SEATTLE – according to data presented at the annual meeting of the Consortium of Multiple Sclerosis Centers. The disease appears to prevent people from achieving their full potential at work and at home, largely because of its associated fatigue, said the researchers. “The economic impact of identifying an effective treatment for this symptom of MS cannot be overstated,” said Terrie Livingston, PharmD, head of patient outcomes and solutions at EMD Serono in Wayland, Massachusetts, and colleagues.
The research results from an initiative by the North American Registry for Care and Research in MS (NARCRMS). Since December 2016, NARCRMS has prospectively collected clinical and imaging data, information about patients’ health care economics, and data about the effects of MS on daily life. To examine the economic impact of MS and to help implement health economics outcomes research (HEOR) in decision-making processes, NARCRMS established the HEOR Advisory Group in 2017. The registry created a Health-Related Productivity Questionnaire and Health Resource Utilization Questionnaire, both of which were incorporated into the existing case report forms. Patients complete these questionnaires at enrollment and at annual and exacerbation visits.
As of January 2, 2019, NARCRMS had enrolled 378 people with MS into the registry, and 368 had completed the HEOR case report forms. Among the respondents, 270 (73%) are employed either full or part time. During the week before reporting, 39 respondents (11%) reported that MS kept them from work, 93 (25%) reported that MS affected their work, 105 (29%) reported that MS stopped them from finishing household chores, and 140 (38%) reported that MS affected their household chores. Fatigue was the symptom most commonly reported to affect work and household chores. In the 3 months before reporting, 13 patients (4%) had inpatient hospital stays, 24 patients (7%) visited the ED, 71 patients (19%) visited a general practitioner, and 296 (80%) patients visited a neurologist.
The study had no sponsor. Several of the study authors reported receiving compensation from companies such as Biogen, Celgene, Genentech, Novartis, Sanofi Genzyme, and Teva.