Table 1.
Demographic and clinical characteristics of survey participants.
| Demographic characteristics | UK N=348 (%) | USA N=278 (%) | All N=626 (%) | X2 | p= | |
|---|---|---|---|---|---|---|
| Sex (n=623) | Male | 135 (38.9) | 90 (32.7) | 225 (36.7) | 2.54 | 0.11 |
| Female | 212 (61.1) | 185 (67.3) | 397 (63.8) | |||
| Age group (years) (n=608) | ≤45 | 25 (7.3) | 51 (19.1) | 76 (12.5) | ||
| >45 ≤60 | 95 (27.9) | 90 (33.7) | 185 (30.4) | 40.64 | 0.00 | |
| >60 ≤75 | 166 (48.7) | 116 (43.4) | 282 (46.4) | |||
| >75 | 55 (16.1) | 10 (3.7) | 65 (10.7) | |||
| Ethnicity (n=624) | Asian | 5 (1.4) | 7 (2.5) | 12 (1.9) | ||
| Black or African/American | 1 (0.3) | 2 (0.7) | 3 (0.5) | 3.77 | 0.71 | |
| Black African or Caribbean British | 1 (0.3) | 0 (0) | 1 (0.2) | |||
| White | 333 (95.7) | 259 (93.8) | 592 (94.9) | |||
| American Indian or Alaska Native | 0 (0) | 1 (0.4) | 1 (0.2) | |||
| Multiple | 3 (0.9) | 3 (1.1) | 6 (1.0) | |||
| Other | 5 (1.4) | 4 (1.4) | 9 (1.4) | |||
| Qualifications (highest) (n=623) | Degree | 157 (45.4) | 204 (73.6) | 361 (57.9) | ||
| Vocational/employment related | 71 (20.5) | 26 (9.4) | 97 (15.6) | 59.46 | 0.00 | |
| School/high school qualifications | 90 (26.0) | 46 (16.6) | 136 (21.8) | |||
| None | 28 (8.1) | 1 (0.4) | 29 (4.7) | |||
| Employment status (n=623) | Disabled | 50 (14.5) | 48 (17.3) | 98 (15.7) | ||
| Employed with income | 78 (22.6) | 112 (40.3) | 190 (30.5) | |||
| Retired | 204 (59.1) | 88 (31.7) | 292 (46.9) | 56.68 | 0.00 | |
| Employed without income | 3 (0.9) | 3 (1.1) | 6 (1.0) | |||
| Homemaker/carer | 4 (1.2) | 9 (3.2) | 13 (2.1) | |||
| Unemployed | 6 (1.7) | 7 (2.5) | 13 (2.1) | |||
| Other (e.g. student, employed & student) | 0 (0.0) | 11 (4.0) | 11 (1.8) | |||
| Type of AAV | EGPA | 47 (13.5) | 48 (17.3) | 95 (15.2) | ||
| GPA | 251 (72.1) | 184 (66.2) | 435 (69.5) | 20.37 | 0.00 | |
| MPA | 28 (8.0) | 43 (15.5) | 71 (11.3) | |||
| Unspecified AAV | 22 (6.3 | 3 (1.1) | 25 (4.0) | |||
| Positive ANCA test | Yes | 270 (78.3) | 222 (79.9) | 492 (79.9) | ||
| No | 15 (4.3) | 31 (11.2) | 46 (7.4) | 17.66 | 0.00 | |
| Don’t know | 60 (17.4) | 25 (9.0) | 85 (13.6) | |||
| Current disease status | Active disease | 100 (29.8) | 75 (27.0) | 175 (28.5) | 0.58 | 0.45 |
| Remission | 236 (70.2) | 203 (73.0) | 439 (71.5) | |||
| Flare within the last 2 years | Yes | 135 (40.2) | 129 (46.4) | 264 (43.0) | ||
| No | 157 (46.7) | 112 (40.3) | 269 (43.8) | 5.09 | 0.17 | |
| Don’t know | 32 (9.5) | 21 (7.6) | 53 (8.6) | |||
| Never had a flare | 12 (3.6) | 16 (5.8) | 28 (4.6) | |||
| Organs affected by AAV | Lungs | 215 (61.8) | 205 (73.7) | 420 (67.1) | 10.01 | 0.00 |
| ENT | 249 (71.6) | 215 (77.3) | 464 (74.1) | 2.70 | 0.10 | |
| Eyes | 135 (38.8) | 124 (44.6) | 259 (41.4) | 2.15 | 0.14 | |
| Kidneys | 185 (53.2) | 153 (55.0) | 338 (54.6) | 0.22 | 0.64 | |
| Nerves | 139 (39.9) | 91 (32.7) | 230 (36.7) | 3.46 | 0.06 | |
| Skin | 128 (36.8) | 123 (44.2) | 251 (40.1) | 3.58 | 0.06 | |
| Joints | 192 (55.2) | 151 (53.6) | 341 (54.5) | 0.16 | 0.70 | |
| Time from diagnosis (yrs) | Mean (SD) [range] | 10.6 (7.5) [0.2–38.8] | 7.6 (7.4) [0.1–44.5] | 9.3 (7.5) [0.1 – 44.5] | t=4.89 | 0.00 |