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Table 5 QoL free text responses to question 4

From: “I have SMA, SMA doesn’t have me”: a qualitative snapshot into the challenges, successes, and quality of life of adolescents and young adults with SMA

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
  1. The overwhelming majority response to Question 4 was peer-support groups. Question 4 exhibited the largest group consensus. 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 (^) indicate significance by Chi2 test