Christ Monika, Schuh Katrin, Bayas Antonios
Department of Neurology, Faculty of Medicine, University of Augsburg, Augsburg, Germany.
Novartis Pharma GmbH, Nuremberg, Germany.
Front Neurol. 2023 Jan 4;13:1093352. doi: 10.3389/fneur.2022.1093352. eCollection 2022.
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.
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.
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%).
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.
多发性硬化症（MS）的管理需要医疗保健专业人员（HCPs）与MS患者（pwMS）之间进行高度沟通，包括对症状进行深入调查和讨论以确定治疗需求。对于治疗决策而言，监测疾病活动很重要，在这方面，自我监测设备和应用程序以及磁共振成像都是重要工具。
“MS视角”是在德国进行的一项横断面在线调查，旨在收集有关pwMS与HCPs之间在治疗目标、症状评估、用于自我监测健康功能的设备和应用程序的使用情况等方面的沟通数据，以及确定患者对磁共振成像（MRI）作用的态度。在2021年12月至2022年2月期间，4555名pwMS完成了该调查。
总体而言，63.7%的参与者报告称已与他们的HCPs讨论过治疗目标。据患者报告，pwMS报告在过去12个月中独立于复发而恶化的症状比HCPs询问的更为常见。不到一半 的参与者使用了健康监测设备或应用程序。与疾病持续时间较短的参与者相比，疾病持续时间较长的参与者进行MRI检查的频率要低得多（47.5%对86.3%）。接受输液治疗的pwMS中，每年或每半年进行扫描的患者比例最高（93.5%），其次是口服药物治疗的患者（82.5%）和注射治疗的患者（73.4%），未接受免疫治疗的pwMS比例最低（58.2%）。
“MS视角”调查发现，在临床实践中，患者在治疗目标和症状评估方面的参与度较低。鉴于此以及我们在健康自我监测和MRI使用方面的发现，可能需要考虑改善患者与HCP沟通及疾病监测的策略。
