STOCKHOLM — Multiple sclerosis (MS) seems to prevent individuals from realizing their full potential at home and work, with fatigue being overwhelmingly identified as the cause, according to a preliminary review of individuals who completed the health economics outcomes research case report forms from the North American Registry for Care and Research in Multiple Sclerosis (NARCRMS). This according to research presented at the 35th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS), held September 11-13, 2019 in Stockholm, Sweden.
NARCRMS — the first North American based physician based registry— has been prospectively collecting imaging data, clinical data, information on health care economics, and effects on daily life in individuals with MS since December 2016. The aim of this program was to define the economic impact of a diagnosis of MS, including its impact on healthcare utilization and employment, and to assist industry partners in implementing health economics outcomes research in the decision-making processes.
The registry developed a Health-Related Productivity Questionnaire and Health Resource Utilization Questionnaire as part of the Health Economics Outcomes Research Advisory Group, established in 2017. Incorporated into existing case report forms, these questionnaires are completed at enrollment and at annual and exacerbation visits. As of April 2019, the health economics outcomes research case report forms had been completed by 437 of the 458 individuals with MS or clinically isolated syndrome enrolled in NARCRMS. Of these 437 respondents, 319 were working full- or part-time.
In the week prior to reporting, 42 respondents stated that MS kept them from work, 104 stated that MS affected their work, and 130 stated that MS kept them from completing household chores, with fatigue being the leading symptom responsible for affecting functioning both at work and at home. In the 3 months prior to the report, 81 respondents visited a general practitioner, 360 visited a neurologist, 26 visited the emergency room, and 13 respondents were hospitalized.
Preliminary findings revealed that of first 437 patients to complete the health economics outcomes research case report forms, 65.5% were employed and 38.5% were underemployed or unemployed due to MS. Of those who were employed, 14% reported missing work due to MS or MS treatment and 34% reported that MS impacted their work output in the week prior to reporting.
Researchers concluded that “MS seems to prevent people with MS from realizing their full potential at work and home” and that “overwhelmingly, fatigue was identified as the cause for this problem.” They go on to state that “the economic impact of identifying an effective treatment for this symptom of MS cannot be overstated.”
Disclosure: Several study authors declared affiliations with the pharmaceutical industry. Please see the original reference for a full list of authors’ disclosures.
Mao-Draayer Y, Livingston T, Rammohan K, et al. The economic impact of multiple sclerosis: a preliminary look at the North American Registry for Care and Research in Multiple Sclerosis. Poster presentation at: 35th Congress of the European Committee for Treatment and Research in Multiple Sclerosis; September 11-13; Stockholm, Sweden. Abstract 290.