Table 2. Relationship between six of eight overarching event topics and individual-level measures.
| Socio-demographic characteristics | Relapse | Work | Birth, health | Partnership, MS | Rehabilitation, wheelchair | Injections, symptoms | ||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Repor- ted (N=147) |
N/A (N=843) |
Repor- ted (N=193) |
N/A (N=797) |
Repor- ted (N=85) |
N/A (N=905) |
Repor- ted (N=80) |
N/A (N=910) |
Repor- ted (N=73) |
N/A (N=917) |
Repor- ted (N=54) |
N/A (N=936) |
|
| Age | ||||||||||||
| Mean (SD) | 49.0 (12.0) | 48.5 (12.7) | 51.3 (11.8) | 47.9 (12.7) | 50.8 (12.6) | 48.3 (12.6) | 50.6 (13.9) | 48.4 (12.4) | 53.5 (12.8) | 48.1 (12.5) | 50.9 (10.6) | 48.4 (12.7) |
| Median [Min, Max] | 50.0 [25.0, 82.0] | 49.0 [19.0, 83.0] | 52.0 [25.0, 83.0] | 48.0 [19.0, 83.0] | 52.0 [25.0, 83.0] | 49.0 [19.0, 83.0] | 52.5 [25.0, 82.0] | 49.0 [19.0, 83.0] | 56.0 [19.0, 80.0] | 49.0 [20.0, 83.0] | 49.5 [29.0, 77.0] | 49.0 [19.0, 83.0] |
| Gender | ||||||||||||
| female | 116 (78.9%) | 640 (75.9%) | 142 (73.6%) | 614 (77.0%) | 68 (80.0%) | 688 (76.0%) | 64 (80.0%) | 692 (76.0%) | 53 (72.6%) | 703 (76.7%) | 41 (75.9%) | 715 (76.4%) |
| male | 31 (21.1%) | 203 (24.1%) | 51 (26.4%) | 183 (23.0%) | 17 (20.0%) | 217 (24.0%) | 16 (20.0%) | 218 (24.0%) | 20 (27.4%) | 214 (23.3%) | 13 (24.1%) | 221 (23.6%) |
| MS type | ||||||||||||
| Primary-progressive MS (n [%]) | 13 (8.8%) | 96 (11.4%) | 24 (12.4%) | 85 (10.7%) | 18 (21.2%) | 91 (10.1%) | 9 (11.3%) | 100 (11.0%) | 10 (13.7%) | 99 (10.8%) | 5 (9.3%) | 104 (11.1%) |
| Relapsing-remitting MS (n [%]) | 91 (61.9%) | 577 (68.4%) | 112 (58.0%) | 556 (69.8%) | 43 (50.6%) | 625 (69.1%) | 42 (52.5%) | 626 (68.8%) | 44 (60.3%) | 624 (68.0%) | 37 (68.5%) | 631 (67.4%) |
| Secondary-progressive MS (n [%]) | 25 (17.0%) | 105 (12.5%) | 38 (19.7%) | 92 (11.5%) | 15 (17.6%) | 115 (12.7%) | 14 (17.5%) | 116 (12.7%) | 16 (21.9%) | 114 (12.4%) | 10 (18.5%) | 120 (12.8%) |
| Transition (n [%]) | 8 (5.4%) | 31 (3.7%) | 10 (5.2%) | 29 (3.6%) | 6 (7.1%) | 33 (3.6%) | 5 (6.3%) | 34 (3.7%) | 3 (4.1%) | 36 (3.9%) | 2 (3.7%) | 37 (4.0%) |
| CIS (n [%]) | 3 (2.0%) | 20 (2.4%) | 4 (2.1%) | 19 (2.4%) | 1 (1.2%) | 22 (2.4%) | 7 (8.8%) | 16 (1.8%) | 0 (0%) | 23 (2.5%) | 0 (0%) | 23 (2.5%) |
| Missing (n [%]) | 7 (4.8%) | 14 (1.7%) | 5 (2.6%) | 16 (2.0%) | 2 (2.4%) | 19 (2.1%) | 3 (3.8%) | 18 (2.0%) | 0 (0%) | 21 (2.3%) | 0 (0%) | 21 (2.2%) |
| Marital status | ||||||||||||
| Married (n [%]) | 72 (49.0%) | 417 (49.5%) | 103 (53.4%) | 386 (48.4%) | 34 (40.0%) | 455 (50.3%) | 39 (48.8%) | 450 (49.5%) | 44 (60.3%) | 445 (48.5%) | 31 (57.4%) | 458 (48.9%) |
| Divorced (n [%]) | 16 (10.9%) | 87 (10.3%) | 23 (11.9%) | 80 (10.0%) | 15 (17.6%) | 88 (9.7%) | 10 (12.5%) | 93 (10.2%) | 6 (8.2%) | 97 (10.6%) | 2 (3.7%) | 101 (10.8%) |
