دورية أكاديمية
Defining a standard set of health outcomes for patients with relapsing-remitting multiple sclerosis
| العنوان: | Defining a standard set of health outcomes for patients with relapsing-remitting multiple sclerosis |
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| المؤلفون: | Llaneza González, Miguel Ángel, CARRASCAL, PEDRO, DELGADO-SANCHEZ, OLGA, RODRIGUEZ-ANTIGUEDAD, ALFREDO, Morell Baladrón, Alberto, Borges Guerra, Mónica, Rovira, Alex |
| المساهمون: | Institut Català de la Salut, Llaneza González M Neurology Department, Hospital Universitario Central de Asturias, Oviedo, Spain. Carrascal Rueda P Esclerosis Múltiple España (EME), Madrid, Spain. Delgado Sánchez O Pharmacy Department, Hospital Universitario Sos Espases, Palma, Illes Balears, Spain. Borges Guerra M Multiple Sclerosis Center, Hospital Universitario Virgen de la Macarena, Sevilla, Spain. Rodríguez Antigüedad A Neurology Department, Hospital Universitario Cruces, Barakaldo, Bizkaia, Spain. Morell Baladrón A Pharmacy Department, Hospital Universitario La Princesa, Madrid, Spain. À Rovira Secció de Neuroradiologia, Radiodiagnòstic (IDI), Vall d’Hebron Hospital Universitari, Barcelona, Spain, Vall d'Hebron Barcelona Hospital Campus |
| المصدر: | Scientia |
| بيانات النشر: | Elsevier |
| سنة النشر: | 2024 |
| مصطلحات موضوعية: | 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 |
| الوصف: | 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. |
| نوع الوثيقة: | article in journal/newspaper |
| وصف الملف: | application/pdf |
| اللغة: | English |
| تدمد: | 2211-0348 |
| العلاقة: | Multiple Sclerosis and Related Disorders;84; https://doi.org/10.1016/j.msard.2024.105501Test; Llaneza González M, Carrascal Rueda P, Delgado Sánchez O, Borges Guerra M, Rodríguez Antigüedad A, Morell Baladrón A, et al. Defining a standard set of health outcomes for patients with relapsing-remitting multiple sclerosis. Mult Scler Relat Disord. 2024 Apr;84:105501.; https://hdl.handle.net/11351/11138Test |
| DOI: | 10.1016/j.msard.2024.105501 |
| الإتاحة: | https://doi.org/10.1016/j.msard.2024.105501Test https://hdl.handle.net/11351/11138Test |
| حقوق: | Attribution 4.0 International ; http://creativecommons.org/licenses/by/4.0Test/ ; info:eu-repo/semantics/openAccess |
| رقم الانضمام: | edsbas.115801FA |
| قاعدة البيانات: | BASE |
| تدمد: | 22110348 |
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| DOI: | 10.1016/j.msard.2024.105501 |