JMIR Publications

ABSTRACT

Background:

Digital patient registries are actively used in the monitoring of long-term diseases. The potential of the registries in the management of symptoms is underutilized.

Objective:

The present paper reports the Finnish registry-based procedure to screen and manage cognitive symptoms and fatigue in multiple sclerosis (MS). The data collected during the first two years is presented.

Methods:

The Symbol Digit Modalities Test (SDMT), the Multiple Sclerosis Neuropsychological Questionnaire (MSNQ), and the Fatigue Scale for Motor and Cognitive Functions (FSMC) were implemented into the Finnish MS registry to screen symptoms related to cognition and fatigue. For self-management purposes, feedback reports based on the results on the MSNQ and the FSMC were created. To assess patient-perceived disease severity, disability, and quality of life (QoL), the Patient-Reported Expanded Disability Status Scale (PREDSS), the Visual Analogue Scales (VAS), and the Euro Quality of Life – 5 Dimension (EQ-5D) were implemented into the registry.

Results:

At the end of 2020, Finnish procedure to screen and manage patient-perceived concerns related to cognition and fatigue together with self-assessment of disease status, symptoms, and QoL annually was introduced. By the beginning of 2023, 134 patients have been assessed with the SDMT. 329 patients have filled out the FSMC and 172 patients the MSNQ at least once and have received the corresponding feedback reports. The mean SDMT score is 49.6, MSNQ score 35.3, total FSMC score 63.0, and sub-score for motor and cognitive fatigue 31.6 and 31.5, respectively.

Conclusions:

The Finnish MS registry offers a digital platform for systematic screening and self-management of fatigue and cognitive problems in MS. Patient registries should be better recognized as e-Health solutions.