Sistema de Salut de Catalunya
Institut Català de la Salut
[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
Vall d'Hebron Barcelona Hospital Campus
2024-10-18T10:27:15Z
2024-10-18T10:27:15Z
2024-07-31
Cognitive impairment; Indirect costs; Secondary progressive multiple sclerosis
Deteriorament cognitiu; Costos indirectes; Esclerosi múltiple progressiva secundària
Deterioro cognitivo; Costos indirectos; Esclerosis múltiple progresiva secundaria
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.
This study was funded by Novartis Farmacéutica, S.A.
Artículo
Versión publicada
Inglés
Esclerosi múltiple; Pacients - Satisfacció; DISEASES::Nervous System Diseases::Autoimmune Diseases of the Nervous System::Demyelinating Autoimmune Diseases, CNS::Multiple Sclerosis::Multiple Sclerosis, Chronic Progressive; ANALYTICAL, DIAGNOSTIC AND THERAPEUTIC TECHNIQUES, AND EQUIPMENT::Investigative Techniques::Epidemiologic Methods::Data Collection::Surveys and Questionnaires::Health Care Surveys::Patient Reported Outcome Measures; HEALTH CARE::Environment and Public Health::Public Health::Epidemiologic Measurements::Demography::Health Status::Quality of Life; ENFERMEDADES::enfermedades del sistema nervioso::enfermedades autoinmunitarias del sistema nervioso::enfermedades autoinmunes desmielinizantes del SNC::esclerosis múltiple::esclerosis múltiple crónica progresiva; 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; ATENCIÓN DE SALUD::ambiente y salud pública::salud pública::medidas epidemiológicas::demografía::estado de salud::calidad de vida
Elsevier
Multiple Sclerosis and Related Disorders;90
https://doi.org/10.1016/j.msard.2024.105787
Attribution-NonCommercial-NoDerivatives 4.0 International
http://creativecommons.org/licenses/by-nc-nd/4.0/
Articles científics - CEMCAT [136]
Articles científics - HVH [3396]
