Papukchieva Steffeni, Kahn Maria, Eberl Markus, Friedrich Benjamin, Joschko Natalie, Ziemssen Tjalf
Temedica GmbH, 80687 Munich, Germany.
Roche Pharma AG, 79639 Grenzach-Wyhlen, Germany.
J Pers Med. 2024 Apr 12;14(4):409. doi: 10.3390/jpm14040409.
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.
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% ( = 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.
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.
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.
随着多发性硬化症（MS）病例数量的增加以及卫生系统压力的增大，像Brisa这样专门为MS患者设计的数字伴侣应用程序在患者就医过程中可以发挥重要作用。这些应用程序能够收集实时纵向数据，这对于我们理解MS的病理生理学和病程发展至关重要。
这项回顾性描述性分析的数据来自于2021年8月6日至2022年9月8日期间注册的Brisa用户。在这些独特用户中，37.7%（=1593）符合纳入标准，包括用药信息和人口统计学信息，并跟踪了一种或多种症状和/或患者报告的结局。用户被分为中效治疗用户、高效治疗用户和奥瑞珠单抗用户，并对症状和患者报告结局的报告频率及评分进行了分析。
最大的Brisa用户队列（405人）报告使用奥瑞珠单抗进行治疗，且大多在调查前2至5年被诊断。奥瑞珠单抗用户（OU）、高效治疗用户（HETU）和中效治疗用户（METU）报告最多的MS症状相似。OU平均报告症状和回答问卷的频率更高。HETU和OU的基线评分相似，而METU的基线评分相比之下略低。在对OU的进一步分析中，残疾评分随年龄增长而增加；26至45岁的用户疼痛评分高于18至25岁的用户。不同年龄组在生活质量、肠道控制和视力方面未发现显著差异。
这些发现表明，Brisa队列的特征与其他研究和登记处的结果相似，能够提供日常疾病管理的代表性概述。因此，这些结果可以弥合临床研究与真实患者体验之间的差距，但同时也提出了新的问题，例如早期强化治疗方法的使用频率以及基线特征和选择特定治疗的原因是否会随着时间推移导致不同的结果。回答这些问题需要进一步的研究和分析。
