Table 1.
Characteristics of the study population and their corresponding P values (significance level: .05; N=658).a
| Characteristics | Participants in health diary campaign (n=134) | Nonparticipants (n=524) | P value | |
| Age (years), median (IQR) | 52.5 (43.25-59.75) | 47 (38-55) | <.001b | |
| Sex, n (%) | .12c | |||
|
|
Female | 101 (75.4) | 356 (67.9) |
|
|
|
Male | 33 (24.6) | 168 (32.1) |
|
| Language, n (%) | <.001c | |||
|
|
German | 100 (74.6) | 433 (82.6) |
|
|
|
French | 25 (18.7) | 73 (13.9) |
|
|
|
Italian | 9 (6.7) | 18 (3.5) |
|
| MSd duration (years), median (IQR) | 9 (4-19) | 9 (4-16) | .17b | |
| MS type, n (%) | <.001c | |||
|
|
CISe | 2 (1.5) | 10 (1.9) |
|
|
|
PPMSf | 18 (13.4) | 50 (9.5) |
|
|
|
RRMSg | 79 (59) | 352 (67.2) |
|
|
|
Transition | 3 (2.2) | 16 (3.1) |
|
|
|
SPMSh | 32 (23.9) | 79 (15.1) |
|
|
|
Missing information | N/Ai | 17 (3.2) |
|
| Marital status, n (%) | <.001c | |||
|
|
Unmarried | 43 (32.1) | 174 (33.2) |
|
|
|
Registered partnership or married | 71 (53) | 273 (52.1) |
|
|
|
Separated or divorced | 17 (12.7) | 59 (11.3) |
|
|
|
Widowed | 1 (0.7) | 8 (1.5) |
|
|
|
Missing information | 2 (1.5) | 10 (1.9) |
|
| Education, n (%) | .59c | |||
|
|
Partial or completed mandatory schooling | 3 (2.2) | 8 (1.5) |
|
|
|
Apprenticeship or qualification to study at university level (Matura diploma) | 68 (50.8) | 250 (47.7) |
|
|
|
Higher professional education, applied university, or university | 57 (42.5) | 250 (47.7) |
|
|
|
Other | 1 (0.8) | 7 (1.4) |
|
|
|
Missing information | 5 (3.7) | 9 (1.7) |
|
| Work situation or work percentage, n (%) | .02c | |||
|
|
Not working | 63 (47) | 184 (35.1) |
|
|
|
1% to 40% | 22 (16.4) | 69 (13.2) |
|
|
|
41% to 80% | 27 (20.2) | 138 (26.3) |
|
|
|
81% to full time | 18 (13.4) | 114 (21.8) |
|
|
|
Missing information | 4 (3) | 19 (3.6) |
|
| Talk about MS with...j | .87c | |||
|
|
...relatives | 116 (86.6) | 485 (92.6) |
|
|
|
...friends | 109 (81.3) | 412 (78.6) |
|
|
|
...boss | 48 (35.8) | 179 (34.2) |
|
|
|
...work colleagues | 46 (34.3) | 189 (36.1) |
|
|
|
...leisure-time partners | 36 (26.9) | 131 (25) |
|
|
|
...other | 7 (5.2) | 23 (4.4) |
|
|
|
...nobody | 6 (4.5) | 13 (2.5) |
|
| SRDSSk score, n (%) | .02c | |||
|
|
0 to 3.5 | 84 (62.7) | 381 (72.7) |
|
|
|
4 to 6.5 | 37 (27.6) | 90 (17.2) |
|
|
|
≥7 | 13 (9.7) | 39 (7.4) |
|
|
|
Missing information | N/A | 14 (2.7) |
|
| Ten most frequent symptoms within the last 12 monthsj,l, n (%) | .42c | |||
|
|
None | 50 (37.3) | 227 (43.3) |
|
|
|
Fatigue | 57 (42.5) | 210 (40.1) |
|
|
|
Gait disorder | 52 (38.8) | 138 (26.3) |
|
|
|
Paresthesia (eg, numbness and tingling) | 50 (37.3) | 187 (35.7) |
|
|
|
Spasms (muscle cramps) | 45 (33.6) | 119 (22.7) |
|
|
|
Vestibular disorders | 43 (32.1) | 135 (25.8) |
|
|
|
Weakness | 40 (29.9) | 129 (24.6) |
|
|
|
Pain | 40 (29.9) | 143 (27.3) |
|
|
|
Bladder disorders (eg, bladder weakness) | 40 (29.9) | 109 (20.8) |
|
|
|
Concentration problems | 35 (26.1) | 127 (24.2) |
|
|
|
Intestinal disorders (eg, constipation) | 29 (21.6) | 83 (15.8) |
|
|
|
Other | 64 (47.8) | 193 (36.8) |
|
| Ten most frequent disease-modifying medications within the last 6 monthsj,l, n (%) | .20c | |||
|
|
None | 53 (39.6) | 156 (29.8) |
|
|
|
Ocrelizumab (Ocrevus) | 28 (20.9) | 87 (16.6) |
|
|
|
Fingolimod (Gilenya) | 15 (11.2) | 90 (17.2) |
|
|
|
Dimethyl fumarate (Tecfidera) | 10 (7.5) | 54 (10.3) |
|
|
|
Interferon beta-1a (Rebif) | 6 (4.5) | 19 (3.6) |
|
|
|
Glatiramer acetate (Copaxone) | 6 (4.5) | 18 (3.4) |
|
|
|
Interferon beta-1b (Betaferon) | 5 (3.7) | 14 (2.7) |
|
|
|
Teriflunomide (Aubagio) | 5 (3.7) | 15 (2.9) |
|
|
|
Natalizumab (Tysabri) | 3 (2.2) | 40 (7.6) |
|
|
|
Rituximab (MabThera) | 3 (2.2) | 15 (2.9) |
|
|
|
Interferon beta-1a (Avonex) | 2 (1.5) | 10 (1.9) |
|
|
|
Other | 1 (0.7) | 10 (1.9) |
|
aComparison between participants in the Swiss Multiple Sclerosis Registry electronic health diary campaign (defined by having at least one valid diary entry; column 2) and nonparticipants (column 3).
bTwo-tailed t test conducted.
cChi-square test conducted.
dMS: multiple sclerosis.
eCIS: clinically isolated syndrome.
fPPMS: primary progressive multiple sclerosis.
gRRMS: relapsing-remitting multiple sclerosis.
hSPMS: secondary progressive multiple sclerosis.
iN/A: not applicable.
jMultiple answers possible.
kSRDSS: Self-Reported Disability Status Scale.
lFull list of symptoms and disease-modifying medications available in Multimedia Appendix 5.