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

Mult Scler. 2019 Nov;25(13):1809-1818. doi: 10.1177/1352458518809326. Epub 2018 Nov 1.

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.

Keywords: Delphi technique; Multiple sclerosis; benchmarking; consensus; quality improvement; standards.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Brain* / pathology
  • Consensus
  • Delphi Technique
  • Humans
  • Multiple Sclerosis* / diagnosis
  • Multiple Sclerosis* / pathology
  • Multiple Sclerosis* / therapy
  • Neurology / standards*