Table 1.
Cohort characteristics at time of the health assessment, summarised overall and by death status during the follow-up period
| Variable | Statistics/groups | All participants (n=961) |
Deceased participants (n=294) |
Alive participants (n=667) |
| Age (years) | Mean (SD) | 44.1 (14.6) | 52.4 (13.6) | 40.5 (13.6) |
| Min, max | 16–83 | 18–83 | 16–77 | |
| Age group | 16–25 years | 127 (13.2%) | 10 (3.4%) | 117 (17.5%) |
| 26–35 years | 153 (15.9%) | 26 (8.8%) | 127 (19.0%) | |
| 36–45 years | 246 (25.6%) | 49 (16.7%) | 197 (29.5) | |
| 46–55 years | 205 (21.3%) | 85 (28.8%) | 120 (18.0%) | |
| >55 years | 230 (23.9%) | 124 (42.0%) | 106 (15.9%) | |
| Sex | Male | 525 (54.6%) | 154 (52.4%) | 371 (55.6%) |
| Female | 436 (45.3%) | 140 (47.5%) | 296 (44.4%) | |
| Ability level | Mild ID | 382 (39.7%) | 92 (31.2%) | 290 (43.5%) |
| Moderate ID | 236 (24.5%) | 73 (24.7%) | 163 (24.4%) | |
| Severe ID | 180 (18.7%) | 67 (22.7%) | 113 (16.9%) | |
| Profound ID | 163 (17.0%) | 62 (21.1%) | 101 (15.1%) | |
| Accommodation type | Family carer | 374 (38.9%) | 70 (23.8%) | 304 (45.6%) |
| Independent | 93 (9.7%) | 36 (12.2%) | 57 (8.5%) | |
| Paid support | 435 (45.2%) | 161 (54.6%) | 274 (41.1%) | |
| Congregate care | 59 (6.1%) | 27 (9.2%) | 32 (4.8%) | |
| Down syndrome | No | 782 (81.4%) | 230 (78.2%) | 552 (82.8%) |
| Yes | 179 (18.6%) | 64 (21.7%) | 115 (17.2%) |
ID, intellectual disabilities.