Efthymiadou, Olina

Grimaccia, Federico

Kanavos, Panos

Mossman, Jean

Tinelli, Michela

Visintin, Erica

LSE Research Online

Towards better outcomes in multiple sclerosis by addressing policy change:The International MultiPlE Sclerosis Study (IMPrESS)http://www.lse.ac.uk/LSEHealthAndSocialCare/research/LSEHealth/MTRG/IMPRESS-Report-March-2016.pdfEMSP, Oslo 2016Panos Kanavos, Michela Tinelli, Olina Efthymiadou, Erica Visintin, Federico Grimaccia, Jean MossmanPurpose of study• Provide the evidence for, and discuss, the merits of potential changes in how MS is managed:• Use of better (and more accurate) diagnostic follow up to monitor disease progression• Earlier use of disease modifying treatments to achieve better outcomes for individuals• Assess the socio-economic and personal impact of such a policy change compared to the current statusThe IMPrESS (International-MultiPlE-Sclerosis-Study)Online survey of 246 people with MS• France 39%• USA 29%• Romania 18%• UK 10%• Germany 4%• Differences between countries for:• Total cost• Direct medical costs• Indirect costs• Quality of life (measured by EQ-5D)• RRMS 66%• SPMS 11%• PPMS 10% • Unknown 13% Reduction in quality of life0.000.100.200.300.400.500.600.700.800.90All sample UK France Germany USA RomaniaUtilityUtility Utility lossHealth status: Aspects identified as having a big impact by PWMSFatigue and weakness 54%Mobility 54%Balance problems and dizziness 49%Usual activities 48%Pain/discomfort 42%Bladder problems 38%These are the top six aspects that respondents believed a new MS treatment should keep under controlChoosing disease modifying treatments: the most important three attributesWhat clinicians said What clinicians said drove PWMS’ decisionsWhat PWMS saidEffectiveness SafetyTolerabilityEffectiveness SafetyTolerabilityConvenience (25%)Doctor’s advice (19%)Other* (19%)Tolerability (17%)Effectiveness (14%)* Side effects (i.e. safety), do not currently take/want to take any medicinesPreferred source of information0% 10% 20% 30% 40% 50% 60% 70%MS specific websitesFamily doctorMS magazines or publicationsHealth websitesOnline forumsSocial mediaOnline support groupsMolecule Indication Evidence from HTA agenciesNICE (UK) TLV (Sweden) HAS (France) SMC (Scotland) IQWIG (Germany)CADTH (Canada)IFNβ 1a IM RRMS DNL DNL LWC LWC N/A N/AAlemtuzumab Active RRMS L L N/A L N/A DNLIFNβ 1a SC RRMS DNL L LWC DNL N/A DNLIFNβ 1b SC RRMS N/A L LWC N/A N/A N/AGlatiramer acetate RRMS DNL N/A L N/A N/A N/ATeriflunomide RRMS LWC L L LWC A DNLDimethyl fumarate Active RRMS LWC LWC LWC L A N/AFingolimod Highly active RRMS LWC L LWC LWC A LWCNatalizumab Rapidly evolving severe RRMSL L LWC DNL N/A LWCHTA Treatment recommendations for MS L= Listed (accepted); LWC= Listed with criteria (restricted); DNL= Do not list (rejected); A= Assessed without decision. N/A = Not assessed for the indicationThere is an urgent need to achieve better outcomes for PWMSThe evidence suggests that this is possible if policy makers address the following issues. Diagnosis, treatment and management goals should be set to provide the best health outcome for every person with MS (Further) robust evidence should be generated and used in order to make appropriate decisions about care management in MS strategies Improve the responsiveness of health care systems to new evidence on MSNext steps• Expand the number of countries and participants• If you are interested in participating, contact:Michela TinelliM.Tinelli@lse.ac.ukThanks to:• All who completed the questionnaire• European Multiple Sclerosis Platform, MS Society UK, MS Trust UK, National Multiple Sclerosis Society, the Romanian Association of Multiple Sclerosis, the Rocky Mountain Multiple Sclerosis Center and Foundation ARSEP - French MS Research Society - who facilitated data collection. • Rozalina Lapadatu, Alessandra Ferrario, Elena Nicod and Olivier Wouters for translating the questionnaires. • Birgit Bauer and Rozalina Lapadatu for additional insights and support in the development of the questionnaires and facilitating their distribution to respondents. • F. Hoffmann-La Roche provided the sponsorship that allowed the LSE to carry out this research.

Towards better outcomes in multiple sclerosis by addressing policy change: the International MultiPlE Sclerosis Study (IMPrESS)

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