MS Specific Healthcare Utilization in the Narcoms Registry

Background: The NARCOMS (North American Research Committee on Multiple Sclerosis) Registry is a large, volunteer, self-report registry for multiple sclerosis (MS). Participants provide health information at enrollment and semi-annually thereafter.

Objectives: To compare MS-specific healthcare utilization, including neurologist visits and brain MRIs according to relapse activity and disease progression.

Methods: Online respondents to the NARCOMS Fall 2015 Update survey, who provided information regarding relapses, disease progression, MS Doctor/Neurologist visit, MRI acquisition, and current MS disease course were included.

Results: As of November 20, 2015, 4550 (%) completed sufficient information for analysis, with 76.2% Female, mean current age 56.2 (SD 10.9), mean duration of disease 18.1 (8.4) years, 58.8% current RRMS, 22.5% SPMS, and 8.0% PPMS. Of these 17.9%, (807/4508) reported a relapse; 36.4% (1655/4550) progression in the prior 6 months; 74.3% (3379) reported seeing their MS Doctor/Neurologist within the last 6 months 12.4% (562), 7-11 months, 6.4% (293) 1-2 years, 6.9% (316) more than 2 years; 30.0% (1367) had an MRI in prior 6 months, 17.2% (784) 7-11 months, 22.5% (1025) 1-2 years, 29.8% (1354) more than 2 years There was no association with timing of the most recent visit to MS Doctor by gender or current age (both p>0.05). Those who reported a relapse in the prior 6 months were more likely to have seen their MS Doctor in the prior 6 months (80.8%, 652/807) compared to no relapse (72.9%, 2459/3372) or were unsure about a relapse (74.2%, 244/329, both p<0.02). Those reporting a worsening of symptoms in the prior 6 months were slightly more likely to have seen their MS Doctor in the prior 6 months (76.5%, 1266/1665 vs 72.7%, 1762/2423, p=0.0386).  Excluding those that have never had an MRI (n=4530), females were more likely to have had an MRI in the prior 6 months (p=0.0286), those who had a relapse in the prior 6 months were more likely to have had an MRI in the prior 6 months (p<0.0001) but there was no association with symptom worsening (p=0.56). Both recent MS Doctor and MRI visits were associated with current RRMS (both p<0.0001).

Conclusions: In this preliminary cohort, more than half of respondents report it has been more than 1 year since they have had an MRI, while more than two-thirds have seen their MS Doctor in the prior 6 months.  Relapse activity and symptom worsening are associated with the timing of seeing an MS Doctor but not with having an MRI. Data collection will continue through December 2015.