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

  • Jeremy Hobart*
  • , Amy Bowen
  • , George Pepper
  • , Harriet Crofts
  • , Lucy Eberhard
  • , Thomas Berger
  • , Alexey Boyko
  • , Cavit Boz
  • , Helmut Butzkueven
  • , Elisabeth Gulowsen Celius
  • , Jelena Drulovic
  • , José Flores
  • , Dana Horáková
  • , Christine Lebrun-Frénay
  • , Ruth Ann Marrie
  • , James Overell
  • , Fredrik Piehl
  • , Peter Vestergaard Rasmussen
  • , Maria José Sá
  • , Carmen Adella Sîrbu
  • Eli Skromne, Øivind Torkildsen, Pesch V van, Timothy Vollmer, Magd Zakaria, Tjalf Ziemssen, Gavin Giovannoni
*Corresponding author for this work
  • Department of Neurology
  • Shift.ms
  • PharmaGenesis London
  • Innsbruck Medical University
  • Pirogov Russian National Research Medical University
  • Yusupov Hospital
  • Karadeniz Technical University
  • Monash University
  • University of Oslo
  • University of Belgrade
  • Instituto Nacional de Neurologia y Neurocirugia
  • Charles University
  • CHU de Nice
  • University of Manitoba
  • Queen Elizabeth University Hospital, Glasgow
  • Karolinska Institutet
  • Aarhus University
  • University Fernando Pessoa
  • Carol Davila University of Medicine and Pharmacy
  • Hospital Angeles Lomas
  • University of Bergen
  • University of Colorado Denver
  • Ain Shams University
  • Technische Universität Dresden
  • Queen Mary University of London

Research output: Contribution to journalArticlepeer-review

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Abstract

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.
Original languageEnglish
Pages (from-to)1352458518809326-1352458518809326
Number of pages0
JournalMULTIPLE SCLEROSIS
Volume0
Issue number0
Early online date1 Nov 2018
DOIs
Publication statusPublished - 1 Nov 2018

Keywords

  • Delphi technique
  • Multiple sclerosis
  • benchmarking
  • consensus
  • quality improvement
  • standards

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