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德国使用BRISA(一款多发性硬化症专用应用程序)的多发性硬化症患者的人口统计学模式

Demographic Patterns of MS Patients Using BRISA: An MS-Specific App in Germany.

作者信息

Balakrishnan Preetha, Groenberg Jannis, Jacyshyn-Owen Elizabeth, Eberl Markus, Friedrich Benjamin, Joschko Natalie, Ziemssen Tjalf

机构信息

Temedica GmbH, 80636 Munich, Germany.

Kineo GmbH, 10969 Berlin, Germany.

出版信息

J Pers Med. 2022 Jul 1;12(7):1100. doi: 10.3390/jpm12071100.

DOI:10.3390/jpm12071100
PMID:35887597
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9325101/
Abstract

BACKGROUND

Multiple sclerosis (MS) is a chronic, progressive neurological autoimmune disease impacting quality of life. BRISA is an app designed to help MS patients in Germany track their disease course by symptom-monitoring. This study aimed to understand demographic and health-related characteristics of BRISA users.

METHODS

Demographic data provided by 2095 users were analyzed to describe characteristics such as sex, age, type of MS, and medication. The distribution of tracked symptoms based on age and time since diagnosis were studied. Furthermore, the covariance of specific symptom pairs was analyzed.

RESULTS

BRISA users are predominantly female and between 26 and 55 years old. Relapsing-remitting MS was the most prevalent form of MS. First-line category 1 drugs were most frequently used, followed by high-efficacy category 3 drugs (e.g., monoclonal antibodies). The relative frequencies of use of category 1 and category 2 drugs (e.g., spingosine-1-phosphate-receptor modulators) significantly altered with time since diagnosis. Fatigue, concentration disorders, tingling, forgetfulness, and pain were the top five symptoms affecting users.

CONCLUSION

The results highlight the diversity among MS patients and the need for extensive cohort characterization in the real-world scenario. In-depth analysis could help in identifying novel insights that could aid in disease management.

摘要

背景

多发性硬化症(MS)是一种慢性进行性神经自身免疫性疾病,会影响生活质量。BRISA是一款旨在帮助德国MS患者通过症状监测来跟踪其疾病进程的应用程序。本研究旨在了解BRISA用户的人口统计学特征和与健康相关的特征。

方法

对2095名用户提供的人口统计学数据进行分析,以描述性别、年龄、MS类型和用药等特征。研究了基于年龄和确诊后时间的跟踪症状分布情况。此外,还分析了特定症状对的协方差。

结果

BRISA用户以女性为主,年龄在26至55岁之间。复发缓解型MS是最常见的MS形式。一线1类药物使用最为频繁,其次是高效3类药物(如单克隆抗体)。1类和2类药物(如鞘氨醇-1-磷酸受体调节剂)的相对使用频率随确诊后时间显著变化。疲劳、注意力障碍、刺痛、健忘和疼痛是影响用户的五大症状。

结论

研究结果突出了MS患者之间的多样性以及在现实场景中进行广泛队列特征描述的必要性。深入分析有助于识别新的见解,从而有助于疾病管理。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8d66/9325101/1543b1aa43e0/jpm-12-01100-g006.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8d66/9325101/852e1792560d/jpm-12-01100-g001.jpg
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https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8d66/9325101/1543b1aa43e0/jpm-12-01100-g006.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8d66/9325101/852e1792560d/jpm-12-01100-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8d66/9325101/5f02e4cd0afc/jpm-12-01100-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8d66/9325101/78f3ca820bd0/jpm-12-01100-g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8d66/9325101/ad5c779b4e44/jpm-12-01100-g004.jpg
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本文引用的文献

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Front Immunol. 2021 Dec 7;12:795574. doi: 10.3389/fimmu.2021.795574. eCollection 2021.
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Implementation study of the 2021 German guideline for diagnosis and treatment of multiple sclerosis.2021 年德国多发性硬化症诊断与治疗指南实施研究。
Mult Scler Relat Disord. 2022 Jan;57:103434. doi: 10.1016/j.msard.2021.103434. Epub 2021 Dec 3.
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Association Between Time Spent Outdoors and Risk of Multiple Sclerosis.
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Neurology. 2022 Jan 18;98(3):e267-e278. doi: 10.1212/WNL.0000000000013045. Epub 2021 Dec 8.
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Digital Biomarkers in Multiple Sclerosis.多发性硬化症中的数字生物标志物
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