The iConquerMS™ network, created to obtain data from individuals with multiple sclerosis (MS) for research purposes, highlights areas of quality of life that affect people with relapsing and progressive forms of MS and provides a substantial basis for future research, according to data presented at ACTRIMS Forum 2018 in San Diego, California.
Robert N McBurney, PhD, from the Accelerated Cure Project for MS, presented the data at the conference. To date, more than 4000 people with MS have joined the iConquerMS™ network and have consented to provide data for research purposes. Participants provide data from 4 baseline surveys, including a demographics survey, an MS characteristics survey, the Neuro-QoL Adult Short Form survey, and the PROMIS Global Health Survey.
The investigators assessed the baseline survey data from more than 2000 respondents to determine differences between symptoms, functioning, and quality of life for individuals with MS in those who self-reported relapsing MS vs those who reported progressive forms of MS.
In patients with relapsing MS, the 5 most affected areas of quality of life, in order of descending severity, were fatigue, satisfaction with social roles, sleep disturbance, cognitive function, and anxiety. In addition, for patients with progressive forms of MS, the most affected areas of quality of life were satisfaction with social roles, fatigue, lower extremity function, ability to participate in social roles and activities, and sleep disturbance.
“This characterization of the iConquerMS™ network highlights the quality of life areas that affect people with different forms of MS the most and provides an excellent basis for future research,” the researchers concluded.
McBurney RN, Chen M, Schmidt H, Loud S, Kolaczkowski L. Differences in symptoms, functioning, and quality of life between people with relapsing versus progressive forms of multiple sclerosis. Presented at: ACTRIMS Forum 2018; February 1-3, 2018; San Diego, CA. Abstract #P216.