Table 1 CRD parents’ demographic characteristics.

From: Invisible patients in rare diseases: parental experiences with the healthcare and social services for children with rare diseases. A mixed method study

Characteristics

Caregivers

N/N (%)

Caregiver’s role

 Mother

860 (93)

 Father

57 (6.2)

 Other relative (grandmother, sister, legal guardian)

8 (0.8)

Caregiver’s age (in years)

 Range

19–72

 Median

37

 IQR (1–3)

33–41

 Mean (95%CI)

37.4 (37–37.8)

 SD (95%CI)

6.1 (5.7–6.4)

Number of children with RDs

 1

852 (92.1)

 2 or more

73 (7.9)

Education

 High school or less

305 (33)

 University

620 (67)

Professional activity

 Employed

412 (44.5)

 Unemployed

505 (54.6)

 Pension

8 (0.9)

Number of hours per week you receive extra-curricular help with CRDS

 0

738 (79.8)

 1–6

114 (12.3)

 7–10

26 (2.8)

 11–15

9 (1)

 16–20

14 (1.5)

 More than 20

24 (2.6)

Care allowance

 Yes

676 (73.1)

 No

249 (26.9)