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International consensus on quality standards for brain health-focused care in multiple sclerosis

BACKGROUND: Time matters in multiple sclerosis (MS). Irreversible neural damage and cell loss occur from disease onset. The MS community has endorsed a management strategy of prompt diagnosis, timely intervention and regular proactive monitoring of treatment effectiveness and disease activity to imp...

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Detalles Bibliográficos
Autores principales: Hobart, Jeremy, Bowen, Amy, Pepper, George, Crofts, Harriet, Eberhard, Lucy, Berger, Thomas, Boyko, Alexey, Boz, Cavit, Butzkueven, Helmut, Celius, Elisabeth Gulowsen, Drulovic, Jelena, Flores, José, Horáková, Dana, Lebrun-Frénay, Christine, Marrie, Ruth Ann, Overell, James, Piehl, Fredrik, Rasmussen, Peter Vestergaard, Sá, Maria José, Sîrbu, Carmen-Adella, Skromne, Eli, Torkildsen, Øivind, van Pesch, Vincent, Vollmer, Timothy, Zakaria, Magd, Ziemssen, Tjalf, Giovannoni, Gavin
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6826858/
https://www.ncbi.nlm.nih.gov/pubmed/30381987
http://dx.doi.org/10.1177/1352458518809326
Descripción
Sumario:BACKGROUND: Time matters in multiple sclerosis (MS). Irreversible neural damage and cell loss occur from disease onset. The MS community has endorsed a management strategy of prompt diagnosis, timely intervention and regular proactive monitoring of treatment effectiveness and disease activity to improve outcomes in people with MS. OBJECTIVES: We sought to develop internationally applicable quality standards for timely, brain health–focused MS care. METHODS: A panel of MS specialist neurologists participated in an iterative, online, modified Delphi process to define ‘core’, ‘achievable’ and ‘aspirational’ time frames reflecting minimum, good and high care standards, respectively. A multidisciplinary Reviewing Group (MS nurses, people with MS, allied healthcare professionals) provided insights ensuring recommendations reflected perspectives from multiple stakeholders. RESULTS: Twenty-one MS neurologists from 19 countries reached consensus on most core (25/27), achievable (25/27) and aspirational (22/27) time frames at the end of five rounds. Agreed standards cover six aspects of the care pathway: symptom onset, referral and diagnosis, treatment decisions, lifestyle, disease monitoring and managing new symptoms. CONCLUSION: These quality standards for core, achievable and aspirational care provide MS teams with a three-level framework for service evaluation, benchmarking and improvement. They have the potential to produce a profound change in the care of people with MS.