1.78–42.81) | 1 |
Equipment/technology | 18.18 (8.19–32.71) | 4.88 (0.60–16.53) | 0.057 | 6.45 (0.79–21.42) | 15 (5.71–29.84) | 14.29 (1.78–42.81) | 0.591 |
Other | 2.27 (0.06–12.02) | 4.88 (0.60–16.53) | 0.607 | 3.23 (0.08–16.70) | 5 (0.61–16.92) | 0 | 1 |
Support groups | 40.91 (26.34–56.75) | 36.59 (22.12–53.06) | 0.683 | 38.71 (21.85–57.81) | 42.5 (27.04–59.11) | 28.57 (8.39–58.10) | 0.655 |
Unknown | 6.82 (1.43–18.66) | 9.76 (2.72–23.13) | 0.707 | 9.68 (2.04–25.75) | 5 (0.61–16.92) | 14.29 (1.78–42.81) | 0.516 |
Video games | 9.09 (2.53–21.67) | 0 | 0.117 | 6.45 (0.79–21.42) | 2.5 (0.06–13.16) | 7.14 (0.18–33.9) | 0.502 |