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, Vincent van Pesch, Timothy Vollmer, Magd Zakaria, Tjalf Ziemssen, Gavin Giovannoni

Research output: Contribution to journalArticleOtherpeer-review

67 Citations (Scopus)

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)1809-1818
Number of pages10
JournalMultiple Sclerosis Journal
Volume25
Issue number13
DOIs
Publication statusPublished - 1 Nov 2019

Keywords

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

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