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.
| Identifer | oai:union.ndltd.org:DRESDEN/oai:qucosa:de:qucosa:72067 |
| Date | 17 May 2022 |
| Creators | Hobart, Jeremy, Bowen, Amy, Pepper, George, Crofts, Harriet, Eberhard, Lucy, Berger, Thomas, Boyko, Alexey, Boz, Cavit, Butzkueven, Helmut, Gulowsen Celius, Elisabeth, Drulovic, Jelena, Flores, José, Horáková, Dana, Lebrun-Frénay, Christine, Marrie, Ruth Ann, Overell, James, Piehl, Fredrik, Vestergaard Rasmussen, Peter, Sá, Maria José, Sîrbu, Carmen-Adella, Skromne, Eli, Torkildsen, Øivind, van Pesch, Vincent, Vollmer, Timothy, Zakaria, Magd, Ziemssen, Tjalf, Giovannoni, Gavin |
| Publisher | Sage |
| Source Sets | Hochschulschriftenserver (HSSS) der SLUB Dresden |
| Language | English |
| Detected Language | English |
| Type | info:eu-repo/semantics/publishedVersion, doc-type:article, info:eu-repo/semantics/article, doc-type:Text |
| Rights | info:eu-repo/semantics/openAccess |
| Relation | 1477-0970, 10.1177/1352458518809326 |
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