Symptom-Level Disability Status Assessed with an Electronic Unsupervised Patient-Reported Expanded Disability Status Scale (ePR-EDSS) in Multiple Sclerosis Patients—The Example of Croatia
Abstract
1. Introduction
2. Materials and Methods
2.1. General Procedures
2.2. Participants
2.3. Methods
2.4. Statystical Analysis
3. Results
3.1. Demographic Characteristics, Comorbidity, and MS Disease-Related Factors
3.2. MS Type and EDSS-Related Differences
3.3. ePR-EDSS Disability Status and Symptom-Level Analysis
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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| RRMS | PPMS | SPMS | MS Type Not Known | Total | Test | p | |
|---|---|---|---|---|---|---|---|
| N | 105 | 19 | 6 | 17 | 147 | - | - |
| Age in years (mean ± SD) | 41.1 ± 1.9 | 47.1 ± 7.7 | 49.6 ± 9.1 | 42.9 ± 9.3 | 41.1 ± 11.3 | F = 6.12 | 0.009 ** |
| Female/Male (%) | 80/20 | 84/16 | 100/0 | 95/5 | 84/16 | χ2 = 2.45 | 0.27 |
| Hand dominance-right hand (%) | 92.4 | 94.7 | 100 | 82.4 | 91.8 | - | - |
| BMI (mean ± SD) | 24.5 ± 4.2 | 24.6 ± 5.9 | 24.3 ± 4.8 | 21.3 ± 2.9 | 19.6 ± 10.4 | - | - |
| Years of MS disease (mean ± SD) | 7.1 ± 1.7 | 5.2 ± 5.5 | 14.8 ± 7.4 | 7.2 ± 8.4 | 8.5 ± 7.4 | F = 0.29 | 0.48 |
| EDSS (median(IQR), range 0–8 | 3(2.5) | 5.5(3) | 4.7(1.5) | 1.5(4.5) | 3.0(3.0) | χ2 = 18.5 | <0.001 ** |
| Corticosteroid treatment (%) | 90.4 | 89.5 | 100 | 94.1 | 91.2 | χ2 = 0.26 | 0.87 |
| Immunomodulatory therapy (%) | 70.5 | 78.9 | 16.7 | 58.8 | 68.0 | χ2 = 1.73 | 0.56 |
| Immunomodulation Medication | RRMS n = 64 n/% | PPMS n = 11 n/% | SPMS n = 1 n/% | MS Type Not Known, n = 9 n/% | Total n = 85 n/% |
|---|---|---|---|---|---|
| Ocrelizumab (Ocrevus) | 14/21.8 | 3/27.2 | - | 1/11.1 | 17/20.0 |
| Glatiramer-Acetate (Copaxone, Glatopa, Remurel) | 7/10.9 | 3/27.2 | - | 2/22.2 | 13/15.5 |
| Fingolimod (Gilenya) | 8/12.5 | 1/9.1 | - | 2/22.2 | 13/15.5 |
| Dimethyl Fumarate (Tecfidera) | 9/14.2 | - | 1/100 | 1/11.1 | 10/11.6 |
| Interferon (ifn beta-1a) (Rebif) | 7/10.9 | - | - | 1/11.1 | 10/11.6 |
| Peginterferon (beta-1a) (Plegridy) | 6/9.3 | 1/9.1 | - | - | 6/7.8 |
| Teriflunomid (Aubagio) | 2/3.1 | 2/18.2 | - | - | 4/4.6 |
| Interferon (ifn beta-1b) (Betaferon) | 3/4.7 | - | - | 1/11.1 | 4/4.6 |
| Natalizumab (Tysabri) | 3/4.7 | - | - | - | 3/3.3 |
| Cladribine (Leustatin, Mavenclad) | 2/3.1 | - | - | - | 3/3.3 |
| Alemtuzumab (Campath, Lemtrada) | - | 1/9.1 | 1/11.1 | 2/2.3 |