| Registered partnership (n [%]) | 2 (1.4%) | 12 (1.4%) | 4 (2.1%) | 10 (1.3%) | 0 (0%) | 14 (1.5%) | 4 (5.0%) | 10 (1.1%) | 1 (1.4%) | 13 (1.4%) | 0 (0%) | 14 (1.5%) |
| Separated (n [%]) | 1 (0.7%) | 13 (1.5%) | 0 (0%) | 14 (1.8%) | 2 (2.4%) | 12 (1.3%) | 3 (3.8%) | 11 (1.2%) | 2 (2.7%) | 12 (1.3%) | 0 (0%) | 14 (1.5%) |
| Unmarried (n [%]) | 40 (27.2%) | 246 (29.2%) | 49 (25.4%) | 237 (29.7%) | 25 (29.4%) | 261 (28.8%) | 21 (26.3%) | 265 (29.1%) | 13 (17.8%) | 273 (29.8%) | 19 (35.2%) | 267 (28.5%) |
| Widowed (n [%]) | 2 (1.4%) | 16 (1.9%) | 1 (0.5%) | 17 (2.1%) | 1 (1.2%) | 17 (1.9%) | 2 (2.5%) | 16 (1.8%) | 3 (4.1%) | 15 (1.6%) | 2 (3.7%) | 16 (1.7%) |
| Other (n [%]) | 0 (0%) | 3 (0.4%) | 1 (0.5%) | 2 (0.3%) | 0 (0%) | 3 (0.3%) | 0 (0%) | 3 (0.3%) | 0 (0%) | 3 (0.3%) | 0 (0%) | 3 (0.3%) |
| Missing (n [%]) | 14 (9.5%) | 49 (5.8%) | 12 (6.2%) | 51 (6.4%) | 8 (9.4%) | 55 (6.1%) | 1 (1.3%) | 62 (6.8%) | 4 (5.5%) | 59 (6.4%) | 0 (0%) | 63 (6.7%) |
| Living situation | ||||||||||||
| With family (n [%]) | 37 (25.2%) | 258 (30.6%) | 51 (26.4%) | 244 (30.6%) | 23 (27.1%) | 272 (30.1%) | 16 (20.0%) | 279 (30.7%) | 21 (28.8%) | 274 (29.9%) | 17 (31.5%) | 278 (29.7%) |
| with friends / relatives / in shared flat (n [%]) | 2 (1.4%) | 15 (1.8%) | 3 (1.6%) | 14 (1.8%) | 1 (1.2%) | 16 (1.8%) | 3 (3.8%) | 14 (1.5%) | 0 (0%) | 17 (1.9%) | 0 (0%) | 17 (1.8%) |
| alone / single-parenting (n [%]) | 25 (17.0%) | 181 (21.5%) | 37 (19.2%) | 169 (21.2%) | 19 (22.4%) | 187 (20.7%) | 19 (23.8%) | 187 (20.5%) | 15 (20.5%) | 191 (20.8%) | 14 (25.9%) | 192 (20.5%) |
| Parents (n [%]) | 1 (0.7%) | 20 (2.4%) | 5 (2.6%) | 16 (2.0%) | 4 (4.7%) | 17 (1.9%) | 2 (2.5%) | 19 (2.1%) | 1 (1.4%) | 20 (2.2%) | 1 (1.9%) | 20 (2.1%) |
| With spouse/ partner (n [%]) | 69 (46.9%) | 316 (37.5%) | 85 (44.0%) | 300 (37.6%) | 29 (34.1%) | 356 (39.3%) | 37 (46.3%) | 348 (38.2%) | 32 (43.8%) | 353 (38.5%) | 21 (38.9%) | 364 (38.9%) |
| At clinic /residential home /therapeutic residential community (n [%]) | 1 (0.7%) | 5 (0.6%) | 1 (0.5%) | 5 (0.6%) | 1 (1.2%) | 5 (0.6%) | 2 (2.5%) | 4 (0.4%) | 0 (0%) | 6 (0.7%) | 1 (1.9%) | 5 (0.5%) |
| Other (n [%]) | 0 (0%) | 2 (0.2%) | 1 (0.5%) | 1 (0.1%) | 0 (0%) | 2 (0.2%) | 0 (0%) | 2 (0.2%) | 0 (0%) | 2 (0.2%) | 0 (0%) | 2 (0.2%) |
| Missing (n [%]) | 12 (8.2%) | 46 (5.5%) | 10 (5.2%) | 48 (6.0%) | 8 (9.4%) | 50 (5.5%) | 1 (1.3%) | 57 (6.3%) | 4 (5.5%) | 54 (5.9%) | 0 (0%) | 58 (6.2%) |
| Parentship | ||||||||||||
| Yes (n [%]) | 69 (46.9%) | 444 (52.7%) | 96 (49.7%) | 417 (52.3%) | 44 (51.8%) | 469 (51.8%) | 37 (46.3%) | 476 (52.3%) | 44 (60.3%) | 469 (51.1%) | 28 (51.9%) | 485 (51.8%) |
