Table 2.

Responses to QoL free text question 1

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

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