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.

Clinic of Neurology Central Military Emergency University Hospital Bucharest Romania

Clinical Department of Neurology Medical University of Innsbruck Innsbruck Austria

Cliniques Universitaires Saint Luc Université Catholique de Louvain Brussels Belgium

CRCSEP Neurologie Pasteur 2 Université Côte d'Azur Nice France

Department for Immune Mediated Disorders of the Central Nervous System Clinic of Neurology Faculty of Medicine University of Belgrade Belgrade Serbia

Department of Clinical Neuroscience Karolinska Institutet Stockholm Sweden

Department of Neurology Aarhus University Hospital Aarhus Denmark

Department of Neurology Ain Shams University Cairo Egypt

Department of Neurology and Center of Clinical Neuroscience 1st Faculty of Medicine Charles University and General University Hospital Prague Czech Republic

Department of Neurology Haukeland University Hospital Bergen Norway

Department of Neurology Karadeniz Technical University Trabzon Turkey

Department of Neurology MS Center Dresden Center of Clinical Neuroscience University Hospital Carl Gustav Carus Dresden University of Technology Dresden Germany

Department of Neurology Neurosurgery and Medical Genetics Pirogov Russian National Research Medical University Moscow Russia Demyelinating Diseases Center Yusupov Hospital Moscow Russia

Department of Neurology Oslo University Hospital Oslo Norway

Department of Neurology University of Colorado Denver CO USA

Departments of Internal Medicine and Community Health Sciences Max Rady College of Medicine Rady Faculty of Health Sciences University of Manitoba Winnipeg MB Canada

Glasgow MS Clinical Research Centre Queen Elizabeth University Hospital Glasgow UK

Instituto Mexicano de Neurociencias Hospital Angeles Lomas Mexico City Mexico

MS and Neuroimmunology Unit Alfred Health and Eastern Health Monash University Melbourne VIC Australia

MS Clinic Department of Neurology Centro Hospitalar São João Faculty of Health Sciences University Fernando Pessoa Porto Portugal

National Institute of Neurology and Neurosurgery ABC Medical Center Mexico City Mexico

NHS RightCare NHS England London UK

PharmaGenesis London London UK

Plymouth University Peninsula Schools of Medicine and Dentistry University of Plymouth Plymouth UK

Queen Mary University of London Blizard Institute Barts and The London School of Medicine and Dentistry London UK

Shift ms Leeds UK

Mult Scler. 2020 Oct;26(12):1613-1614. doi: 10.1177/1352458520918376. PubMed

Mult Scler. 2020 Oct;26(12):1611-1613. doi: 10.1177/1352458520907906. PubMed

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Tremlett H, Zhao Y, Joseph J, et al. Relapses in multiple sclerosis are age- and time-dependent. J Neurol Neurosurg Psychiatry 2008; 79: 1368–1374. PubMed

Sumowski JF, Rocca MA, Leavitt VM, et al. Brain reserve and cognitive reserve in multiple sclerosis: What you’ve got and how you use it. Neurology 2013; 80: 2186–2193. PubMed PMC

Giovannoni G, Butzkueven H, Dhib-Jalbut S, et al. Brain health: Time matters in multiple sclerosis. Mult Scler Relat Disord 2016; 9(Suppl. 1): S5–S48. PubMed

Kappos L, O’Connor P, Radue EW, et al. Long-term effects of fingolimod in multiple sclerosis: The randomized FREEDOMS extension trial. Neurology 2015; 84: 1582–1591. PubMed PMC

Kappos L, Traboulsee A, Constantinescu C, et al. Long-term subcutaneous interferon beta-1a therapy in patients with relapsing-remitting MS. Neurology 2006; 67: 944–953. PubMed

Johnson KP, Ford CC, Lisak RP, et al. Neurologic consequence of delaying glatiramer acetate therapy for multiple sclerosis: 8-year data. Acta Neurol Scand 2005; 111: 42–47. PubMed

Rovaris M, Comi G, Rocca MA, et al. Long-term follow-up of patients treated with glatiramer acetate: A multicentre, multinational extension of the European/Canadian double-blind, placebo-controlled, MRI-monitored trial. Mult Scler 2007; 13: 502–508. PubMed

Trojano M, Pellegrini F, Paolicelli D, et al. Real-life impact of early interferon beta therapy in relapsing multiple sclerosis. Ann Neurol 2009; 66: 513–520. PubMed

O’Connor P, Goodman A, Kappos L, et al. Long-term safety and effectiveness of natalizumab redosing and treatment in the STRATA MS Study. Neurology 2014; 83: 78–86. PubMed PMC

Goodin DS, Reder AT, Ebers GC, et al. Survival in MS: A randomized cohort study 21 years after the start of the pivotal IFNβ-1b trial. Neurology 2012; 78: 1315–1322. PubMed PMC

Merkel B, Butzkueven H, Traboulsee AL, et al. Timing of high-efficacy therapy in relapsing-remitting multiple sclerosis: A systematic review. Autoimmun Rev 2017; 16: 658–665. PubMed

D’Hooghe MB, Nagels G, Bissay V, et al. Modifiable factors influencing relapses and disability in multiple sclerosis. Mult Scler 2010; 16: 773–785. PubMed

