Table 1.
Baseline characteristics (at index datea)
| Parameter | N = 481 |
|---|---|
| Females, n (%) | 288 (59.9) |
| Age, mean (SD), years | |
| at index datea | 60.5 (11.5) |
| at onset of disease (first symptoms) | 43.3 (11.6) |
| at onset of disease (first MS diagnosis) | 46.5 (11.4) |
| at PPMS diagnosis (confirmedb) | 53.8 (10.8) |
| Disease duration, mean (SD), years | |
| since first MS symptoms | 17.2 (10.8) |
| since PPMS diagnosis (confirmedb) | 6.7 (4.9) |
| Time between confirmed diagnosis and EDSS assessment within the registry | 0.1 (3.6) |
| Prior RRMS diagnosis, n (%) | 62 (12.9) |
| Prior SPMS diagnosis, n (%) | 7 (1.5) |
| EDSS, median (IQR); mean (SD)c | |
| Total score | 5.0 (3.5–6.5); 4.9 (2.1) |
| Pyramidal functions | 3.0 (2.0–4.0); 2.8 (1.5) |
| Cerebellar functions | 1.0 (0.0–2.0); 1.4 (1.3) |
| Brainstem functions | 0.0 (0.0–1.0); 0.6 (0.9) |
| Sensory functions | 1.0 (0.0–2.0); 1.3 (1.3) |
| Sphincteric functions | 1.0 (0.0–2.0); 1.2 (1.2) |
| Visual functions | 0.0 (0.0–0.0); 0.3 (0.7) |
| Cerebral functions | 1.0 (0.0–2.0); 1.1 (1.1) |
| Ambulation score | 3.0 (0.0–6.0); 3.4 (3.2) |
| Time from last EDSS assessment to index datea, mean (SD), months | 9.0 (6.8) |
| Current DMT Use, n (%) | |
| Approved DMT | 89 (18.5) |
| Other DMT | 41 (8.5) |
| Untreated | 351 (73.0) |
| Use of pain medication, n (%) | 58 (12.1) |
| Use of antidepressants, n (%)d | 44 (9.1) |
| Non-medical support, n (%) | |
| Physiotherapy | 273 (56.8) |
| Support from family | 73 (15.2) |
| Outpatient care | 22 (4.6) |
| Domestic help | 139 (28.9) |
| Short-term care | 1 (0.2) |
| Daycare | 1 (0.2) |
| EQ5D index value, mean (SD) | 0.6 (0.3) |
| EQ VAS, mean (SD) | 56.9 (22.3) |
| Time from last PRO to index datea, mean (SD), months | 8.6 (6.5) |
DMT disease modifying treatment, EDSS Expanded Disability Status Scale, IQR Interquartile range, MS Multiple sclerosis, PPMS Primary progressive multiple sclerosis, PRO Patient-reported outcome, RRMS Relapsing–remitting multiple sclerosis, SD Standard deviation, SPMS secondary progressive multiple sclerosis, VAS visual analogue scale
aIndex date: 1 Jan 2021
bconfirmed within the NTD registry
cLast assessment, within 2 years from index date
dselective serotonin reuptake inhibitors, tricyclic antidepressants, serotonin-norepinephrine reuptake inhibitors, mirtazapine, escitalopram, venlafaxine, noradrenergic and specific serotonergic antidepressants, amitriptyline, neuroleptics, sertraline