title: Impact of multiple sclerosis relapse: The NARCOMS participant perspective.
abstract: Acute relapses continue to be a significant aspect of multiple sclerosis (MS) on both the epidemiologic level and the individual patient level. Past work demonstrates residual disability from relapses as well as high patient-reported rates of ineffective relapse treatment. To better characterize the impact of MS relapses on the patient, a relapse-specific survey was administered through the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry to 1000 registry participants who had reported at least one relapse in the past 12 months. Thirty percent of respondents confirmed lack of relapse treatment efficacy at one month and at three months. Relapses also impacted socioeconomic measures; for individuals still going to school or working, more than half missed days and their average loss of school or work was 12.7 days. An impact on household tasks was reported by 68% of respondents. A healthcare facility such as a hospital, emergency room or urgent care center was utilized by 20.4% of respondents. The most common relapse symptoms were fatigue, weakness of the lower extremity, sensory symptoms, problems walking, and weakness of the upper extremity. Of the respondents who reported receiving corticosteroid treatment (53.3%), over half reported an adverse event. However, this was not a significant factor in dictating whether or not respondents would seek a different treatment on their next relapse, although 31% would choose a different treatment for their next relapse. Relapses continue to be an impactful experience that requires continued clinical attention. Improved follow-up from relapses and relapse treatment might be beneficial.
authors.affiliation: Department of Medical Affairs, Autoimmune and Rare Diseases, Mallinckrodt Pharmaceuticals, Inc., 26118 Research Road, Hayward, CA 94545, United States. Electronic address: molly.nickerson@mallinckrodt.com.
authors.forename: Molly
authors.initials: M
authors.lastname: Nickerson
authors.affiliation: University of Alabama at Birmingham, Department of Biostatistics, School of Public Health, Birmingham, AL, United States.
authors.forename: Stacey S
authors.initials: SS
authors.lastname: Cofield
authors.affiliation: Dignity Health St. Joseph׳s Hospital and Medical Center, Phoenix, AZ, United States.
authors.forename: Tuula
authors.initials: T
authors.lastname: Tyry
authors.affiliation: University of Alabama at Birmingham, Department of Biostatistics, School of Public Health, Birmingham, AL, United States.
authors.forename: Amber R
authors.initials: AR
authors.lastname: Salter
authors.affiliation: University of Alabama at Birmingham, Department of Biostatistics, School of Public Health, Birmingham, AL, United States.
authors.forename: Gary R
authors.initials: GR
authors.lastname: Cutter
authors.affiliation: University of Manitoba, Departments of Internal Medicine and Community Health Sciences, Winnipeg, Manitoba, Canada.
authors.forename: Ruth Ann
authors.initials: RA
authors.lastname: Marrie
mesh_terms: D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000188:drug therapy* / Q000453:epidemiology*; D020528:Multiple Sclerosis, Chronic Progressive / Q000188:drug therapy / Q000453:epidemiology; D020529:Multiple Sclerosis, Relapsing-Remitting / Q000188:drug therapy / Q000453:epidemiology; D011788:Quality of Life; D012008:Recurrence; D012042:Registries; D016896:Treatment Outcome
keywords: Exacerbation; NARCOMS; Patient-reported outcomes; Relapse; Steroids