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Table 2 Responses to QoL free text question 1

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 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
  1. 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