Pittas F, Ponsonby AL, van der Mei IA, et al. Smoking is associated with progressive disease course and increased progression in clinical disability in a prospective cohort of people with multiple sclerosis. J Neurol 2009; 256: 577–585. PubMed

Ozcan ME, Ince B, Bingol A, et al. Association between smoking and cognitive impairment in multiple sclerosis. Neuropsychiatr Dis Treat 2014; 10: 1715–1719. PubMed PMC

Paz-Ballesteros WC, Monterrubio-Flores EA, de Jesus Flores-Rivera J, et al. Cigarette smoking, alcohol consumption and overweight in multiple sclerosis: Disability progression. Arch Med Res 2017; 48: 113–120. PubMed

Kappus N, Weinstock-Guttman B, Hagemeier J, et al. Cardiovascular risk factors are associated with increased lesion burden and brain atrophy in multiple sclerosis. J Neurol Neurosurg Psychiatry 2016; 87: 181–187. PubMed

Marrie RA. Comorbidity in multiple sclerosis: Implications for patient care. Nat Rev Neurol 2017; 13: 375–382. PubMed

Khuri SF, Daley J, Henderson WG. The comparative assessment and improvement of quality of surgical care in the Department of Veterans Affairs. Arch Surg 2002; 137: 20–27. PubMed

Schwamm LH, Fonarow GC, Reeves MJ, et al. Get With the Guidelines-Stroke is associated with sustained improvement in care for patients hospitalized with acute stroke or transient ischemic attack. Circulation 2009; 119: 107–115. PubMed

Hsu C-C, Sandford BA. The Delphi technique: Making sense of consensus. Pract Assess Res Eval 2007; 12: 1–8.

Multiple Sclerosis International Federation. Atlas of MS 2013: Mapping multiple sclerosis around the world, https://www.msif.org/wp-content/uploads/2014/09/Atlas-of-MS.pdf (2013, accessed 14 December 2017).

National Institute for Health and Care Excellence (NICE). Multiple sclerosis in adults: Management. NICE Clinical Guideline, CG. 186, London, UK: NICE, October 2014.

Reen GK, Silber E, Langdon DW. Multiple sclerosis patients’ understanding and preferences for risks and benefits of disease-modifying drugs: A systematic review. J Neurol Sci 2017; 375: 107–122. PubMed

Montalban X, Gold R, Thompson AJ, et al. ECTRIMS/EAN guideline on the pharmacological treatment of people with multiple sclerosis. Mult Scler 2018; 24: 96–120. PubMed

U.S. Food & Drug Administration. FDA Drug Safety Communication: FDA warns that gadolinium-based contrast agents (GBCAs) are retained in the body; requires new class warnings, https://www.fda.gov/Drugs/DrugSafety/ucm589213.htm (2017, accessed 8 January 2018).

Ruet A, Deloire MS, Charre-Morin J, et al. A new computerised cognitive test for the detection of information processing speed impairment in multiple sclerosis. Mult Scler 2013; 19: 1665–1672. PubMed

Benedict RH, DeLuca J, Phillips G, et al. Validity of the symbol digit modalities test as a cognition performance outcome measure for multiple sclerosis. Mult Scler 2017; 23: 721–733. PubMed PMC

Langdon DW, Amato MP, Boringa J, et al. Recommendations for a brief international cognitive assessment for multiple sclerosis (BICAMS). Mult Scler 2012; 18: 891–898. PubMed PMC

American Association of Neuroscience Nurses, Association of Rehabilitation Nurses and International Organization of Multiple Sclerosis Nurses. Nursing management of the patient with multiple sclerosis: AANN, ARN, and IOMSN clinical practice guideline series. AANN, Chicago, IL, USA, 2011.

Yamout B, Alroughani R, Al-Jumah M, et al. Consensus recommendations for the diagnosis and treatment of multiple sclerosis: The Middle East North Africa Committee for Treatment and Research In Multiple Sclerosis (MENACTRIMS). Curr Med Res Opin 2015; 31: 1349–1361. PubMed

Rae-Grant A, Day GS, Marrie RA, et al. Practice guideline recommendations summary: Disease-modifying therapies for adults with multiple sclerosis: Report of the guideline development, dissemination, and implementation subcommittee of the American Academy of Neurology. Neurology 2018; 90: 777–788. PubMed

Thompson AJ, Banwell BL, Barkhof F, et al. Diagnosis of multiple sclerosis: 2017 revisions of the McDonald criteria. Lancet Neurol 2018; 17: 162–173. PubMed

Traboulsee A, Simon JH, Stone L, et al. Revised recommendations of the Consortium of MS Centers Task Force for a standardized MRI protocol and clinical guidelines for the diagnosis and follow-up of multiple sclerosis. AJNR Am J Neuroradiol 2016; 37: 394–401. PubMed PMC

National Institute for Health and Care Excellence (NICE). Multiple sclerosis. NICE Quality Standard, QS. 108, London, UK: NICE, January 2016.

Diagnostic delay of multiple sclerosis: prevalence, determinants and consequences