Table 3.
MS-Specific characteristics of the 2.5-year and validation cohorts and the baseline characteristics of the participants who completed and were lost to follow-up at 2.5-year follow-up.
| Baseline, completed 2.5-year (Number (%) unless stated otherwise) (n = 1,401) | Baseline, not completed 2.5-year (Number (%) unless stated otherwise) (n = 1,065) | 2.5-year (Number (%) unless stated otherwise) (n = 1,401) | Validation (Number (%) unless stated otherwise) (n = 573) | |
|---|---|---|---|---|
| MS-SPECIFIC | ||||
| Type Of Ms At Completion Of Survey | ||||
| Benign | 64 (4.6) | 36 (3.5) | 85 (6.2) | 19 (3.3) |
| RRMS | 875 (63.3) | 616 (59.4) | 810 (59.2) | 386 (67.4) |
| SPMS | 144 (10.4) | 131 (12.6) | 199 (14.6) | 59 (10.3) |
| PPMS | 100 (7.2) | 75 (7.2) | 111 (8.1) | 40 (7.0) |
| PRMS | 18 (1.3) | 30 (2.9) | 23 (1.7) | 5 (0.9) |
| Unsure/other | 181 (13.1) | 149 (14.4) | 140 (10.2) | 53 (9.3) |
| (Missing) | (19 (1.4)) | (28 (2.6)) | (33 (2.4)) | (11 (1.9)) |
| Patient-derived Multiple Sclerosis Severity Score** | 4.4 (2.4–7.3) | 5.5 (2.9-7.6) ∧ | 4.9 (2.6 – 7.3) | 4.5 (3.0-7.7) |
| (Missing, n (%)) | (66 (4.7)) | (132 (12.4) ∧ ) | (49 (3.5)) | (25 (4.4)) |
| Disease duration since diagnosis, years** | 5.4 (2.4–11.4) | 6.4 (2.6–12.4) ∧ | 7.9 (5.0–13.9) | 4.8 (2.1–12.2) |
| (Missing, n (%)) | (0 (0.0)) | (29 (2.7) ∧ ) | (0 (0.0)) | (8 (1.4)) |
| Disease duration since symptom onset, years** | 11.4 (5.4–20.2) | 12.4 (6.6−20.6) ∧ | 14.2 (8.1–23.2) | 11.2 (5.2,20.2) |
| (Missing, n (%)) | (2 (0.1)) | (37 (3.5) ∧ ) | (3 (0.2)) | (10 (1.7)) |
| Number of doctor-diagnosed relapses in previous 12 months in relapsing-remitting MS ** | 0 (0–1) | 0 (0–1) | 0 (0–1) | 0 (0-1) |
| (Missing, n (%)) | (28 (3.2)) | (17 (2.8)) | (18 (2.2)) | (2 (0.5)) |
| CURRENTLY EXPERIENCING SYMPTOMS DUE TO A RECENT RELAPSE IN RELAPSING-REMITTING MS | ||||
| No | 535 (61.1) | 360 (58.4) | 576 (71.1) | 229 (59.3) |
| Yes | 225 (25.7) | 190 (30.8) | 147 (18.2) | 112 (29.0) |
| Unsure | 114 (13.0) | 64 (10.4) | 80 (9.9) | 43 (11.1) |
| (Missing) | (1 (0.1)) | (2 (0.3)) | (7 (0.9)) | (2 (0.5)) |
| OVERCOMING MULTIPLE SCLEROSIS (OMS) ENGAGEMENT | ||||
| No OMS resources | 350 (25.0) | 445 (41.8) | 335 (23.9) | 149 (26.0) |
| Website only | 257 (18.3) | 239 (22.4) | 193 (13.8) | 101 (17.6) |
| Book only | 43 (3.1) | 30 (2.8) | 55 (3.93) | 10 (1.8) |
| Retreat only | 1 (0.1) | 1 (0.1) | 2 (0.1) | 2 (0.4) |
| Book and website only | 576 (41.1) | 278 (26.1) | 591 (42.2) | 219 (38.2) |
| Website and retreat only | 2 (0.1) | 3 (0.3) | 1 (0.1) | 4 (0.7) |
| Book and retreat only | 5 (0.4) | 8 (0.8) | 7 (0.5) | 0 (0) |
| Book, retreat and website | 167 (11.9) | 61 (5.7) | 217 (15.5) | 88 (15.4) |
| HEALTH SERVICE UTILIZATION, PAST 6 MONTHS | ||||
| Number of visits to a medical doctor** | 2 (1-3) | 2 (1-4) | ||
| VISITS TO EMERGENCY DEPARTMENT | ||||
| No | 1,140 (81.4) | 424 (74) | ||
| Yes | 154 (11) | 102 (17.8) | ||
| (Missing) | (107 (7.6)) | (47 (8.2)) | ||
| OVERNIGHT STAYS IN HOSPITAL | ||||
| Yes | 87 (6.2) | 52 (9.1) | ||
| Number of nights | 0(0-0) | 0 (0-0) | ||
| No | 1,196 (85.344) | 468 (81.7) | ||
| (Missing) | (118 (8.4)) | (53 (9.3)) | ||
| MS IMPACTED MY EMPLOYMENT | ||||
| No | 516 (36.8) | 230 (40.1) | ||
| Yes | 842 (60.1) | 330 (57.6) | ||
| (Missing) | (43 (3.1)) | (13 (2.3)) | ||
*Mean (standard deviation).
**
Median (25-75th percentile).
# = The baseline characteristics that are associated with missingness at 2.5 year follow-up are highlighted in gray with ∧ indicating the variables that are associated with higher odds of missingness at 2.5 year follow-up. For categorical variables, the reference category was taken as the first presented category in the table, and an arbitrary p-value cut-off of 0.05 was used.