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Table 3 QoL free text responses to question 2

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

How does SMA affect your schooling?
  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 11.36 (3.79–24.56) 9.76 (2.72–23.13) 0.55 6.45 (0.79–21.42) 7.5 (1.57–20.39) 28.57 (8.39–58.10) 0.077
Activity limitation 13.64 (5.17–27.35) 2.44 (0.06–12.9) 0.11 3.23 (0.08–16.70) 15 (5.71–29.84) 0 0.163
Aid 9.09 (2.53–21.67) 12.2 (4.08–26.20) 0.733 12.9 (3.63–29.83) 12.5 (4.2–26.8) 0 0.457
Everyday 11.36 (3.79–24.56) 4.88 (0.60–16.53) 0.435 9.68 (2.04–25.75) 2.5 (0.06–13.16) 21.43 (4.66–50.80) 0.073
Fatigue 2.27 (0.06–12.02) 17.07 (7.15–32.06) 0.026* 6.45 (0.79–21.42) 12.5 (4.2–26.8) 7.14 (0.18–33.9) 0.79
Homeschool 18.18 (8.19–32.71) 0 0.006* 6.45 (0.79–21.42) 12.5 (4.2–26.8) 7.14 (0.18–33.9) 0.79
Keep up 6.82 (1.43–18.66) 9.76 (2.72–23.13) 0.707 9.68 (2.04–25.75) 7.5 (1.57–20.39) 7.14 (0.18–33.9) 1
More effort 4.55 (0.56–15.47) 14.63 (5.57–29.17) 0.147 16.13 (5.45–33.73) 7.5 (1.57–20.39) 0 0.255
No effect 15.91 (6.64–30.07) 14.63 (5.57–29.17) 0.87 16.13 (5.45–33.73) 17.5 (7.34–32.78) 7.14 (0.18–33.9) 0.642
Other 4.55 (0.56–15.47) 7.32 (1.54–19.9) 0.669 9.68 (2.04–25.75) 2.5 (0.06–13.16) 7.14 (0.18–33.9) 0.381
Writing 2.27 (0.06–12.02) 7.32 (1.54–19.9) 0.349 3.23 (0.08–16.70) 2.5 (0.06–13.16) 14.29 (1.78–42.81) 0.217
  1. Although the most common response was ‘no effect’ with 13 total participants, responses were distributed evenly across a variety of factors including accessibility, aid, and fatigue. When categorized by motor function at time of survey completion, sitters were the main respondents of ‘no effect’, while non-sitters more commonly detailed accessibility, aid, and time/effort challenges. 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