dc.contributor
Institut Català de la Salut
dc.contributor
[Oreja-Guevara C] Department of Neurology, Hospital Clinico San Carlos, IdISSC, Madrid, Spain. Department of Medicine, Medicine University, Complutense University of Madrid (UCM), Madrid, Spain. [Meca-Lallana JE] CSUR Multiple Sclerosis and Clinical Neuroimmunology Unit, Neurology Department, Virgen de la Arrixaca Clinical University Hospital, IMIB-Arrixaca, Murcia, Spain. [Díaz-Díaz J] Department of Neurology, Hospital Clinico San Carlos, IdISSC, 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, Centre d’Esclerosi Múltiple de Catalunya (CEMCAT), Barcelona, Spain. Vall d’Hebron Hospital Universitari, Barcelona, Spain
dc.contributor
Vall d'Hebron Barcelona Hospital Campus
dc.contributor.author
Oreja-Guevara, Celia
dc.contributor.author
MECA-LALLANA, JOSE EUSTASIO
dc.contributor.author
Diaz, Judit
dc.contributor.author
Ara Callizo, José Ramón
dc.contributor.author
Hernández Perez, Miguel Angel
dc.contributor.author
Gracia Gil, Julia
dc.contributor.author
Rio, Jordi
dc.date.accessioned
2025-10-24T10:21:58Z
dc.date.available
2025-10-24T10:21:58Z
dc.date.issued
2024-10-18T10:27:15Z
dc.date.issued
2024-10-18T10:27:15Z
dc.date.issued
2024-07-31
dc.identifier
Oreja-Guevara C, Meca-Lallana JE, Díaz-Díaz J, Ara JR, Hernández Pérez MÁ, Gracia Gil J, et al. Clinical characteristics and impact on patient-reported outcomes and quality of life of people with ambulatory secondary progressive multiple sclerosis: DISCOVER study. Mult Scler Relat Disord. 2024 Jul 31;90:105787.
dc.identifier
https://hdl.handle.net/11351/12078
dc.identifier
10.1016/j.msard.2024.105787
dc.identifier
001301040000001
dc.identifier.uri
http://hdl.handle.net/11351/12078
dc.description.abstract
Cognitive impairment; Indirect costs; Secondary progressive multiple sclerosis
dc.description.abstract
Deteriorament cognitiu; Costos indirectes; Esclerosi múltiple progressiva secundària
dc.description.abstract
Deterioro cognitivo; Costos indirectos; Esclerosis múltiple progresiva secundaria
dc.description.abstract
Background
People with secondary progressive multiple sclerosis (pwSPMS) experience increasing disability, which impacts negatively on their health-related quality of life (HRQoL). Our aims were to assess the impact of secondary progressive multiple sclerosis (SPMS) on functional status and HRQoL and describe the clinical profile in this population.
Methods
DISCOVER is an observational, cross-sectional, multicenter study with retrospective data collection in real-world clinical practice in Spain. Sociodemographic and clinical variables, functional and cognitive scales, patient-reported outcomes (PROs), and direct healthcare, and non-healthcare and indirect costs were collected.
Results
A total of 297 evaluable pwSPMS with a EDSS score between 3-6.5 participated: 62.3 % were female and 18.9 % had active SPMS. At the study visit, 77 % of them presented an Expanded Disability Scale Score (EDSS) of 6–6.5. Nearly 40 % did not receive any disease-modifying treatment. Regarding the working situation, 61.6 % were inactive due to disability. PROs: 99.3 % showed mobility impairment in EuroQoL-5 Dimensions-5 Levels, and about 60 % reported physical impact on the Multiple Sclerosis Impact Scale-29. Fatigue was present in 76.1 %, and almost 40 % reported anxiety or depression. The Symbol Digit Modalities Test was used to assess cognitive impairment; 80 % of the patients were below the mean score.
Participants who presented relapses two years before and had high EDSS scores had a more negative impact on HRQoL. PwSPMS with a negative impact on HRQoL presented a higher cost burden, primarily due to indirect costs.
Conclusions
PwSPMS experience a negative impact on their HRQoL, with a high physical impact, fatigue, cognitive impairment, and a high burden of indirect costs.
dc.description.abstract
This study was funded by Novartis Farmacéutica, S.A.
dc.format
application/pdf
dc.relation
Multiple Sclerosis and Related Disorders;90
dc.relation
https://doi.org/10.1016/j.msard.2024.105787
dc.rights
Attribution-NonCommercial-NoDerivatives 4.0 International
dc.rights
http://creativecommons.org/licenses/by-nc-nd/4.0/
dc.rights
info:eu-repo/semantics/openAccess
dc.subject
Esclerosi múltiple
dc.subject
Pacients - Satisfacció
dc.subject
DISEASES::Nervous System Diseases::Autoimmune Diseases of the Nervous System::Demyelinating Autoimmune Diseases, CNS::Multiple Sclerosis::Multiple Sclerosis, Chronic Progressive
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ANALYTICAL, DIAGNOSTIC AND THERAPEUTIC TECHNIQUES, AND EQUIPMENT::Investigative Techniques::Epidemiologic Methods::Data Collection::Surveys and Questionnaires::Health Care Surveys::Patient Reported Outcome Measures
dc.subject
HEALTH CARE::Environment and Public Health::Public Health::Epidemiologic Measurements::Demography::Health Status::Quality of Life
dc.subject
ENFERMEDADES::enfermedades del sistema nervioso::enfermedades autoinmunitarias del sistema nervioso::enfermedades autoinmunes desmielinizantes del SNC::esclerosis múltiple::esclerosis múltiple crónica progresiva
dc.subject
TÉCNICAS Y EQUIPOS ANALÍTICOS, DIAGNÓSTICOS Y TERAPÉUTICOS::técnicas de investigación::métodos epidemiológicos::recopilación de datos::encuestas y cuestionarios::encuestas sobre atención a la salud::medidas de resultados percibidos por los pacientes
dc.subject
ATENCIÓN DE SALUD::ambiente y salud pública::salud pública::medidas epidemiológicas::demografía::estado de salud::calidad de vida
dc.title
Clinical characteristics and impact on patient-reported outcomes and quality of life of people with ambulatory secondary progressive multiple sclerosis: DISCOVER study
dc.type
info:eu-repo/semantics/article
dc.type
info:eu-repo/semantics/publishedVersion
