Objective:

Understand the demographic characteristics and access to disease modifying therapies (DMTs) in young adults living with multiple sclerosis

Background:

Multiple Sclerosis (MS) is a distinct condition in young populations, with frequent relapses and earlier progression to irreversible neurological disability compared to adults. Young adults living with MS are at risk for barriers to starting and consistently staying on DMT. However, the characteristics of young adults living with MS, including time to DMT initiation and reasons/rates of DMT non-compliance, have yet to be thoroughly investigated.

Design/Methods:

Retrospective cohort analysis was conducted on patients aged 18-25 with relapsing-remitting MS (RRMS) or clinically isolated syndrome (CIS) at the University of Utah between 2017 and 2025. Patient-level factors and MS-specific clinical details were collected.

Results:

Of the 53 patients identified (75.5% female, 62.3% white), 92.5% were diagnosed with RRMS and 7.5% CIS. DMTs were initiated in 92.5%; B-cell depleting agents (42%), dimethyl fumarate (32%) and S1P receptor modulators (12%) were started most frequently. 44.9% of those on DMTs switched to a higher efficacy DMT due to disease progression (47.8%) and side effects (30.4%). Median time to diagnosis from symptom onset was 51 days [IQR: 12-160 days]. Median time to DMT initiation was 51 days [IQR: 27.25 - 94.25 days]. 38.3% of those on DMTs reported medication gaps, with a median of 105 days without DMTs [IQR: 25.5 - 252.75 days]. Most common reasons for gaps in DMT were poor adherence (42.9%) and insurance/cost issues (28.6%). In the last 12 months, 48.7% did not follow up in the planned time frame and 41.0% did not have timely surveillance imaging. Half of the cohort had either relapses or new lesions on imaging since diagnosis. Among these patients, 39.1% occurred during a gap in DMT.

Conclusions:

Young adults living with MS have high rates of DMT gaps and inadequate timely surveillance and follow-up.