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 (%) | Â | Â | Â | Â | Â |
 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 (%) | Â | Â | Â | Â | |
 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 (%) | Â | Â | Â | Â | Â |
 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) |