Table 1 Characteristics of the study participants

Patients

 Mean age, years

18.9 ± 8.2

 Mean age at diagnosis, years

4.4 ± 2.4

 Non-ambulant patients, n (%)

38 (82.6)

  Mean age at loss of ambulation, years

9.7 ± 2.3

 Patients on assisted ventilation, n (%)

27 (58.7)

  Full-time

7 (15.2)

  Non full-time

20 (43.5)

 Mean age at start of assisted ventilation, years

16.9 ± 4.3

Caregiver^a

 Female, n (%)

39 (84.8)

 Mean age, years

48.8 ± 9.8

Relationship to the patient, n (%)

  Parent

44 (95.7)

  Other family member

2 (4.3)

 Number of daily informal care hours

12.6 ± 5.6