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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...
Autores principales: | , , , , , , , , , , , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
SAGE Publications
2018
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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. |
format | Online Article Text |
id | pubmed-6826858 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2018 |
publisher | SAGE Publications |
record_format | MEDLINE/PubMed |
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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