MS Self™, an Educational Application for People with Multiple Sclerosis (MS): Patient Experience in Recording MS-Related Symptoms and Daily Activities

Background: Dialogue between people with multiple sclerosis (MS) and their healthcare providers (HCPs) is integral to a goal-oriented strategy for managing MS.

Objectives: MS self™ is a multicomponent application (App) developed to proactively aid in MS-related record-keeping and disease management, and to facilitate patient dialogue with their HCPs and caregivers.

Methods: The App (version 1.0 launched on November 20, 2013; current version: 1.6), which is FitBit-enabled and contains >40 Fact Cards with searchable topics and planned updates, can generate a concise report to share with HCPs during visits. In this longitudinal analysis, de-identified and aggregated data with reference to MS-related symptoms, mobility impairment and impact on daily activities were tracked using Google Analytics from December 1, 2013 to November 1, 2015.

Results: An estimated 11,120 users, as determined by Google Analytics, logged 84,886 sessions; the average session lasted 6 minutes 39 seconds. In these sessions, users utilized the journaling feature of the app and recorded multiple events. A total of 763,307 events were tracked. Of these, 172,174 events were related to MS symptoms, which included fatigue (13.3%), numbness (11.2%), pain (10.4%), loss of balance (7.3%), spasticity (6.8%), poor coordination (6.1%), vision problems (6.0%), bladder issues (5.5%) and gait disturbance (5.4%). Of the total events, 42,177 pertained to mobility; 21% of these events indicated some mobility impairment, whereas 10.5% indicated significant impairment. Among the daily activities, housework was the most frequently recorded event (n=11,312 events); in this category, 18.3% of the events had at least some issues with mobility doing housework, whereas 15.4% had significant issues. In the category of walking (n= 9622 events), 16.5% of the events had some issues, whereas 16.6% indicated significant issues. In the category of social function (n=3915), 6.3% of the events indicated some issues in mobility, whereas 6.0% had significant issues.

Conclusions: Findings describe the data usage of the App and the patient experience in recording MS-related symptoms, specifically mobility impairment and the impact on activities of daily living. Longitudinal recording of MS symptoms and activities may facilitate patients to better communicate with their physicians.

Funded by Acorda Therapeutics Inc.