Identifying the Nature and Extent of Post-Relapse Rehabilitation Services Utilization in Multiple Sclerosis

Background: Approximately 90% of people with multiple sclerosis (MS) experience periodic and unpredictable relapses as part of their disease course. A relapse is typically accompanied by new or worsening symptoms that can have a significant effect on individuals’ health and quality of life. Relapses are commonly treated by steroids. Steroids may reduce the acute inflammation but they do not address the challenges of managing symptoms and disabilities accompanied by relapses. Up to 58% of individuals report a measurable and sustained effect of relapses on disability. Studies suggest that rehabilitation can play a significant role in managing health and quality of life of people with MS. Yet, current evidence does not paint a clear picture as to what types of rehabilitation services are used or if rehabilitation services are being utilized post-relapse to enhance recovery. Objectives: This study aims to document the nature and extent of the use of rehabilitation services post-relapse. Methods: Cross-sectional study using convenience sampling that engages individuals with MS in a telephone survey.  We are surveying a total of 138 adults in North America (50% in USA and 50% in Canada) who experienced at least one relapse six months prior to their interview.  Multiple recruitment methods are being used: (1) direct invitations mailed to selected individuals from the North American Research Committee on Multiple Sclerosis and the participating MS clinic in Canada; (2) study advertisements posted on National MS Society and MS Society of Canada’s website. Interested individuals are asked to call the research office in Canada using a toll-free number. Participants are asked to answer a series of questions about their most recent relapse, recovery process and post-relapse rehabilitation services that they used or attempted to use to manage the relapse.  The survey development was informed by the findings from our recent qualitative study on the post-relapse management, Andersen’s behavioral model of health services utilization and existing studies of health services utilization in MS. The survey also includes validated scales (i.e., Patient Determined Disease Steps Scale, EuroQoL-5D, Control Preferences Scale and a socio-demographic questionnaire). All data are being collected between December, 2013 and June, 2014. Results: Descriptive statistics will be used to summarize characteristics of participants and post-relapse rehabilitation services utilization. Conclusions: The newly gathered data will help us better understand the types of rehabilitation services that people with MS use or consider for managing relapses. The information may be useful for improving future MS care to facilitate individuals with MS to enhance their recovery from relapses.