| Other Chronic Diseases (Not MS) | RRMS n = 35 n/% | PPMS n = 5 n/% | SPMS n = 2 n/% | MS Type Not Known, n = 1 n/% | Total n = 43 n/% |
|---|---|---|---|---|---|
| Endocrine, nutritional and metabolic diseases | 15/42.8 | 4/80.0 | - | - | 19/44.1 |
| Diseases of the circulatory system | 5/14.3 | 1/20.0 | - | - | 6/13.9 |
| Diseases of the nervous system | 4/11.4 | 1/20.0 | 1/50.0 | - | 5/11.6 |
| Diseases of the digestive system | 4/11.4 | - | - | - | 4/9.3 |
| Diseases of the respiratory system | 1/2.8 | - | 1/50.0 | 1/100 | 3/6.9 |
| Musculoskelet disorders | 2/5.7 | - | 1/50.0 | - | 3/6.9 |
| Diseases of the eye | 3/8.5 | - | - | - | 3/6.9 |
| Mental and behavioural disorders | 2/5.7 | - | 1/50.0 | - | 3/6.9 |
| Neoplasms | 2/5.7 | - | - | - | 2/4.6 |
| Diseases of the genitourinary system | 1/2.8 | - | - | - | 1/2.3 |
| Diseases of the skin | 1/2.8 | - | - | - | 1/2.3 |
| EDSS Range | EDSS 0–3.5 | EDSS 4–8 | Test | p |
|---|---|---|---|---|
| N (%) | 69 (58.4) | 49 (41.6) | - | - |
| Age (mean ± SD) | 39.7 ± 8.5 | 46.0 ± 12.5 | t = −3.51 | <0.001 ** |
| Male/female (%) | 8.7/91.3 | 28.6/71.4 | χ2 = 8.04 | 0.01 ** |
| Years of MS disease (mean ± SD) | 8.8 ± 7.6 | 10.4 ± 7.2 | t = −1.71 | 0.33 |
| Corticosteroid treatment (y/n, %) | 91.3/8.7 | 97.9/2.1 | χ2 = 2.27 | 0.13 |
| Immunomodulatory drug (y/n, %) | 79.7/20.3 | 59.1/40.9 | χ2 = 5.89 | 0.02 * |
| RRMS n = 105 | PPMS and SPMS n = 25 | Ms Type Not Know n = 17 | Total n = 147 | Test (H Value) | p | |
|---|---|---|---|---|---|---|
| Overall wellness—functional abilities (1–5) * | 2.0 (1.0) | 2.0 (2.0) | 2.0 (2.0) | 2.0 (2.0) | 18.6 | <0.001 |
| Mobility-ability to walk | ||||||
| Ability to walk (1–4) | 1.0 (1.0) | 2.0 (0) | 1.0 1.(0) | 2.0 1.(0) | 21.3 | <0.001 |
| Ability to walk without aid (1–4) | 2.0 (3.0) | 5.0 (2.0) | 5.0 (0) | 3.0 (4.0) | 9.17 | 0.01 ** |
| Ability to walk without aid (% of time) | 1.0 (0.25) | 0.2 (0.75) | 1.0 (0.7) | 1.0 (0.5) | 18.02 | <0.001 |
| Use a cane, a single crutch, or hold onto another person (% of time) | 0 (0.3) | 0.8 (0.7) | 0 (1.0) | 0.1(0.8) | 17.36 | <0.001 |
| Use a walker or other bilateral support (% of time) | 0 (0) | 0.5 (1.0) | 0 (0.9) | 0 (0.3) | 12.38 | <0.001 |
| Use a wheelchair (% of time) | 0 (0) | 0 (0.3) | 0 (0) | 0 (0) | 7.12 | <0.02 * |
| Sensation | ||||||
| Right hand or arm (1–6) | 2.0 (1.0) | 2.0 (2.0) | 2.0 (2.0) | 2.0 (1.0) | 6.04 | 0.05 |
| Left hand or arm (1–6) | 1.0 (1.0) | 2.0 (1.0) | 2.0 (1.0) | 2.0 (1.0) | 2.72 | 0.25 |
