Oreja-Guevara Celia, Meca-Lallana José E, Gómez-Estévez Irene, Ara José-Ramón, Pérez Miguel Ángel Hernández, Gil Julia Gracia, Torres Ana María Alonso, de la Fuente Belén Pilo, Ramió-Torrentà Lluís, Madueño Sara Eichau, Gascón-Giménez Francisco, Casanova Bonaventura, Martínez-Yélamos Sergio, Valcárcel Marta Aguado, Ginés Maria Luisa Martínez, Montero Yasmina El Berdei, Real Ana María López, González-Quintanilla Vicente, de Silanes Carlos Lopez, Martínez-Rodríguez José Enrique, Costa-Frossard Lucienne, Redondo Moisés Garcés, Fontcuberta Andrés Labiano, Castellanos-Pinedo Fernando, Merino Juan Antonio García, Fernández Carmen Muñoz, Castillo-Triviño Tamara, Meca-Lallana Virginia, Martínez Joaquín Peña, Rodríguez-Antigüedad Alfredo, González José María Prieto, Morales Eduardo Agüera, Molina Inmaculada Pérez, Sánchez Dulce M Solar, Varo Nicolás Herrera, Vázquez Marta Aguirre, Barrios José Manuel Rodríguez, Río Jordi
Neurology Department, CSUR Multiple Sclerosis, Hospital Universitario Clínico San Carlos, IdISCC, Planta Sexta Norte, Calle del Prof. Martín Lagos, Madrid, 28040, Spain.
Medical Department, Medicine Faculty, Complutense University of Madrid (UCM), Madrid, Spain.
BMC Health Serv Res. 2025 Apr 10;25(1):525. doi: 10.1186/s12913-025-12592-1.
To estimate the socioeconomic burden of people with secondary progressive multiple sclerosis (pwSPMS), considering direct health care, direct non-health care, and indirect costs, and to evaluate the relationship between costs and patients' functional outcomes.
Observational, cross-sectional, multicenter study with retrospective real-life clinical practice data collection from pwSPMS visiting the neurology services of 34 hospitals during 2019-2020. Clinical data included Expanded Disability Status Scale scores, number of relapses, magnetic resonance imaging, disease-modifying treatment (DMT), symptoms, and comorbidities from 24 months before the study visit. Resource use and allied costs were collected 12 months before the study visit. Patient-reported outcomes, functional and cognitive scales were also collected.
70% of pwSPMS used primary care services, and nearly 50% needed assistance in a daycare or rehabilitation center. Almost 60% of the participants were receiving DMT at the study visit, and 80% needed support for domestic/housekeeping tasks. More than 90% were inactive at work, with nearly 80% taking early retirement. The estimated total annual cost per pwSPMS in Spain was almost €41,500, of which more than 50% (€21,400) were indirect costs, followed by direct health care costs (30%, €11,300), and, finally, direct non-health care costs (about 20%, €8,800). Older patients with severe disabilities and worse functional outcomes incurred higher costs.
SPMS is a major burden on health care systems, patients, and society as a whole. Health care and societal policies should be aimed at improving the SPMS care pathway and minimizing patients' funding of direct non-health care costs.
The trial is a non-interventional study. The NCC code is CBAF312AES01/NOV-EMS-2019-01.
考虑直接医疗保健、直接非医疗保健和间接成本，估算继发进展型多发性硬化症患者（pwSPMS）的社会经济负担，并评估成本与患者功能结局之间的关系。
这是一项观察性、横断面、多中心研究，通过回顾性收集2019年至2020年期间在34家医院神经科就诊的pwSPMS的实际临床实践数据。临床数据包括研究就诊前24个月的扩展残疾状态量表评分、复发次数、磁共振成像、疾病修饰治疗（DMT）、症状和合并症。在研究就诊前12个月收集资源使用情况和相关成本。还收集了患者报告的结局、功能和认知量表。
70%的pwSPMS使用初级保健服务，近50%的患者需要日托或康复中心的帮助。近60%的参与者在研究就诊时正在接受DMT治疗，80%的患者需要家务/家政任务方面的支持。超过90%的人工作不活跃，近80%的人提前退休。西班牙每位pwSPMS的估计年度总成本约为41,500欧元，其中超过50%（21,400欧元）为间接成本，其次是直接医疗保健成本（30%，11,300欧元），最后是直接非医疗保健成本（约20%，8,800欧元）。残疾严重且功能结局较差的老年患者成本更高。
继发进展型多发性硬化症对医疗保健系统、患者及整个社会都是一项重大负担。医疗保健和社会政策应旨在改善继发进展型多发性硬化症的护理途径，并尽量减少患者直接非医疗保健成本的支出。
该试验为非干预性研究。NCC代码为CBAF312AES01/NOV - EMS - 2019 - 01。
