Table 1.

Characteristics of families, caregivers, patients and siblings.

Families N (%).	212 (100)
Two legal guardians	166 (78.3)
One legal guardian	46 (21.7)
Low-income	.167 (78.7)
High-income	45 (21.3)
Low educational level	77 (36.3)
High educational level	135 (63.7)
Very dissatisfied with family QoL	1 (0.5)
Dissatisfied with family QoL	2 (0.9)
Moderately satisfied with family QoL	45 (21.2)
Satisfied with family QoL	100 (47.2)
Very satisfied with family QoL	64 (30.2)
Family Quality of Life Scale total score Median (IQR)	96.0 (86.0–107.0)
Caregivers’ burden N (%)	212 (100)
Absent burden	45 (21.2)
Mild to moderate burden	122 (57.5)
Moderate to severe burden	38 (17.9)
Severe burden	7 (3.3)
Burden Interview total score Median (IQR)	30.0 (22.0–38.2)
Patients (N)	212
Age N (%)
2–5 years	93 (43.9)
6–9 years	74 (34.9)
10–12 years	28 (13.2)
13–16 years	17 (8.0)
Age (years) Median (IQR)	6 (4–10)
Sex N (%)
Male	120 (56.6)
Female	92 (43.4)
Functional characteristics N (%)
Low motor impairment	109 (51.4)
High motor impairment	103 (48.6)
Low swallowing impairment	182 (85.9)
High swallowing impairment	30 (14.1)
Intellectual impairment N (%)
Present global developmental delay or intellectual disability	169 (79.7)
Absent global developmental delay or intellectual disability	43 (20.3)
Epilepsy N (%)
Present epilepsy	108 (50.9)
Absent epilepsy	104 (49.1)
Siblings (N)	131
Age N (%)
10–12 years	65 (49.6)
13–15 years	66 (50.4)
Age (years) Median (IQR)	13 (11–14)
Sex N (%)
Male	62 (47.3)
Female	69 (52.7)

IQR, interquartile range; N, number;%, percentage.