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 SîrbuEli Skromne, Øivind Torkildsen, Pesch V van, Timothy Vollmer, Magd Zakaria, Tjalf Ziemssen, Gavin Giovannoni

*Corresponding author for this work

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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