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Table 2 IoH© – Caregivers by Country

From: Caregiver burden in Bardet-Biedl syndrome: findings from the CARE-BBS study

 

Overall

N = 242

Canada

N = 62

Germany

N = 61

UK

N = 59

US

N = 60

Average summary scale scores (Range: 0–15) mean ± SD

7.8 ± 3.2

6.5 ± 2.5

7.8 ± 3.4

8.7 ± 3.5

8.4 ± 2.7

During the past 7 days to what extent did the person in your care’s hunger negatively affect your…

Sleep? n (%)

     

 Not at all

23 (9.5)

9 (14.5)

5 (8.2)

2 (3.4)

7 (11.7)

 A little

82 (33.9)

22 (35.5)

25 (41.0)

15 (25.4)

20 (33.3)

 Moderately

94 (38.8)

26 (41.9)

21 (34.4)

26 (44.1)

21 (35.0)

 A great deal

43 (17.8)

5 (8.1)

10 (16.4)

16 (27.1)

12 (20.0)

Mood or emotions? n (%)

    

 Not at all

28 (11.6)

9 (14.5)

9 (14.8)

6 (10.2)

4 (6.7)

 A little

77 (31.8)

25 (40.3)

15 (24.6)

17 (28.8)

20 (33.3)

 Moderately

97 (40.1)

23 (37.1)

24 (39.3)

26 (44.1)

24 (40.0)

 A great deal

40 (16.5)

5 (8.1)

13 (21.3)

10 (16.9)

12 (20.0)

Work? n (%)

     

 Not at all

33 (13.6)

10 (16.1)

9 (14.8)

7 (11.9)

7 (11.7)

 A little

80 (33.1)

31 (50.0)

19 (31.1)

14 (23.7)

16 (26.7)

 Moderately

92 (38.0)

20 (32.3)

23 (37.7)

27 (45.8)

22 (36.7)

 A great deal

37 (15.3)

1 (1.6)

10 (16.4)

11 (18.6)

15 (25.0)

Leisure or recreational activities? n (%)

 Not at all

34 (14.0)

11 (17.7)

11 (18.0)

8 (13.6)

4 (6.7)

 A little

80 (33.1)

22 (35.5)

19 (31.1)

17 (28.8)

22 (36.7)

 Moderately

81 (33.5)

22 (35.5)

23 (37.7)

15 (25.4)

21 (35.0)

 A great deal

47 (19.4)

7 (11.3)

8 (13.1)

19 (32.2)

13 (21.7)

Relationships with family or friends? n (%)

 Not at all

40 (16.5)

15 (24.2)

7 (11.5)

10 (16.9)

8 (13.3)

 A little

86 (35.5)

29 (46.8)

23 (37.7)

17 (28.8)

17 (28.3)

 Moderately

83 (34.3)

18 (29.0)

21 (34.4)

17 (28.8)

27 (45.0)

 A great deal

33 (13.6)

-

10 (16.4)

15 (25.4)

8 (13.3)

  1. IoH: Impacts of Hyperphagia; SD: standard deviation