College Students and Multiple Sclerosis: Developing a Toolkit for Academic Success

Background: According to the National Multiple Sclerosis Society (NMSS), Multiple Sclerosis (MS) is an autoimmune disease in which the immune system targets its own central nervous system, specifically myelinated nerve cells. Over time damage and scarring to the nerves occurs that disrupts transmission of nerve impulses.1 MS impacts each person differently because the location and amount of the lesions are unpredictable. This variability causes a wide variety of symptoms and presentations to occur. A common initial presentation is vision disturbances due to lesions in the optic nerve, but other symptoms include weakness/fatigue in 75-81% of cases, loss of balance or dizziness in 70% of cases, 65% experience numbness, 50% depression, and 50% experience mobility issues.2 Recently, rates of MS overall have increased from 123,000 in 1980 to 400,000 in 2012, and today 1 million Americans live with MS.3 Advances in early detection of MS have resulted in diagnosis at younger ages. Diagnosis of MS in younger adult and even pediatric populations have been increasing, but research and literature has not kept up with this increase in population demographics.4 This younger age at diagnosis highlights a need for better understanding of how multiple sclerosis impacts students, especially college students that may be advocating for themselves for the first time.2,5

Objectives: The purpose of this implementation research is to develop an evidence based toolkit for college students with Multiple Sclerosis. The specific aims include, (1) Identify and describe challenges college students with MS face and (2) develop tools and resources to facilitate a successful college experience.

Methods: This study used the Re-AIM framework to guide the establishment and implementation of the toolkit. A scooping review of relevant evidence, followed by document and article analysis informed the toolkit development. Upon creation of the toolkit dissemination of the toolkit through a college resource center has been established. Future evaluation of the toolkit will occur as adoption of the toolkit occurs.

Results: College students with MS face a host of symptoms and impairments that can impact their higher education success. Review of the evidence based literature revealed physical limitations, fatigue, vision, slowed processing, heat sensitivity, bowel/bladder difficulties, and depression as factors having an impact of higher education success for people with MS. In addition, college students with MS may be unaware of how to access or request accommodations in the college setting. The resulting toolkit for this population includes resources and information specific to the unique challenges MS can cause in the college setting.

Conclusions: College students with MS face challenges unique to MS. An evidence based toolkit for navigating college with MS is a needed patient centered resource to promote and facilitate college success and overall quality of life.