Dillon Paul, Heer Yanic, Karamasioti Eleni, Muros-Le Rouzic Erwan, Marcelli Guiseppe, Di Maio Danilo, Braune Stefan, Kobelt Gisela, Wasem Jürgen
PricewaterhouseCoopers (PwC), Zurich, Switzerland.
NeuroTransData (NTD) GmbH, Neuburg an der Donau, Germany.
Mult Scler J Exp Transl Clin. 2023 Jul 24;9(3):20552173231187810. doi: 10.1177/20552173231187810. eCollection 2023 Jul-Sep.
Multiple sclerosis (MS) is a progressively debilitating neurologic disease that poses significant costs to the healthcare system and workforce.
To evaluate the impact of MS disease progression on societal costs and quality of life (QoL) using data from the German NeuroTransData (NTD) MS registry.
Cross-sectional cohort study. The cost cohort included patients with MS disability assessed using Expanded Disability Status Scale (EDSS) in 2019 while the QoL cohort included patients assessed using EDSS and EuroQol-5 Dimension 5-Levels between 2009 and 2019. Direct and indirect medical, and non-medical resource use was quantified and costs derived from public sources.
Within the QoL cohort ( = 9821), QoL worsened with increasing EDSS. Within the cost cohort ( = 7286), increasing resource use with increasing EDSS was observed. Societal costs per patient, excluding or including disease-modifying therapies, increased from €5694 or €19,315 at EDSS 0 to 3.5 to €25,419 or €36,499 at EDSS 4 to 6.5, and €52,883 or €58,576 at EDSS 7 to 9.5. In multivariate modeling, each 0.5-step increase in EDSS was significantly associated with increasing costs, and worsening QoL.
This study confirms the major socioeconomic burden associated with MS disability progression. From a socioeconomic perspective, delaying disability progression may benefit patients and society.
多发性硬化症（MS）是一种逐渐使人衰弱的神经系统疾病，给医疗保健系统和劳动力带来了巨大成本。
利用德国神经传输数据（NTD）MS登记处的数据，评估MS疾病进展对社会成本和生活质量（QoL）的影响。
横断面队列研究。成本队列包括2019年使用扩展残疾状态量表（EDSS）评估MS残疾的患者，而生活质量队列包括2009年至2019年期间使用EDSS和欧洲五维度健康量表（EuroQol-5 Dimension 5-Levels）评估的患者。对直接和间接医疗以及非医疗资源使用进行量化，并从公共来源得出成本。
在生活质量队列（n = 9821）中，随着EDSS评分增加，生活质量恶化。在成本队列（n = 7286）中，观察到随着EDSS评分增加，资源使用也增加。每位患者的社会成本，不包括或包括疾病修正治疗，从EDSS评分为0至3.5时的5694欧元或19315欧元增加到EDSS评分为4至6.5时的25419欧元或36499欧元，以及EDSS评分为7至9.5时的52883欧元或58576欧元。在多变量模型中，EDSS每增加0.5个等级与成本增加和生活质量恶化显著相关。
本研究证实了与MS残疾进展相关的主要社会经济负担。从社会经济角度来看，延缓残疾进展可能使患者和社会受益。
