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

Area of Science:

• Neurology
• Digital Health
• Patient-Reported Outcomes

Background:

• Patient-generated data are crucial for personalized multiple sclerosis (MS) treatment.
• The Finnish MS Register developed MyMS for systematic collection of patient-reported outcomes (PROs).

Purpose of the Study:

• To describe the MyMS patient interface for collecting PROs in MS.
• To report on the utilization and initial findings from the MyMS system.

Main Methods:

• MyMS collects demographic, lifestyle, and disease data.
• Validated questionnaires include Quality of Life Questionnaire (15D), MS Impact Scale (MSIS-29), and Fatigue Severity Scale (FSS).
• Additional PRO measures added include PREDSS, EQ-5D, FSMC, and MSNQ.

Main Results:

• As of January 2023, 1201 individuals with MS contributed data.
• The 15D, MSIS-29, and FSS are the most utilized PRO measures.
• Patients report mild quality of life issues, fatigue, and cognitive problems.

Conclusions:

• MyMS covers 10% of Finnish individuals with MS across 17 counties.
• New PROs increased engagement; integration into EHRs is suggested for shared decision-making.
• PROs enhance shared decision-making and reduce documentation burden.