Large-scale cross-sectional online survey on patient-neurologist communication, burden of disease assessment and disease monitoring in people with multiple sclerosis

  • Background Management of multiple sclerosis (MS) requires a high level of communication between health care professionals (HCPs) and people with MS (pwMS) including profound investigation and discussion of symptoms to identify therapeutic needs. For treatment decisions, monitoring of disease activity is important, in this respect self-monitoring devices and apps, as well as magnetic resonance imaging are important tools. Methods MS Perspectives is a cross-sectional online survey conducted in Germany which was designed to collect data, among others, on the communication between pwMS and HCPs regarding treatment goals, symptom assessment, usage of devices and apps to self-monitor health functions, as well as to identify patients' attitude toward the role of magnetic resonance imaging (MRI). Between December 2021 and February 2022, 4,555 pwMS completed the survey. Results In total, 63.7% of participants reported that treatment goals have been discussed with their HCPs. SymptomsBackground Management of multiple sclerosis (MS) requires a high level of communication between health care professionals (HCPs) and people with MS (pwMS) including profound investigation and discussion of symptoms to identify therapeutic needs. For treatment decisions, monitoring of disease activity is important, in this respect self-monitoring devices and apps, as well as magnetic resonance imaging are important tools. Methods MS Perspectives is a cross-sectional online survey conducted in Germany which was designed to collect data, among others, on the communication between pwMS and HCPs regarding treatment goals, symptom assessment, usage of devices and apps to self-monitor health functions, as well as to identify patients' attitude toward the role of magnetic resonance imaging (MRI). Between December 2021 and February 2022, 4,555 pwMS completed the survey. Results In total, 63.7% of participants reported that treatment goals have been discussed with their HCPs. Symptoms worsening in the past 12 months independent of relapses was more often reported by pwMS than inquired by HCPs, according to patients' report. Devices or apps for health monitoring were used by less than half of participants. Frequency of MRI controls was much lower in participants with longer compared to shorter disease duration (47.5 vs. 86.3%). The proportion of patients with annual or semiannual scans was highest among pwMS receiving infusion therapy (93.5%), followed by oral medication (82.5%) and injectables (73.4%), and lowest for pwMS without immunotherapy (58.2%). Conclusion MS Perspectives identified a rather low patient involvement regarding treatment goals and symptom assessment in clinical practice. Regarding this and our findings for health self-monitoring and MRI usage, strategies for improving patient-HCP communication and disease monitoring may be considered.show moreshow less

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Metadaten
Author:Monika ChristGND, Katrin Schuh, Antonios BayasORCiDGND
URN:urn:nbn:de:bvb:384-opus4-1010620
Frontdoor URLhttps://opus.bibliothek.uni-augsburg.de/opus4/101062
ISSN:1664-2295OPAC
Parent Title (English):Frontiers in Neurology
Publisher:Frontiers Media S.A.
Type:Article
Language:English
Date of first Publication:2023/01/04
Publishing Institution:Universität Augsburg
Release Date:2023/02/01
Tag:multiple sclerosis; survey; patient communication; magnetic resonance imaging; digital technology
Volume:13
First Page:1093352
DOI:https://doi.org/10.3389/fneur.2022.1093352
Institutes:Medizinische Fakultät
Medizinische Fakultät / Universitätsklinikum
Medizinische Fakultät / Lehrstuhl für Neurologie
Dewey Decimal Classification:6 Technik, Medizin, angewandte Wissenschaften / 61 Medizin und Gesundheit / 610 Medizin und Gesundheit
Licence (German):CC-BY 4.0: Creative Commons: Namensnennung (mit Print on Demand)