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

Hobart J., Bowen A., Pepper G., Crofts H., Eberhard L., Berger T., ...More

MULTIPLE SCLEROSIS JOURNAL, vol.25, no.13, pp.1809-1818, 2019 (SCI-Expanded) identifier identifier identifier

  • Publication Type: Article / Article
  • Volume: 25 Issue: 13
  • Publication Date: 2019
  • Doi Number: 10.1177/1352458518809326
  • Journal Indexes: Science Citation Index Expanded (SCI-EXPANDED), Scopus
  • Page Numbers: pp.1809-1818
  • Keywords: Multiple sclerosis, quality improvement, consensus, standards, Delphi technique, benchmarking, GLATIRAMER ACETATE, FOLLOW-UP, RECOMMENDATIONS, DIAGNOSIS, THERAPY, IMPROVEMENT, DISABILITY, GUIDELINES, EXTENSION, RELAPSES
  • Karadeniz Technical University Affiliated: Yes


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.