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

Multiple Sclerosis Journal - Tập 25 Số 13 - Trang 1809-1818 - 2019
Jeremy Hobart1, Amy Bowen2, George Pepper3, H. S. Crofts4, Lucy Eberhard4, Thomas Berger5, Alexey Boyко6, Cavit Boz7, Helmut Butzkueven8, Elisabeth Gulowsen Celius9, Jelena Drulović10, José Flores11, Dana Horáková12, Christine Lebrun‐Frénay13, Ruth Ann Marrie14, James Overell15, Fredrik Piehl16, Peter Vestergaard Rasmussen17, María José Sá18, Carmen Adella Sîrbu19, Eli Skromne20, Øivind Torkildsen21, Vincent Van Pesch22, Timothy Vollmer23, Magd Zakaria24, Heinz Wiendl25, Gavin Giovannoni26
1Plymouth University Peninsula Schools of Medicine and Dentistry, University of Plymouth, Plymouth, UK
2NHS RightCare, NHS England, London, UK
3Shift.ms, Leeds, UK
4PharmaGenesis London, London, UK
5Clinical Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria
6Department of Neurology, Neurosurgery and Medical Genetics, Pirogov Russian National Research Medical University, Moscow, Russia/Demyelinating Diseases Center, Yusupov Hospital, Moscow, Russia
7Department of Neurology, Karadeniz Technical University, Trabzon, Turkey
8MS and Neuroimmunology Unit, Alfred Health and Eastern Health, Monash University, Melbourne, VIC, Australia
9Department of Neurology, Oslo University Hospital, Oslo, Norway
10Department for Immune-Mediated Disorders of the Central Nervous System, Clinic of Neurology, Faculty of Medicine, University of Belgrade, Belgrade, Serbia
11National Institute of Neurology and Neurosurgery, ABC Medical Center, Mexico City, Mexico
12Department of Neurology and Center of Clinical Neuroscience, First Faculty of Medicine, Charles University and General University Hospital, Prague, Czech Republic
13CRCSEP Neurologie Pasteur 2, Université Côte d’Azur, Nice, France
14Departments of Internal Medicine and Community Health Sciences, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada
15Glasgow MS Clinical Research Centre, Queen Elizabeth University Hospital, Glasgow, UK
16Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden
17Department of Neurology, Aarhus University Hospital, Aarhus, Denmark
18MS Clinic, Department of Neurology, Centro Hospitalar São João, Faculty of Health Sciences, University Fernando Pessoa, Porto, Portugal
19Clinic of Neurology, Central Military Emergency University Hospital, Bucharest, Romania
20Instituto Mexicano de Neurociencias, Hospital Angeles Lomas, Mexico City, Mexico
21Department of Neurology, Haukeland University Hospital, Bergen, Norway
22Cliniques Universitaires Saint-Luc, Université Catholique de Louvain, Brussels, Belgium
23Department of Neurology, University of Colorado, Denver, CO, USA
24Department of Neurology, Ain Shams University, Cairo, Egypt
25Department of Neurology, MS Center Dresden, Center of Clinical Neuroscience, University Hospital Carl Gustav Carus, Dresden University of Technology, Dresden, Germany
26Queen Mary, University of London, Blizard Institute, Barts and The London School of Medicine and Dentistry, London, UK

Tóm tắt

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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