Table 1 Baseline characteristics (at index date^a)

Females, n (%)

288 (59.9)

Age, mean (SD), years

 at index date^a

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 (confirmed^b)

53.8 (10.8)

Disease duration, mean (SD), years

 since first MS symptoms

17.2 (10.8)

 since PPMS diagnosis (confirmed^b)

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 date^a, 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 date^a, mean (SD), months

8.6 (6.5)