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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