Institut Català de la Salut
[Oreja-Guevara C] Neurology Department, CSUR Multiple Sclerosis, Hospital Universitario Clínico San Carlos, IdISCC, Madrid, Spain. Medical Department, Medicine Faculty, Complutense University of Madrid (UCM), Madrid, Spain. [Meca-Lallana JE] Neurology Department, CSUR Multiple Sclerosis and Clinical Neuroimmunology Unit, Virgen de La Arrixaca Clinical University Hospital, IMIB-Arrixaca, Murcia, Spain. [Gómez-Estévez I] Neurology Department, CSUR Multiple Sclerosis, Hospital Universitario Clínico San Carlos, IdISCC, Madrid, Spain. [Ara JR] Neurology Department, Miguel Servet University Hospital, Zaragoza, Spain. [Hernández Pérez MÁ] Neurology Department, Nuestra Señora de La Candelaria University Hospital, Santa Cruz de Tenerife, Spain. [Gracia Gil J] Neurology Department, Albacete University Hospital Complex, Albacete, Spain. [Río J] Servei de Neurologia-Neuroimmunologia, Centre d’Esclerosi Múltiple de Catalunya (CEMCAT), Barcelona, Spain. Vall d’Hebron Hospital Universitari, Barcelona, Spain
Vall d'Hebron Barcelona Hospital Campus
2025-05-22T08:09:28Z
2025-05-22T08:09:28Z
2025-04-02
Direct costs; Progressive multiple sclerosis; Socioeconomic burden
Costos directes; Esclerosi múltiple progressiva secundària; Càrrega socioeconòmica
Costos directos; Esclerosis múltiple progresiva secundaria; Carga socioeconómica
Background 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. Methods 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. Results 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. Conclusions 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. Trial registration The trial is a non-interventional study. The NCC code is CBAF312AES01/NOV-EMS-2019–01.
This study was funded by Novartis Farmacéutica, S.A. The funder had the following involvement with the study: study design, data collection and analysis, decision to publish and preparation of the manuscript.
Article
Published version
English
Esclerosi múltiple - Tractament; Assistència sanitària - Cost; DISEASES::Nervous System Diseases::Autoimmune Diseases of the Nervous System::Demyelinating Autoimmune Diseases, CNS::Multiple Sclerosis::Multiple Sclerosis, Chronic Progressive; Other subheadings::Other subheadings::/therapy; HEALTH CARE::Health Care Quality, Access, and Evaluation::Delivery of Health Care::Health Care Costs; HEALTH CARE::Health Care Quality, Access, and Evaluation::Quality of Health Care::Health Care Evaluation Mechanisms::Data Collection::Surveys and Questionnaires::Health Surveys::Health Status Indicators::Cost of Illness; ENFERMEDADES::enfermedades del sistema nervioso::enfermedades autoinmunitarias del sistema nervioso::enfermedades autoinmunes desmielinizantes del SNC::esclerosis múltiple::esclerosis múltiple crónica progresiva; Otros calificadores::Otros calificadores::/terapia; ATENCIÓN DE SALUD::calidad, acceso y evaluación de la atención sanitaria::prestación sanitaria::costes de la atención a la salud; ATENCIÓN DE SALUD::calidad, acceso y evaluación de la atención sanitaria::calidad de la atención sanitaria::mecanismos de evaluación de la atención sanitaria::recopilación de datos::encuestas y cuestionarios::encuestas de salud::indicadores de salud::coste de las enfermedades
BMC
BMC Health Services Research;25
https://doi.org/10.1186/s12913-025-12592-1
Attribution-NonCommercial-NoDerivatives 4.0 International
http://creativecommons.org/licenses/by-nc-nd/4.0/
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