| Right foot or leg (1–6) | 2.0 (1.0) | 2.0 (1.0) | 2.0 (1.0) | 2.0 (2.0) | 7.13 | 0.028 * |
| Left foot or leg (1–6) | 2.0 (1.0) | 2.0 (1.0) | 2.0 (1.0) | 2.0 (1.0) | 6.07 | 0.04 * |
| Strength † | ||||||
| Right arm (1–6) | 1.0 (1.0) | 2.0 (1.0) | 2.0 (2.0) | 1.0 (1.0) | 13.64 | 0.01 ** |
| Left arm (1–6) | 1.0 (1.0) | 1.0 (1.0) | 1.0 (1.0) | 1.0 (1.0) | 2.44 | 0.29 |
| Right leg (1–6) | 2.0 (1.0) | 2.0 (2.0) | 2.0 (2.0) | 2.0 (1.0) | 16.93 | <0.001 |
| Left leg (1–6) | 2.0 (1.0) | 2.0 (1.0) | 2.0 (1.0) | 2.0 (1.0) | 12.16 | <0.01 ** |
| Strength †† | ||||||
| Right arm (1–5) | 1.0 (1.0) | 2.0 (1.0) | 2.0 (1.0) | 1.0 (1.0) | 2.78 | 0.24 |
| Left arm (1–5) | 1.0 (1.0) | 1.0 (1.0) | 1.0 (1.0) | 1.0 (1.0) | 0.65 | 0.71 |
| Right leg (1–5) | 2.0 (1.0) | 2.0 (1.0) | 2.0 (1.0) | 2.0 (2.0) | 14.96 | <0.001 |
| Left leg (1–5) | 2.0 (1.0) | 2.0 (1.0) | 2.0 (1.0) | 2.0 (1.0) | 9.51 | 0.01 ** |
| Coordination | ||||||
| Arms (1–5) | 2.0 (2.0) | 2.0 (1.0) | 2.0 (1.0) | 2.0 (2.0) | 4.08 | 0.13 |
| Legs (1–5) | 2.0 (2.0) | 3.0 (2.0) | 3.0 (2.0) | 2.0 (2.0) | 14.36 | <0.001 |
| Balance when standing (1–5) | 2.0 (1.0) | 3.0 (1.0) | 3.0 (1.0) | 2.0 (2.0) | 13.85 | <0.001 |
| Balance when walking (1–5) | 2.0 (2.0) | 3.0 (1.0) | 3.0 (1.0) | 2.0 (2.0) | 21.97 | <0.001 |
| Balance when sitting (1–5) | 1.0 (0) | 1.0 (1.0) | 1.0 (1.0) | 1.0 (1.0) | 5.38 | 0.06 |
| Vision | ||||||
| Double vision (1–4) | 1.0 (1.0) | 1.0 (1.0) | 1.0 (1.0) | 1.0 (1.0) | 2.84 | 0.24 |
| Vision problems—right eye (1–4) | 1.0 (1.0) | 2.0 (1.0) | 2.0 (1.0) | 1.0 (1.0) | 8.46 | 0.01 * |
| Vision problems—left eye (1–4) | 1.0 (1.0) | 2.0 (2.0) | 2.0 (2.0) | 2.0 (1.0) | 7.21 | 0.02 * |
| Blind spot in vision (1–4) | 1.0 (0) | 1.0 (0) | 1.0 (0) | 1.0 (0) | 2.65 | 0.26 |
| Face and neck | ||||||
| Muscle weakness—right side (1–4) | 1.0 (0) | 1.0 (1.0) | 1.0 (1.0) | 1.0 (0) | 11.18 | <0.01 |
| Muscle weakness—left side (1–4) | 1.0 (0) | 1.0 (1.0) | 1.0 (1.0) | 1.0 (0) | 7.73 | 0.02 * |
| Feeling—right side (1–5) | 1.0 (0) | 1.0 (2.0) | 1.0 (2.0) | 2.0 (0) | 6.9 | 0.03 * |
| Feeling—left side (1–5) | 1.0 (0) | 1.0 (1.0) | 1.0 (1.0) | 2.0 (0) | 3.81 | 0.14 |
| Ability to speak (1–6) | 2.0 (1.0) | 1.0 (1.0) | 1.0 (1.0) | 1.0 (1.0) | 3.27 | 0.19 |
| Ability to swallow liquids and solids (1–4) | 1.0 (0) | 1.0 (1.0) | 1.0 (1.0) | 1.0 (0) | 2.94 | 0.22 |
| Hearing problems (1–4) | 1.0 (0) | 1.0 (1.0) | 1.0 (1.0) | 1.0 (0) | 4.15 | 0.12 |
