The economic impact of multiple sclerosis: a preliminary look at the North American Registry for Care and Research in Multiple Sclerosis
ECTRIMS Online Library. Mao-Draayer Y. Sep 13, 2019; 279551; 290
Yang Mao-Draayer
Yang Mao-Draayer

Abstract: 290

Type: Scientific Session

Abstract Category: Clinical aspects of MS - Economic burden

Y. Mao-Draayer1, T. Livingston2, K. Rammohan3, D. Li4, J. Halper5, S. McCurdy Murphy6, L. Patton6, S. Chrisant7, NARCRMS HEOR Advisory Group

1University of Michigan, Ann Arbor, MI, 2EMD Serono, Wayland, MA, 3University of Miami, Miami, FL, United States, 4University of British Columbia, Vancouver, BC, Canada, 5Consortium of MS Centers, Hackensack, NJ, 6Social & Scientific Systems, Inc, Silver Spring, MD, 7Social & Scientific Systems, Inc, Durham, NC, United States

Background: The North American Registry for Care and Research in Multiple Sclerosis (NARCRMS) enrolled its first patient in December 2016. Along with clinical and imaging data, NARCRMS prospectively collects information about the health care economics of patients with Multiple Sclerosis (MS) and its effects on daily life. Examination of the economic impact of MS provides useful information for patients, providers, payers and society-at-large as well as for the allocation of available resources towards the care of patients with this chronic and debilitating disorder.
Objectives: To define the economic impact of having MS, including the impact on employment and utilization of healthcare resources and to assist our industry partners in implementing health economics outcomes research (HEOR) in decision-making processes and.
Methods: NARCRMS established the HEOR Advisory Group in 2017 and developed a Health-Related Productivity Questionnaire and Health Resource Utilization Questionnaire. The questionnaires were incorporated into the existing Case Report Forms (CRFs) and are completed at enrollment, annual and exacerbation visits for each patient.
Results: As of April 15, 2019 458 people with MS or CIS were enrolled in NARCRMS and 437 have completed the HEOR CRFs. Among those patients who completed the HEOR CRFs, 319 are employed either full time or part time. During the week prior to reporting, 42 reported that MS kept them from work, 104 reported that MS impacted their work and 130 reported that MS kept them from completing household chores. Fatigue was the leading symptom reported to impact both work and household chores. In the three months prior to reporting, 13 patients were hospitalized, 26 patients visited the emergency room, 81 patients visited a general practitioner and 360 patients visited a neurologist.
Conclusions: A preliminary review of the first 437 patients to complete the HEOR CRFs found that 65.5% were employed however 38.5% were underemployed or unemployed due to MS. MS seems to prevent people with MS from realizing their full potential at work and home. Overwhelmingly, fatigue was identified as the cause for this problem. The economic impact of identifying an effective treatment for this symptom of MS cannot be overstated.
Yang Mao-Draayer: received consulting and/or speaker fees from Biogen, Bayer Pharmaceutical, Celgene, Teva, Genentech, Sanofi-Genzyme, and EMD Serono. She also received research support from NIH NINDS R01-NS080821, NIAID Autoimmune Center of Excellence UM1-AI110557, Biogen, Sanofi-Genzyme, Novartis, and Chugai.
Terrie Livingston: an employee of EMD Serono.
Kottil Rammohan: receives grant funding from Roche/Genentech, Biogen, EMD Serono, MedDay Pharma, Novartis, TG Therapeutics, PCORI and the Department of Defense. He also participates in Consulting or Advisory Groups for Roche/Genentech, Biogen, EMD Serono and Novartis.
David Li: received research funding from the Canadian Institute of Health Research and Multiple Sclerosis Society of Canada. He is the Emeritus Director of the UBC MS/MRI Research Group which has been contracted to perform central analysis of MRI scans for therapeutic trials with Roche and Sanofi-Genzyme. The UBC MS/MRI Research Group has also received grant support for investigator-initiated independent studies from Genzyme, Novartis and Roche. He has acted as a consultant to Vertex Pharmaceuticals and served on the Scientific Advisory Boards for Adelphi Group, Biogen and Celgene. He has given lectures which have been supported by non-restricted education grants from Academy of Health Care Learning, Consortium of MS Centers and Sanofi-Genzyme.
June Halper: nothing to disclose
Sara McCurdy Murphy: nothing to disclose
Lisa Patton: nothing to disclose
Sarah Chrisant: nothing to disclose

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