163 Development of clinical and patient-reported quality metrics for multiple sclerosis: a UK pilot study report

G Giovannoni, S White, N Mistry, S Calhoun, C Young, M Coutts, M Roberts, P Anderson, R Bernstein, J Hobart

Research output: Contribution to conferenceConference paper (not formally published)peer-review

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Abstract

<jats:sec><jats:title>Background</jats:title><jats:p>Quality standards (QS) for people with multiple sclerosis (PwMS) are suboptimal, ambiguous and restricted to certain patient subgroups and care pathways.</jats:p></jats:sec><jats:sec><jats:title>Aim</jats:title><jats:p>Develop and pilot MS metrics measuring service provision quality to identify areas for improvement.</jats:p></jats:sec><jats:sec><jats:title>Methods</jats:title><jats:p>A multidisciplinary Working Group developed clinician and patient-reported metrics and standardised data collection forms through an iterative process.</jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p>Metrics covered: referral; diagnosis; treatment; annual review; general management; education. Pilot (n=76) showed: 31% of PwMS were referred to MS specialist within 4 weeks of suspected/confirmed demyelination; 28% and 56% had uncomplicated MS confirmed and were offered specialist MS nurse appointment, respectively, within 4 weeks of specialist referral; 75% of eligible PwMS were offered disease-modifying therapy within 8 weeks of confirmed MS diagnosis; 85% had comprehensive multidisciplinary team (MDT) annual review; 90% had a defined point of contact within the MS service; 86% of unscheduled contacts by PwMS, MDT or general practitioners were responded to within 3 days; 53% of MS services maintained a single database of PwMS; and 76% of PwMS were offered ongoing education. Data collection continues and updated findings will be reported.</jats:p></jats:sec><jats:sec><jats:title>Discussion</jats:title><jats:p>MS metrics/data forms are feasible for routine clinical settings, simple to interpret and provide a valuable benchmark for guiding MS service improvements.</jats:p></jats:sec>
Original languageEnglish
DOIs
Publication statusPublished - Dec 2019

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