| No (n [%]) | 60 (40.8%) | 298 (35.4%) | 75 (38.9%) | 283 (35.5%) | 30 (35.3%) | 328 (36.2%) | 33 (41.3%) | 325 (35.7%) | 20 (27.4%) | 338 (36.9%) | 26 (48.1%) | 332 (35.5%) |
| Missing (n [%]) | 18 (12.2%) | 101 (12.0%) | 22 (11.4%) | 97 (12.2%) | 11 (12.9%) | 108 (11.9%) | 10 (12.5%) | 109 (12.0%) | 9 (12.3%) | 110 (12.0%) | 0 (0%) | 119 (12.7%) |
| Work | ||||||||||||
| (Self-)employed (n [%]) | 82 (55.8%) | 514 (61.0%) | 119 (61.7%) | 477 (59.8%) | 51 (60.0%) | 545 (60.2%) | 35 (43.8%) | 322 (35.4%) | 31 (42.5%) | 565 (61.6%) | 34 (63.0%) | 562 (60.0%) |
| Unemployed (n [%]) | 58 (39.5%) | 299 (35.5%) | 71 (36.8%) | 286 (35.9%) | 31 (36.5%) | 326 (36.0%) | 45 (56.3%) | 551 (60.5%) | 41 (56.2%) | 316 (34.5%) | 20 (37.0%) | 337 (36.0%) |
| Missing (n [%]) | 7 (4.8%) | 30 (3.6%) | 3 (1.6%) | 34 (4.3%) | 3 (3.5%) | 34 (3.8%) | 0 (0%) | 37 (4.1%) | 1 (1.4%) | 36 (3.9%) | 0 (0%) | 37 (4.0%) |
| Self-reported disability (SRDSS) | ||||||||||||
| EDSS 0-3.5 (no walking aids; n [%]) | 89 (60.5%) | 586 (69.5%) | 114 (59.1%) | 561 (70.4%) | 45 (52.9%) | 630 (69.6%) | 50 (62.5%) | 625 (68.7%) | 41 (56.2%) | 634 (69.1%) | 38 (70.4%) | 637 (68.1%) |
| EDSS 4-6.5 (use of walking aids; n [%]) | 40 (27.2%) | 164 (19.5%) | 51 (26.4%) | 153 (19.2%) | 27 (31.8%) | 177 (19.6%) | 15 (18.8%) | 189 (20.8%) | 19 (26.0%) | 185 (20.2%) | 12 (22.2%) | 192 (20.5%) |
| EDSS 7-10 (use of wheelchair; n [%]) | 11 (7.5%) | 59 (7.0%) | 23 (11.9%) | 47 (5.9%) | 10 (11.8%) | 60 (6.6%) | 15 (18.8%) | 55 (6.0%) | 10 (13.7%) | 60 (6.5%) | 4 (7.4%) | 66 (7.1%) |
| Missing (n [%]) | 7 (4.8%) | 34 (4.0%) | 5 (2.6%) | 36 (4.5%) | 3 (3.5%) | 38 (4.2%) | 0 (0%) | 41 (4.5%) | 3 (4.1%) | 38 (4.1%) | 0 (0%) | 41 (4.4%) |
| Health-related quality of life (EQ-5D) | ||||||||||||
| EQ-5D sum score (mean [SD]) | 10.1 (3.40) | 9.14 (3.74) | 10.2 (3.63) | 9.04 (3.69) | 10.3 (3.72) | 9.18 (3.69) | 10.2 (3.87) | 9.20 (3.68) | 10.2 (3.77) | 9.20 (3.69) | 9.72 (3.33) | 9.26 (3.73) |
| Missing (n [%]) | 23 (15.6%) | 145 (17.2%) | 24 (12.4%) | 144 (18.1%) | 7 (8.2%) | 161 (17.8%) | 10 (12.5%) | 158 (17.4%) | 6 (8.2%) | 162 (17.7%) | 7 (13.0%) | 161 (17.2%) |
| EQ-5D VAS (mean [SD]) | 68.1 (23.2) | 71.6 (21.8) | 66.3 (22.5) | 72.3 (21.8) | 66.8 (25.2) | 71.5 (21.7) | 68.1 (22.9) | 71.3 (22.0) | 72.3 (19.5) | 70.9 (22.3) | 68.6 (20.5) | 71.2 (22.1) |
| Missing (n [%]) | 24 (16.3%) | 139 (16.5%) | 22 (11.4%) | 141 (17.7%) | 6 (7.1%) | 157 (17.3%) | 10 (12.5%) | 153 (16.8%) | 5 (6.8%) | 158 (17.2%) | 7 (13.0%) | 156 (16.7%) |
Notes. The ‘reported’ column includes the number of study participants which have reported at least one event that can clearly be allocated to the respective topic categories. ‘N/A’ refers to participants who did not report an event that could be assigned to a given topic category.