Table 4.
Similarity between diary and follow-up survey information on health-related quality of life, symptoms, and medication use provided by 134 electronic health diary campaign participants.a
| Characteristics | Overlap | Union | Jaccard index | |
| EQ-5D-5L | ||||
|
|
EQ-5D-5L: ≤0.71 (overall median) | 52 | 71 | 0.73 |
|
|
EQ-5D-5L: >0.71 | 33 | 52 | 0.63 |
| EQ-VASb | ||||
|
|
EQ-VAS: ≤80 (overall median) | 34 | 58 | 0.59 |
|
|
EQ-VAS: >80 | 23 | 47 | 0.49 |
| Symptoms | ||||
|
|
Gait disorder | 33 | 66 | 0.50 |
|
|
Signs of paralysis | 12 | 24 | 0.50 |
|
|
Fatigue | 39 | 80 | 0.49 |
|
|
Paresthesia (eg, numbness and tingling) | 34 | 73 | 0.47 |
|
|
Tremor | 8 | 18 | 0.44 |
|
|
Intestinal disorders (eg, constipation) | 14 | 34 | 0.41 |
|
|
Weakness | 22 | 58 | 0.38 |
|
|
Vestibular disorders | 23 | 62 | 0.37 |
|
|
Pain | 22 | 63 | 0.35 |
|
|
Affective lability and lack of control over emotions | 5 | 15 | 0.33 |
|
|
Spasms (muscle cramps) | 18 | 56 | 0.32 |
|
|
Memory disorders | 9 | 28 | 0.32 |
|
|
Bladder disorders (eg, bladder weakness) | 16 | 51 | 0.31 |
|
|
Convulsions and tics | 5 | 17 | 0.29 |
|
|
Sexual disorders | 5 | 19 | 0.26 |
|
|
Visual impairments | 7 | 30 | 0.23 |
|
|
Problems with spatial orientation | 7 | 30 | 0.23 |
|
|
Dizziness | 7 | 32 | 0.22 |
|
|
Speech disorders | 4 | 20 | 0.20 |
|
|
Swallowing difficulties (dysphagia) | 3 | 15 | 0.20 |
|
|
Depression | 3 | 16 | 0.19 |
|
|
Concentration problems | 7 | 46 | 0.15 |
|
|
Other | 0 | 10 | 0 |
|
|
Epileptic convulsions | 0 | 1 | 0 |
| Ten most frequent disease-modifying medications c | ||||
|
|
Interferon beta-1a (Avonex) | 2 | 2 | 1 |
|
|
Glatiramer acetate (Copaxone) | 5 | 7 | 0.71 |
|
|
Fingolimod (Gilenya) | 12 | 21 | 0.57 |
|
|
Teriflunomide (Aubagio) | 4 | 8 | 0.50 |
|
|
Interferon beta-1b (Betaferon) | 2 | 5 | 0.40 |
|
|
Dimethyl fumarate (Tecfidera) | 1 | 32 | 0.03 |
|
|
Ocrelizumab (Ocrevus) | 0 | 36 | 0 |
|
|
Other | 0 | 33 | 0 |
|
|
Interferon beta-1a (Rebif) | 0 | 6 | 0 |
|
|
Natalizumab (Tysabri) | 0 | 6 | 0 |
|
|
Rituximab (MabThera) | 0 | 3 | 0 |
aThe Jaccard index was used to measure the similarities (reporting overlap) among the different sources (0=no similarity and 1=maximum similarity). The column Overlap represents the number of participants with overlapping reports in the diary and in the follow-up survey. The column Union represents the total number of participants who reported a specific data item at least once in the diary or the follow-up survey collecting the symptoms experienced within the last 12 months and the medication used within the last 6 months. The column Jaccard index represents the quotient of the Overlap values and the Union values. The EQ-5D-5L index and the EuroQol visual analog scale index were dichotomized using the respective medians of all included Swiss Multiple Sclerosis Registry enrollees with completed follow-up survey (n=658).
bEQ-VAS: EuroQol visual analog scale.
cThe full list of disease-modifying medications is available in Multimedia Appendix 10.