2026-04-17T22:49:18Zhttps://recercat.cat/oai/request

oai:recercat.cat:11351/111382025-10-24T10:34:28Zcom_2072_378070com_2072_378040col_2072_378092

Defining a standard set of health outcomes for patients with relapsing-remitting multiple sclerosis Llaneza González, Miguel Ángel CARRASCAL, PEDRO DELGADO-SANCHEZ, OLGA RODRIGUEZ-ANTIGUEDAD, ALFREDO Morell Baladrón, Alberto Borges Guerra, Mónica Rovira, Alex Esclerosi múltiple Atenció centrada en el pacient Avaluació de resultats (Assistència sanitària) Pacients - Satisfacció DISEASES::Nervous System Diseases::Autoimmune Diseases of the Nervous System::Demyelinating Autoimmune Diseases, CNS::Multiple Sclerosis::Multiple Sclerosis, Relapsing-Remitting HEALTH CARE::Health Services Administration::Patient Care Management::Comprehensive Health Care::Primary Health Care::Patient-Centered Care HEALTH CARE::Environment and Public Health::Public Health::Epidemiologic Measurements::Demography::Health Status::Quality of Life ANALYTICAL, DIAGNOSTIC AND THERAPEUTIC TECHNIQUES, AND EQUIPMENT::Investigative Techniques::Epidemiologic Methods::Data Collection::Surveys and Questionnaires::Health Care Surveys::Patient Reported Outcome Measures ENFERMEDADES::enfermedades del sistema nervioso::enfermedades autoinmunitarias del sistema nervioso::enfermedades autoinmunes desmielinizantes del SNC::esclerosis múltiple::esclerosis múltiple recurrente-remitente ATENCIÓN DE SALUD::administración de los servicios de salud::gestión de la atención al paciente::atención integral de salud::atención primaria de la salud::atención centrada en el paciente ATENCIÓN DE SALUD::ambiente y salud pública::salud pública::medidas epidemiológicas::demografía::estado de salud::calidad de vida 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 Outcome measurement; Patient-centred care; Relapsing-remitting multiple sclerosis Medición de resultados; Atención centrada en el paciente; Esclerosis múltiple remitente-recurrente Mesura de resultats; Atenció centrada en el pacient; Esclerosi múltiple recurrent-remissió Background Standardizing health outcomes is challenging in clinical management, but it also holds the potential for creating a healthcare system that is both more effective and efficient. The aim of the present study is to define a standardized set of health outcomes for managing Relapsing-Remitting Multiple Sclerosis (RRMS). Methods The project was led and coordinated by a multidisciplinary scientific committee (SC), which included a literature review, a patient-focused group, three nominal group meetings, and two SC meetings. Results 36 outcome variables were included in the standard set: 24 clinical (including weight, smoking habit, comorbidities, disability, mobility, diagnosis of secondary progressive multiple sclerosis, relapsed-related variables, radiological variables, cognitive status and disease-related symptoms), nine treatment-related (pharmacological and non-pharmacological information), and 3 related to the impact of RRMS on the patient's life (quality of life, pregnancy desire, work-related difficulties). In addition, experts also agreed to collect 10 case-mix variables that may affect but cannot be controlled as part of the management of the condition: 4 sociodemographic (age, sex, race, and employment status) and 6 clinical (height, date of diagnosis and first episode, serological status, early symptoms, and number of relapses pre-diagnosis). Conclusion The information provided through the present standard set of outcome variables can improve the management of RRMS and promote patient-centred quality care. This project was supported by Bristol Myers Squibb. 2025-10-24T10:34:28Z 2025-10-24T10:34:28Z 2025-10-24T10:34:28Z 2024-02-28T12:47:33Z 2024-02-28T12:47:33Z 2024-04 info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion http://hdl.handle.net/11351/11138 Multiple Sclerosis and Related Disorders;84 https://doi.org/10.1016/j.msard.2024.105501 Attribution 4.0 International http://creativecommons.org/licenses/by/4.0/ info:eu-repo/semantics/openAccess Elsevier Scientia