Clinical characteristics and impact on patient-reported outcomes and quality of life of people with ambulatory secondary progressive multiple sclerosis: DISCOVER study.

Autor: 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. Electronic address: coreja@ucm.es., 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., Alonso Torres AM; CSUR Multiple Sclerosis, Neurology Department, Málaga Regional University Hospital, Málaga, Spain., Pilo de la Fuente B; Neurology Department, Getafe University Hospital, Madrid, Spain., Ramió-Torrentà L; Neuroimmunology and Multiple Sclerosis Unit, Neurology Department, Dr. Josep Trueta University Hospital, IDIBGI, Girona, Spain., Eichau Madueño S; Neurology Department, Virgen Macarena University Hospital, Sevilla, Spain., Gascón-Giménez F; Neurology Department, Hospital Clínico de Valencia, Valencia, Spain., Casanova B; Neuroinmunology Unit, University and Polytechnic La Fe Hospital, València, Spain., Martínez-Yélamos S; Neurology Department, Bellvitge-IDIBELL University Hospital, L'Hospitalet De Llobregat, Barcelona, Spain., Aguado Valcárcel M; Neurology Department, Hospital Álvaro Cunqueiro, Vigo, Spain., Martínez Ginés ML; Neurology Department, Hospital Gregorio Marañón, Madrid, Spain., El Berdei Montero Y; Neurology Department, Salamanca University Hospital, Salamanca, Spain., López Real AM; Neurology Department, A Coruña University Hospital Complex, A Coruña, Spain., González-Quintanilla V; Neurology Department, Marqués de Valdecilla University Hospital, Cantabria, Spain., De Torres L; Neurology Department, Torrejón University Hospital, Madrid, Spain., Martínez-Rodríguez JE; Neurology Department, Hospital del Mar, Barcelona, Spain., Costa-Frossard L; Neurology Department, Ramón y Cajal University Hospital, Madrid, Spain., Garcés Redondo M; Neurology Department, Lozano Blesa Clinical University Hospital, Zaragoza, Spain., Labiano Fontcuberta A; Neurology Department, 12 de Octubre University Hospital, Madrid, Spain., Castellanos-Pinedo F; Neurology Department, Hospital Virgen del Puerto Plasencia, Cáceres, Spain., García Merino JA; Neurology Department, Puerta de Hierro University Hospital, Madrid, Spain., Muñoz Fernández C; Neurology Department, Torrecárdenas University Hospital, Almería, Spain., Castillo-Triviño T; Neurology Department, Donostia University Hospital, San Sebastián, Spain., Meca-Lallana V; Neurology Department, La Princesa University Hospital, Madrid, Spain., Peña Martínez J; Neurology Department, San Agustín University Hospital, Avilés, Asturias, Spain., Rodríguez-Antigüedad A; Neurology Department, Cruces-BioCruces Bizkaia University Hospital, Barakaldo-Bizkaia, Spain., Prieto González JM; Neurology Department, Santiago Clinical University Hospital, Instituto de Investigaciones Sanitarias de Santiago, Santiago de Compostela, Spain., Agüera Morales E; Neurology Department, Reina Sofia University Hospital, Córdoba, Spain., Pérez Molina I; Neurology Department, Hospital Virgen de la Salud, Toledo, Spain., Solar Sánchez DM; Neurology Department, Cabueñes University Hospital, Gijón, Spain., Herrera Varo N; Neurology Department, Burgos University Hospital, Burgos, Spain., Romero Sevilla R; Novartis Farmacéutica, S.A., Barcelona, Spain., Gómez Vicente L; Novartis Farmacéutica, S.A., Barcelona, Spain., Río J; Neurology Department, CEMCAT, Vall d'Hebrón University Hospital, Barcelona, Spain.
Jazyk: angličtina
Zdroj: Multiple sclerosis and related disorders [Mult Scler Relat Disord] 2024 Oct; Vol. 90, pp. 105787. Date of Electronic Publication: 2024 Aug 02.
DOI: 10.1016/j.msard.2024.105787
Abstrakt: 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.
Competing Interests: Declaration of competing interest None
(Copyright © 2024. Published by Elsevier B.V.)
Databáze: MEDLINE
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