ArticleInternational journal of MS care2024
MyMS: An Interface for Patient-Reported Outcomes for Finnish Individuals With Multiple Sclerosis.
Article in International journal of MS care, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
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Who cites it
7 citing papers in PubMed.
- Digital Health Literacy and Health Technology Readiness Among People With Epilepsy or Multiple Sclerosis: Cross-Sectional Study.JMIR human factors · 2026Article
- Adult-onset and late-onset multiple sclerosis in older adults in a Finnish university hospital.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2026Article
- Health Information Literacy as a Determinant of Digital Self-Efficacy.Health literacy research and practice · 2026Article
- Finnish Registry-Based Protocol for Screening and Management of Fatigue and Cognitive Problems in Multiple Sclerosis: Observational Study.JMIR human factors · 2025Observational
- The Lithuanian multiple sclerosis registry: current framework and quality challenges.Frontiers in neurologyArticle
- Evaluation of patient-perceived fatigue in multiple sclerosis utilizing the Finnish MS registry.Multiple sclerosis journal - experimental, translational and clinicalArticle
- Feasibility of a registry-integrated eHealth program for managing fatigue and cognitive problems in multiple sclerosis.Multiple sclerosis journal - experimental, translational and clinicalArticle
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5 authors.
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Abstract
backgroundPatient-generated data are a cornerstone of individualized multiple sclerosis (MS) treatment. MyMS, an interface for patient-reported outcomes (PROs) was developed by the Finnish MS Register to enable systematic collection of PROs.
methodsMyMS collects data on demographics, lifestyle factors, disease-related factors, and validated questionnaires, including the Quality of Life Questionnaire (15D), the Multiple Sclerosis Impact Scale (MSIS-29), and the Fatigue Severity Scale (FSS). At the end of 2020, the patient-reported Expanded Disability Status Scale (PREDSS), the EuroQOL-5 Dimension (EQ-5D), the Fatigue Scale for Motor and Cognitive Functions (FSMC), and the Multiple Sclerosis Neuropsychological Questionnaire (MSNQ) were added.
resultsAs of January 1, 2023, 1201 individuals with MS (79% female) have added data to MyMS. Of the validated PRO measures (PROMs), the 15D, MSIS-29, and FSS are the most used. The mean PREDSS score is 3.0 and median disease duration is 6.4 years. According to the existing PROMs, patients report mildly compromised quality of life and problems with fatigue and cognition.
conclusionsThe patient interface of the Finnish MS Register consists of data from 17 of 21 counties with well-being services. The interface is used by 10% of Finnish individuals with MS. The addition of the PREDSS, EQ-5D, FSMC, and MSNQ to the interface has increased health care professional and patient interest in the use of PROMs. We suggest that PROs should be integrated into electronic health records to improve shared decision-making and diminish documentation burden.
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