Table 1.

Demographic variables and disease/ health related characteristics

Demographics	Children N (%, Total)	Family/ general information	Mothers	Fathers
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%)
School/childcare
• Non	9 (7.8%, 115)
• Regular	85 (73.9%)
• Special	21 (18.3%)
Nationality Dutch			107 (97.3%, 110)	94 (92.2%, 102)
Level of education:
• 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)
Marital status:
• Married		87 (76.3%, 114)
• Living together		18 (15.8%)
• Single parent		6 (5.3%)
• Divorced		3 (2.6%)
Disease/ health related characteristics
Duration health complaints
• < 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)
Diagnoses
• 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%)