| Bowel and bladder | ||||||
| Urinary urgency (1–5) | 2.0 (3.0) | 4.0 (1.0) | 4.0 (1.0) | 3.0 (3.0) | 12.69 | <0.001 |
| Urine leak (1–5) | 1.0 (1.0) | 2.0 (1.0) | 2.0 (1.0) | 1.0 (1.0) | 3.03 | 0.21 |
| Wearing a pad or use a urinal (yes/no) ¶ | 26/79 | 9/16 | 4/17 | 39/112 | χ2 = 1.10 | 0.49 |
| Start to urinate (1–6) | 1.0 (1.0) | 2.0 (2.0) | 2.0 (2.0) | 2.0 (1.0) | 4.65 | 0.11 |
| Constipation (1–3) | 2.0 (1.0) | 2.0 (1.0) | 2.0 (1.0) | 2.0 (1.0) | 1.55 | 0.45 |
| Bowel frequency (1–4) | 1.0 (1.0) | 1.0 (1.0) | 1.0 (1.0) | 1.0 (1.0) | 1.38 | 0.06 |
| Mood and thinking ability | ||||||
| Cognitive abilities (1–5) | 2.0 (1.0) | 2.0 (0) | 2.0 (0) | 2.0 (1.0) | 4.73 | 0.09 |
| Fatigue (1–4) | 2.0 (0) | 3.0 (1.0) | 3.0 (1.0) | 2.0 (1.0) | 9.37 | 0.01 ** |
| Little interest or pleasure in doing things (1–4) | 2.0 (1.0) | 2.0 (2.0) | 2.0 (2.0) | 2.0 (1.0) | 3.71 | 0.15 |
| Feeling down, depressed, or hopeless (1–4) | 2.0 (1.0) | 2.0 (2.0) | 2.0 (2.0) | 2.0 (1.0) | 3.54 | 0.17 |
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Jerković, A.; Pavelin, S.; Šoda, J.; Vujović, I.; Rogić Vidaković, M. Symptom-Level Disability Status Assessed with an Electronic Unsupervised Patient-Reported Expanded Disability Status Scale (ePR-EDSS) in Multiple Sclerosis Patients—The Example of Croatia. J. Clin. Med. 2022, 11, 4081. https://doi.org/10.3390/jcm11144081
Jerković A, Pavelin S, Šoda J, Vujović I, Rogić Vidaković M. Symptom-Level Disability Status Assessed with an Electronic Unsupervised Patient-Reported Expanded Disability Status Scale (ePR-EDSS) in Multiple Sclerosis Patients—The Example of Croatia. Journal of Clinical Medicine. 2022; 11(14):4081. https://doi.org/10.3390/jcm11144081
Chicago/Turabian StyleJerković, Ana, Sanda Pavelin, Joško Šoda, Igor Vujović, and Maja Rogić Vidaković. 2022. "Symptom-Level Disability Status Assessed with an Electronic Unsupervised Patient-Reported Expanded Disability Status Scale (ePR-EDSS) in Multiple Sclerosis Patients—The Example of Croatia" Journal of Clinical Medicine 11, no. 14: 4081. https://doi.org/10.3390/jcm11144081
APA StyleJerković, A., Pavelin, S., Šoda, J., Vujović, I., & Rogić Vidaković, M. (2022). Symptom-Level Disability Status Assessed with an Electronic Unsupervised Patient-Reported Expanded Disability Status Scale (ePR-EDSS) in Multiple Sclerosis Patients—The Example of Croatia. Journal of Clinical Medicine, 11(14), 4081. https://doi.org/10.3390/jcm11144081

