Factors Correlating with Patient-Reported Measurements of Stigma and Satisfaction with Social Roles and Activities Reported By the Iconquerms Network

Background:

iConquerMS™ is an MS patient-powered research network established in 2014. To date, >3,400 people with MS have joined iConquerMS™ and consented to contribute their data on the iConquerMS.org website. Along with MS characteristics, demographics, and the PROMIS® Global Health Survey, participants complete the Neuro-QoL Adult Short Forms (ASF). The provision of standardized quality of life information by a large cohort affords the opportunity to analyze aspects of living with MS that haven’t traditionally been measured in other research settings. Because people with MS wish to remain independent and able to function well in society, we are interested in learning how these abilities are reflected in the Neuro-QoL ASF data and in identifying factors that correlate with responses in relevant Neuro-QoL domains.

Objectives:

1. Characterize the responses to the Neuro-QoL ASF in the areas of Stigma and Satisfaction with Social Roles and Activities.
2. Identify factors that strongly correlate with scores on these two QoL domains.

Methods:

A de-identified dataset from the survey responses of about 1,400 respondents was created in May 2016 for an initial characterization of the network. For statistical analyses, Likert Scale questionnaire answers were converted to integer values. Pairwise comparisons of the responses to each question in the Neuro-QoL ASF for each MS subtype were performed using Chi-squared statistics or Fisher’s Exact Test.

Results:

Responses to Neuro-QoL ASF questions highlight the QoL areas of concern to people with MS. Initial analyses of the Neuro-QoL data revealed statistically significant differences between MS subtypes in responses to “I am bothered by limitations in my regular activities with friends” (Satisfaction with Social Roles and Activities question) and “Because of my illness, I felt left out of things” (Stigma question). Additional analyses will be presented on relationships between questions in these two domains and factors such as disease duration, socioeconomic characteristics, relapse history, and other Neuro-QoL domains such as lower extremity function.

Conclusions:

iConquerMS™ participants report feelings of being left out, embarrassment, and disappointment with their abilities to engage with others as measured by the Neuro-QoL domains Stigma and Satisfaction with Social Roles and Activities. Differences in the strength of these feelings were detected among MS subtypes. Further analysis will provide additional understanding of these QoL domains. Future semiannual data from the ongoing longitudinal study (REAL MS™) will inform temporal and, possibly, causal relationships among QoL areas and other MS characteristics.