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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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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
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author 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
author_facet 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
author_sort Hobart, Jeremy
collection PubMed
description 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.
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spelling pubmed-68268582019-12-04 International consensus on quality standards for brain health-focused care in multiple sclerosis 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 Mult Scler Original Research Papers 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. SAGE Publications 2018-11-01 2019-11 /pmc/articles/PMC6826858/ /pubmed/30381987 http://dx.doi.org/10.1177/1352458518809326 Text en © The Author(s), 2018 http://www.creativecommons.org/licenses/by-nc/4.0/ This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Original Research Papers
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
International consensus on quality standards for brain health-focused care in multiple sclerosis
title International consensus on quality standards for brain health-focused care in multiple sclerosis
title_full International consensus on quality standards for brain health-focused care in multiple sclerosis
title_fullStr International consensus on quality standards for brain health-focused care in multiple sclerosis
title_full_unstemmed International consensus on quality standards for brain health-focused care in multiple sclerosis
title_short International consensus on quality standards for brain health-focused care in multiple sclerosis
title_sort international consensus on quality standards for brain health-focused care in multiple sclerosis
topic Original Research Papers
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6826858/
https://www.ncbi.nlm.nih.gov/pubmed/30381987
http://dx.doi.org/10.1177/1352458518809326
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