Demographics of respondents in the initial and second surveys
| Initial survey | Second survey | |||||
| Patient | Carer | Healthcare professional | Patient | Carer | Healthcare professional | |
| Respondents (n) | 130 | 43 | 389 | 159 | 54 | 241 |
| Age, years (%) | ||||||
| <29 | 2 (2) | 7 (16) | 37 (10) | 1 (1) | 2 (4) | 41 (17) |
| 30–49 | 24 (18) | 9 (21) | 208 (53) | 13 (8) | 13 (24) | 109 (45) |
| 50–69 | 58 (45) | 23 (53) | 132 (34) | 66 (42) | 28 (52) | 85 (35) |
| 70+ | 41 (32) | 3 (7) | 4 (1) | 74 (47) | 11 (20) | 1 (0) |
| Not specified | 5 (4) | 1 (2) | 8 (2) | 5 (3) | 0 (0) | 5 (2) |
| Sex (%) | ||||||
| Male | 90 (69) | 18 (42) | 251 (65) | 110 (69) | 12 (22) | 123 (51) |
| Female | 36 (28) | 24 (56) | 128 (33) | 46 (29) | 39 (72) | 111 (46) |
| Not specified | 4 (3) | 1 (2) | 10 (3) | 3 (2) | 3 (6) | 7 (3) |
| Ethnic group (%) | ||||||
| White | 76 (58) | 24 (56) | 154 (40) | 69 (43) | 21 (39) | 101 (42) |
| Asian | 6 (5) | 3 (7) | 42 (11) | 1 (1) | 1 (2) | 23 (10) |
| Black, mixed and others | 5 (4) | 0 (0) | 10 (3) | 0 (0) | 3 (6) | 8 (3) |
| Not specified | 43 (33) | 16 (37) | 183 (47) | 89 (56) | 29 (54) | 109 (45) |