Tjalf Ziemssen
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Articles (11)
Background: With a rising number of multiple sclerosis (MS) cases and increasing pressure on health systems, digital companion apps like Brisa, designed specifically for people with MS, can play an important role in the patient journey. These apps enable the collection of real-time longitudinal data that are critical to our understanding of the pathophysiology and progression of MS. Methods: This retrospective, descriptive analysis consists of data from Brisa users who registered between 6 August 2021 and 8 September 2022. Of the unique users, 37.7% (n = 1593) fulfilled the inclusion criteria including information about medication and demographics and tracked one or more symptoms and/or patient-reported outcomes. Users were classified as moderate-efficacy treatment users, high-efficacy treatment users and ocrelizumab users, and the reporting frequency and scores of symptoms and patient-reported outcomes were analyzed. Results: The largest cohort of Brisa users (405) reported treatment with ocrelizumab and were mostly diagnosed 2–5 years before the survey. The most reported MS symptoms were similar between OUs (ocrelizumab users), HETUs (high-efficacy treatment users) and METUs (moderate-efficacy treatment users). OUs on average reported symptoms and answered questionnaires more frequently. Baseline scores between HETUs and OUs were similar, whereas baseline scores of METUs were slightly lower in comparison. In a further analysis of OUs, disability scores increased with age; users aged 26–45 years had higher pain scores than 18–25-year-olds. No significant differences were found in quality of life, bowel control and vision between age groups. Conclusion: These findings show that the characteristics of the Brisa cohort are similar to the results of other studies and registries and can provide a representative overview of everyday disease management. Thereby, these results can bridge the gap between clinical research and real patient experience, but they also raise new questions, such as how often the hard-and-early therapy approach is already used and whether baseline characteristics and reasons for choosing a particular treatment contribute to the different outcomes over time. Answering these questions requires further research and analysis.
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2024
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2023
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2023
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2023
Collaborators (9)
Tammy Jiang
Boston University School of Public Health
Roland von Känel
University of Zurich
Amra Jujic
Lund University
Martin Magnusson
Senior Consultant, associate professor.
Skånes universitetssjukhus Lund
Peter Nilsson
Professor
Umeå Universitet Medicinska fakulteten
Martin Magnusson
Associate professor / lecturer
Lund University
Tobias Bopp
W3 Professor and Chair
University Medical Center of the Johannes Gutenberg University Mainz
Katrin Trentzsch
Technische Universität Dresden
Emily Hickmann
Technische Universität Dresden
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