Table 1.
Demographics, clinical information, and diagnostic process features of the included sample.
| Variables | Participants included in the regression analysesa |
|---|---|
| N | 522 |
| Age at baseline, median (IQR) | 47 (38; 54) |
| Sex—female | 384 (73.6%) |
| Disease duration at baseline (years)b, median (IQR) | 7 (3; 13) |
| Disease duration not available | 11 (2.1%) |
| MS form at baseline | |
| CIS | 9 (1.7%) |
| RRMS | 384 (73.6%) |
| PPMS | 49 (9.4%) |
| SPMS | 72 (13.8%) |
| Not available | 8 (1.5%) |
| EDSS proxy at baseline | |
| 0–3.5 | 420 (80.5%) |
| 4–6.5 | 68 (13%) |
| 7–10 | 32 (6.1%) |
| Not available | 2 (0.4%) |
| Contacted first doctor | |
| General practitioner | 352 (67.4%) |
| Ophthalmologist | 68 (13%) |
| Neurologist | 44 (8.4%) |
| Emergency room | 34 (6.5%) |
| Other specialists | 23 (4.4%) |
| Not available | 1 (0.2%) |
| Time from contact with a physician to first symptom evaluation | |
| Same day/next day | 96 (18.4%) |
| Within 1 week | 115 (22%) |
| 1–2 weeks | 75 (14.4%) |
| 2–4 weeks | 68 (13%) |
| 1–3 months | 60 (11.5%) |
| More than 3 months | 94 (18%) |
| Other | 14 (2.7%) |
| Specialization of doctor at the first visit | |
| General practitioner/internist | 308 (59%) |
| Neurologist | 124 (23.8%) |
| Other specialist (incl. ophthalmologist) | 89 (17%) |
| Not available | 1 (0.2%) |
| Place of the first visit | |
| Private practice | 349 (66.9%) |
| Hospital | 111 (21.3%) |
| Emergency room | 59 (11.3%) |
| Not available | 3 (0.6%) |
| Action on evaluation tests by the first physician | |
| Refer to other MD | 335 (64.2%) |
| Lead the tests | 146 (28%) |
| No action taken | 35 (6.7%) |
| Not available | 6 (1.1%) |
| Next steps and visits sufficiently explained | |
| Yes | 354 (67.8%) |
| Partially | 125 (23.9%) |
| No | 41 (7.9%) |
| Not available | 2 (0.4%) |
| Setting of further evaluation | |
| Outpatient | 332 (63.6%) |
| Inpatient | 136 (26.1%) |
| In- and outpatient | 47 (9%) |
| Not available | 7 (1.3%) |
| Setting of diagnosis (from confirmation of diagnosis document) | |
| Neurologist in a hospital | 267 (51.1%) |
| Neurologist in a private practice | 191 (36.6%) |
| Others (general practitioner, …) | 2 (0.6%) |
| Not available | 62 (11.9%) |
| Number of doctors visited prior to MS diagnosis | |
| One | 34 (6.5%) |
| Two | 244 (46.7%) |
| Three | 128 (24.5%) |
| More than three | 114 (21.8%) |
| Not available | 2 (0.4%) |
| Time from first symptom evaluation to MS diagnosis | |
| Less than 1 week | 87 (16.7%) |
| 1–2 weeks | 98 (18.8%) |
| 2–4 weeks | 78 (14.9%) |
| 1–3 months | 101 (19.3%) |
| 3–6 months | 48 (9.2%) |
| 6–12 months | 34 (6.5%) |
| More than 1 year | 72 (13.8%) |
| Other | 4 (0.8%) |
IQR: interquartile range; CIS: clinically isolated syndrome; RRMS: relapsing remitting multiple sclerosis; PPMS: primary progressive multiple sclerosis; SPMS: secondary progressive multiple sclerosis; EDSS: Kurtzke Expanded Disability Status Scale.
Participants at the 6-month follow-up, diagnosed since 1996 and with both dependent variables available.
The MS duration refers to the time difference between the MS diagnosis date and the date of baseline survey. Where available, the diagnosis date was obtained from the diagnosis confirmation sheet provided by the treating physician (available for 89%). For the remainder, diagnosis dates were self-reported in the baseline questionnaires.