Table 1 Sample description of participating parents and their children in the study at baseline

Parents

Gender: female n (%)

66 (89.2)

36 (94.7)

30 (83.3)

χ²(1) = 2.49

p = .114

Age in years M (SD),

min - max.

40.18 (7.65)

26–57

39.89 (7.38)

26–56

40.47 (8.02)

26–57

t(72) = − 0.32

p = .748

Completed educational/vocational training, or university education n (%)

73 (98.6)

37 (97.4)

36 (100.0)

χ²(1) = 0.96

p = .327

Current employment n (%)

χ²(3) = 7.43

p = .059

Non-working

19 (25.7)

12 (31.6)

7 (19.4)

Full-time employed

13 (17.6)

3 (7.9)

10 (27.8)

Part-time employed

31 (41.9)

19 (50.0)

12 (33.3)

Occupational retraining or marginally employed

11 (14.9)

4 (10.5)

7 (19.4)

Living together with a partner: n (%)

60 (81.1)

32 (84.2)

28 (77.8)

χ²(1) = 0.50

p = .480

GAD-7 M (SD),

min - max.

11.78 (4.19)

7–21

11.53 (3.90)

7–21

12.06 (4.52)

7–21

t(72) = − 0.54

p = .591

FoP-Q-SF M (SD),

min - max.

40.04 (7.37)

25–56

39.61 (7.34) 25–56

40.50 (7.49)

27–56

t(72) = − 0.52

p = .605

PHQ-9 M (SD),

min - max.

10.78 (4.60)

2–22

10.74 (4.89)

2–22

10.82 (4.35)

3–20

t(72) = − 0.08

p = .937

*ULQIE M (SD),

min - max.

47.78 (13.55) 11–82

48.43 (14.29)

11–82

47.09 (12.89) 17–73

t(70) = − 0.42

p = .676

CHIP-D M (SD),

min - max.

23.83 (10.60)

1–45

23.52 (10.41) 1–45

24.16 (10.95)

3–44

t(72) = − 0.26

p = .794

Children and adolescents

Gender: female n (%)

30 (40.5)

16 (42.1)

14 (38.9)

χ²(1) = 0.08

p = .778

Age in years M (SD),

min - max.

6.94 (6.00)

0–24

6.68 (6.42)

0–24

7.21 (5.61)

0–17

t(72) = − 0.37

p = .710

Rare diseases n (%)

χ²(3) = 3.99

p = .263

Metabolic diseases

20 (27.0)

8 (21.1)

12 (33.3)

Congenital malformations

16 (21.6)

11 (28.9)

5 (13.9)

Not specified chromosomal abnormalities

15 (20.3)

6 (15.8)

9 (25.0)

Other rare diseases

23 (31.1)

13 (34.2)

10 (27.8)