Table 1 Demographic variables and disease/ health related characteristics

Mean age

8.4 years (0–17)

38.7 (25–51)

41.0 (24–54)

Boys

67 (54.9%, 122)

Child living at home

115 (100%)

• Non

9 (7.8%, 115)

• Regular

85 (73.9%)

• Special

21 (18.3%)

Nationality Dutch

107 (97.3%, 110)

94 (92.2%, 102)

• Elementary school

0 (0%, 108)

3 (2.9%, 105)

• Secondary education

13 (12.0%)

8 (7.6%)

• Lower vocational education

7 (6.5%)

9 (8.6%)

• Intermediate vocational education

56 (51.9%)

52 (49.5%)

• Higher vocational education

26 (24.1%)

19 (18.1%)

• University

6 (5.6%)

14 (13.3%)

Having a job

72 (65.5%, 110)

95 (91.3%, 104)

• Married

87 (76.3%, 114)

• Living together

18 (15.8%)

• Single parent

6 (5.3%)

• Divorced

3 (2.6%)

• < 1 year

11 (9.8%, 112)

• 1–2 years

18 (16.1%)

• > 3 years

83 (74.1%)

Treatment in other care instances

87 (75.0%, 116)

Involvement of other specialists in total

85 (74.6%, 114)

• Speech therapy

32 (28.1%, 114)

• Physiotherapy

63 (55.3%, 114)

• Psychologist

19 (16.7%, 114)

• Remedial educationalist

13 (11.4%, 114)

• Social worker

12 (10.5%, 114)

• Dietician

32 (28.1%, 114)

• Occupational therapist

16 (14.0%, 114)

Care leave

59 (56.7%, 104)

65 (67.7%, 96)

Health problems: In family

73 (63.5%, 115)

• Mother/Father

46 (43.8%, 105)

20 (19.8%, 101)

• Brothers/sisters

43 (41.3%, 104)

Other concerns in general

22 (20.8%, 106)

11 (12.9%, 85)

• No diagnosis

67 (54.9%)

• Mitochondrial disease

7 (5.7%)

• Non-conclusive abnormalities

32 (26.2%)

• Confirmed other diagnosis

15 (12.3%)

• No diagnosis up to date

1 (0.8%)