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

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Hobart, Jeremy Bowen, Amy Pepper, George Crofts, Harriet Eberhard, Lucy Van Pesch, Vincent [UCL] Giovannoni, Gavin

(eng) 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.

Document type Article de périodique (Journal article) – Article de recherche
Access type Accès libre
Publication date 2019
Language Anglais
Journal information "Multiple sclerosis" - Vol. 25, no. 13, p. 1809-1818 (2019)
Peer reviewed yes
Publisher SAGE Publications ((United Kingdom) London)
issn 1352-4585
e-issn 1477-0970
Publication status Publié
Affiliations UCL - SSS/IONS/CEMO - Pôle Cellulaire et moléculaire
UCL - (SLuc) Service de neurologie
Keywords Delphi technique ; Multiple sclerosis ; benchmarking ; consensus ; quality improvement ; standards
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Bibliographic reference Hobart, Jeremy ; Bowen, Amy ; Pepper, George ; Crofts, Harriet ; Eberhard, Lucy ; et. al. International consensus on quality standards for brain health-focused care in multiple sclerosis.. In: Multiple sclerosis, Vol. 25, no. 13, p. 1809-1818 (2019)
Permanent URL http://hdl.handle.net/2078.1/204687