Table 1 Demographics and Medical History of Caregivers by Country

Demographics

Age (years), mean ± SD (median)

41.9 ± 6.7 (42)

42.9 ± 6.7 (42)

42.1 ± 7.7 (43)

40.1 ± 7.9 (41)

42.4 ± 3.6 (43)

Sex, n (%)

 Male

131 (54.1)

29 (46.8)

38 (62.3)

34 (57.6)

30 (50.0)

 Female

111 (45.9)

33 (53.2)

23 (37.7)

25 (42.4)

30 (50.0)

Married or in a domestic partnership, n (%)

209 (86.4)

52 (83.9)

48 (78.7)

52 (88.1)

57 (95.0)

Highest education attainment (top 4), n (%)

 High school diploma/equivalent or lower

16 (6.6)

1 (1.6)

12 (19.7)

3 (5.1)

-

 Some college/university or Associate’s degree

56 (23.1)

20 (32.3)

12 (19.7)

17 (28.8)

7 (11.7)

 College or university graduate/bachelor’s degree

107 (44.2)

27 (43.5)

25 (41.0)

25 (42.4)

30 (50.0)

 Advanced degree

63 (26.0)

14 (22.6)

12 (19.7)

14 (23.7)

23 (38.3)

Household income (in local currency), n (%)

 < 75,000

33 (13.6)

5 (8.1)

17 (27.9)

10 (16.9)

1 (1.7)

 ≥ 75,000

208 (86.0)

57 (91.9)

43 (70.5)

49 (83.0)

59 (98.3)

 Prefer not to say

1 (0.4)

-

1 (1.6)

-

-

Relationship to person with BBS, n (%)

 Mother

101 (41.7)

30 (48.4)

21 (34.4)

20 (33.9)

30 (50.0)

 Father

125 (51.7)

28 (45.2)

34 (55.7)

33 (55.9)

30 (50.0)

 Other

16 (6.6)

4 (6.5)

6 (9.8)

6 (10.2)

-

Others responsible for care of person with BBS, n (%)

 Parent

176 (72.7)

43 (69.4)

46 (75.4)

46 (78.0)

41 (68.3)

 Grandparent

29 (12.0)

7 (11.3)

10 (16.4)

7 (11.9)

5 (8.3)

 Other

32 (13.2)

8 (12.9)

9 (14.8)

7 (11.9)

8 (13.3)

 No others are responsible

43 (17.8)

10 (16.1)

11 (18.0)

8 (13.6)

14 (23.3)

Medical History

Currently receiving treatment for condition (top 5), n (%)

 Eating disorders

19 (7.9)

1 (1.6)

4 (6.6)

11 (18.6)

3 (5.0)

 Anxiety disorders

13 (5.4)

1 (1.6)

4 (6.6)

3 (5.1)

5 (8.3)

 High blood pressure

12 (5.0)

1 (1.6)

5 (8.2)

3 (5.1)

3 (5.0)

 High cholesterol

12 (5.0)

2 (3.2)

2 (3.3)

3 (5.1)

5 (8.3)

 Sleep disorders

10 (4.1)

4 (6.5)

2 (3.3)

2 (3.4)

2 (3.3)