Consensus quality indicators for monitoring multiple sclerosis

• Published in: The Lancet regional health. Europe Vol. 40; p. 100891
• Main Authors: Voigt, Isabel, Fischer, Stefanie, Proschmann, Undine, Konofalska, Urszula, Richter, Peggy, Schlieter, Hannes, Berger, Thomas, Meuth, Sven G., Hartung, Hans-Peter, Akgün, Katja, Ziemssen, Tjalf
• Format: Journal Article
• Language: English
• Published: England Elsevier Ltd 01-05-2024; Elsevier
• Subjects: Disease management; Monitoring; Multiple sclerosis; Quality indicators; Quality management; Quality of care; Quality indicators; Multiple sclerosis; Disease management; Monitoring; Quality of care; Quality management
• ISSN: 2666-7762; 2666-7762
• DOI: 10.1016/j.lanepe.2024.100891

Multiple sclerosis (MS) as a chronic, degenerative autoimmune disease of the central nervous system has a longitudinal and heterogeneous course with increasing treatment options and risk profiles requiring constant monitoring of a growing number of parameters. Despite treatment guidelines, there is a lack of strategic and individualised monitoring pathways, including respective quality indicators (QIs). To address this, we systematically developed transparent, traceable, and measurable QIs for MS monitoring. Through literature review, expert discussions, and consensus-building, existing QIs were identified and refined. In a two-stage online Delphi process involving MS specialists (on average 53 years old and with 25 years of professional experience), the QIs were evaluated for content, clarity, and intelligibility, resulting in a set of 24 QIs and checklists to assess the quality of care. The final QIs provide a structured approach to document, monitor, and enhance the quality of care for people with MS across their treatment journey.