MyMS: An Interface for Patient-Reported Outcomes for Finnish Individuals With Multiple Sclerosis

Päivi Hämäläinen; Matias Viitala; Hanna Kuusisto; Juhani Ruutiainen; Merja Soilu-Hänninen

doi:10.7224/1537-2073.2023-082

MyMS: An Interface for Patient-Reported Outcomes for Finnish Individuals With Multiple Sclerosis

Int J MS Care. 2024 Oct 7;26(Q4):273-280. doi: 10.7224/1537-2073.2023-082. eCollection 2024 Oct.

Authors

Päivi Hämäläinen^{1

2

3}, Matias Viitala^{4

3}, Hanna Kuusisto^{5

6}, Juhani Ruutiainen^{7

2

8}, Merja Soilu-Hänninen^{7

8}

Affiliations

¹ From the Department of Psychology and Speech-Language Pathology, University of Turku, Turku, Finland.
² The Finnish Neuro Society, Masku, Finland.
³ StellarQ Ltd, Turku, Finland.
⁴ Department of Mathematics and Statistics, University of Turku, Turku, Finland.
⁵ Department of Neurology, Tampere University Hospital, Tampere, Finland.
⁶ Department of Health and Social Management, University of Eastern Finland, Kuopio, Finland.
⁷ Division of Clinical Neurosciences, University of Turku, Turku, Finland.
⁸ Turku University Hospital Neurocenter, Turku, Finland.

Abstract

Background: Patient-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.

Methods: MyMS 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.

Results: As 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.

Conclusions: The 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.

Keywords: Finnish MS Register; patient-generated data; patient-reported outcomes.

Grants and funding

FINANCIAL DISCLOSURES: The study was financially supported by Janssen-Cilag Oy. The funder had no role in or influence on any aspect of the study, including data collection, data analysis, writing of the manuscript, and decision to publish. Preparation of this manuscript was funded in part by the Strategic Research Council within the Academy of Finland (funding No. 358415). Efforts to increase the use of the Finnish MS registry have received funding from Biogen Idec, Merck, Novartis, Sanofi Genzyme, Roche, Teva, and Business Finland.