The evolution of multiple sclerosis in Spain over the last decade from the patient's perspective

• Published in: Multiple sclerosis and related disorders Vol. 57; p. 103355
• Main Authors: Campos-Lucas, Francisco J., Fernández-Fernández, Óscar, Monge-Martín, Diana, Moral-Torres, Ester, Carrascal-Rueda, Pedro, Caballero-Martínez, Fernando
• Format: Journal Article
• Language: English
• Published: Netherlands Elsevier B.V 01.01.2022
• Subjects: Adult; Biopsychosocial burden; Cross-Sectional Studies; Epidemiologic studies; Female; Humans; Male; Multiple sclerosis; Multiple Sclerosis - epidemiology; Multiple Sclerosis - therapy; Neurology; Patient´s opinion; Quality of Life; Spain - epidemiology; Surveys and Questionnaires; Spain; Neurology; Multiple sclerosis; Epidemiologic studies; Biopsychosocial burden; Patient´s opinion
• ISSN: 2211-0348; 2211-0356
• DOI: 10.1016/j.msard.2021.103355

•Describes the evolution of patients' perception of the degree of satisfaction of their disease-induced needs over the last decade in Spain.•A comparative analysis of the biopsychosocial impact of MS on the daily lives of people affected by this disease.•More than 100 equal variables collected from two analogous studies from 2007 to 2018 have been analysed.•Overall, today's patient reports a better health condition and less disability, but no significant progress is detected in the coverage of social needs.•The results would be largely transferable to other European countries, despite the local nature of the study. Updated information about self-reported experience and satisfaction with care of MS patients (PwMS) in Spain is scarce. We aim to describe, from PwMS’ perspective, the disease impact, the quality of life and the satisfaction level with the social and healthcare support in Spain, and its evolution over the last decade. Multicentre observational study, based on a cross-sectional nationwide survey, completed by 432 PwMS in Spain throughout 2018. The results were compared with those of a similar study carried out in 2007 (370 patients), whose database was retrieved as baseline information. 432 patients recruited from 61 neurology units fully completed the study e-survey (mean age: 43.7 years; 71.4% women). The personal profile of patients was largely similar between the 2007 and 2018 samples. The proportion of patients who identified themselves as having relapsing-remitting MS was higher in 2018 (77.1% vs. 56.7 in 2007; p = 0.0001). Overall, 2018 patients considered themselves more labour-active, less disabled, more independent in movement, and as higher family income earners. The proportion of patients satisfied or very satisfied with healthcare services accessibility increased over time (54.9% in 2007 vs. 66.2 in 2018; p = 0.0009). Similarly, more patients considered their health condition to be good or very good in 2018 (55.8% vs. 33.7% in 2007; p = 0.0001). In contrast, there seems to be little progress in social support terms and opportunities equality. Health condition of PwMS seems to have improved over the last decade, which could be the result of an increasingly effective health care. However, more social protection measures are needed.