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多发性硬化症患者:疾病负担和成本研究。

Patients with multiple sclerosis: a burden and cost of illness study.

机构信息

Italian Multiple Sclerosis Foundation (AISM), Genoa, Italy.

The University of Siena, Siena, Italy.

出版信息

J Neurol. 2022 Sep;269(9):5127-5135. doi: 10.1007/s00415-022-11169-w. Epub 2022 May 23.

DOI:10.1007/s00415-022-11169-w
PMID:35604465
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9124746/
Abstract

BACKGROUND

Multiple sclerosis (MS) is a chronic neuroinflammatory and neurodegenerative disease negatively impacting patients' physical, psychological and social well-being with a significant economic burden.

OBJECTIVES

The study estimates MS burden and cost of illness in Italy from a societal perspective in 2019.

METHODS

Information on the impact of the disease on daily activities, symptoms, employment, resource utilization and the role of caregivers was collected through questionnaires completed by 944 patients and caregivers. Results were stratified according to both disease severity and payer. Mean costs and overall costs were extrapolated from the sample to the Italian MS population considering published distribution of severity.

RESULTS

The study showed a great impact of the disease on daily and work activities increasing with the disability. The overwhelming burden of fatigue emerged. Mean annual costs were estimated at €39,307/patient (€29,676, €43,464 and €53,454 in mild, moderate and severe cases, respectively). Direct healthcare costs were the major component (€21,069), followed by indirect costs (€15,004). The overall cost of the disease in Italy was €4.8 billion. The National Healthcare System (NHS) sustained most of the costs (80%), most notably direct healthcare costs, while patients paid almost all non-healthcare expenses.

CONCLUSIONS

This study confirmed that MS carries a substantial burden to patients and society, highlighting the need for awareness of this disease.

摘要

背景

多发性硬化症(MS)是一种慢性神经炎症和神经退行性疾病,对患者的身体、心理和社会福祉产生负面影响,同时带来巨大的经济负担。

目的

本研究从社会角度估计了 2019 年意大利多发性硬化症的疾病负担和疾病经济负担。

方法

通过问卷收集了 944 名患者和护理人员关于疾病对日常活动、症状、就业、资源利用和护理人员作用的影响的信息。结果根据疾病严重程度和支付方进行分层。根据已发表的严重程度分布,从样本中推断出意大利多发性硬化症患者的平均成本和总体成本。

结果

研究表明,疾病对日常和工作活动的影响很大,随着残疾程度的增加而增加。疲劳的负担非常沉重。估计每位患者的年平均费用为 39307 欧元(轻度、中度和重度病例分别为 29676 欧元、43464 欧元和 53454 欧元)。直接医疗保健成本是主要组成部分(21069 欧元),其次是间接成本(15004 欧元)。意大利多发性硬化症的总疾病成本为 48 亿欧元。国家医疗保健系统(NHS)承担了大部分费用(80%),尤其是直接医疗保健费用,而患者支付了几乎所有非医疗保健费用。

结论

本研究证实多发性硬化症给患者和社会带来了巨大的负担,强调了提高对这种疾病认识的必要性。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3bf6/9363361/04b642962893/415_2022_11169_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3bf6/9363361/df0a9c90715e/415_2022_11169_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3bf6/9363361/04b642962893/415_2022_11169_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3bf6/9363361/df0a9c90715e/415_2022_11169_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3bf6/9363361/04b642962893/415_2022_11169_Fig2_HTML.jpg

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