Abstract
BACKGROUND: Digital patient registries are actively used to monitor long-term diseases. However, their potential in symptom management remains underused. OBJECTIVE: This study aimed to report on the Finnish registry-based protocol to screen and manage cognitive symptoms and fatigue in multiple sclerosis (MS). Data on a sample collected during the first 2 years are presented. METHODS: At the beginning of 2021, a Finnish protocol to screen and manage patient-perceived concerns related to cognition and fatigue, together with self-assessment of disease severity, symptoms, and quality of life (QoL) annually, was introduced. The Symbol Digit Modalities Test (SDMT), the Multiple Sclerosis Neuropsychological Questionnaire (MSNQ), the Fatigue Scale for Motor and Cognitive Functions (FSMC), as well as the Patient-Reported Expanded Disability Status Scale, the Visual Analog Scales, and the Euro QoL-5 Dimension were implemented into the Finnish MS registry. To support symptom management, patients were offered feedback reports based on the results of the FSMC and the MSNQ. The implementation of the protocol was evaluated in 5 Finnish wellbeing services counties. RESULTS: Our sample from the beginning of 2021 to the end of 2022 includes data on 430 patients. A total of 86 (20%) patients have been assessed with the SDMT, whereas 329 (76.5%) patients have filled out the FSMC, and 172 (40.0%) patients have completed the MSNQ. The mean SDMT score is 49.0 (SD 13.56), MSNQ score is 35.3 (SD 9.39), total FSMC score is 63.0 (SD 22.49), and subscores for motor and cognitive fatigue are 31.6 (SD 11.43) and 31.5 (SD 11.68), respectively. The SDMT did not correlate with the MSNQ or the FSMC. Instead, the SDMT, MSNQ, and the FSMC correlated significantly with QoL. CONCLUSIONS: Fatigue and cognitive problems have an effect on QoL. In our preliminary sample, patient reports of cognitive problems and especially fatigue were conducted more frequently than the objective evaluation of processing speed. Although the Finnish MS registry offers a digital platform for the systematic screening of fatigue and cognitive problems, further education is needed to support the implementation of the protocol.