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Table 4 QoL free text responses to question 3

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 social 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 11.36 (3.79–24.56) 26.83 (14.22–42.94) 0.068 16.13 (5.45–33.73) 22.5 (10.84–38.45) 14.29 (1.78–42.81) 0.708
Activity limitation 18.18 (8.19–32.71) 14.63 (5.57–29.17) 0.659 12.9 (3.63–29.83) 15 (5.71–29.84) 28.57 (8.39–58.10) 0.423
Communication difficulties 4.55 (0.56–15.47) 9.76 (2.72–23.13) 0.349 12.9 (3.63–29.83) 5 (0.61–16.92) 0 0.312
Dating 2.27 (0.06–12.02) 2.44 (0.06–12.9) 1 0 5 (0.61–16.92) 0 0.653
Dependence 6.82 (1.43–18.66) 7.32 (1.54–19.9) 1 0 15 (5.71–29.84) 0 0.04*
Feeling judged 11.36 (3.79–24.56) 0 0.056 3.23 (0.08–16.70) 7.5 (1.57–20.39) 7.14 (0.18–33.9) 0.705
Misunderstood 6.82 (1.43–18.66) 12.2 (4.08–26.20) 0.474 19.35 (7.45–37.47) 2.5 (0.06–13.16) 7.14 (0.18–33.9) 0.056
No effect 27.27 (14.96–42.79) 9.76 (2.72–23.13) 0.053 19.35 (7.45–37.47) 15 (5.71–29.84) 28.57 (8.39–58.10) 0.533
No social life 9.09 (2.53–21.67) 4.88 (0.60–16.53) 0.677 12.9 (3.63–29.83) 2.5 (0.06–13.16) 7.14 (0.18–33.9) 0.209
Other 2.27 (0.06–12.02) 12.2 (4.08–26.20) 0.102 3.23 (0.08–16.70) 10 (2.79–23.66) 7.14 (0.18–33.9) 0.542
  1. ‘No effect’ on socialization was most commonly cited by non-independent sitter, though it was followed closely by major effects including accessibility concerns and an absence of socialization. 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