JMIR Publications

ABSTRACT

Background:

Multiple Sclerosis (MS) is a chronic neurological disease that starts in young adulthood and can significantly affect Quality of Life (QoL) due to various symptoms and the risk of disability. MS affects directly the people living with the disease and indirectly their relatives and family caregivers.

Objective:

The objective of this social media analysis was to identify the main topics of discussion of people affected by MS and their perceptions of MS impact on their QoL.

Methods:

Publicly available French messages, posted between January 2017 and October 2022, were retrieved using an extraction query that contained keywords related to MS. The effects on QoL were detected using a machine learning algorithm, specifically trained on social media data. Five specific models covered the following health-related QoL dimensions: physical wellbeing, psychological wellbeing, daily activities (including professional and academic), social/relational wellbeing, and material wellbeing. Descriptive statistics were provided and illustrated with quotes from social media.

Results:

The analysis corpus for the 2017-2022 period included 3,225 messages corresponding to 2,034 different social media users, either people living with MS (20%) or family caregivers (80%), identified from 32 sources. Women represented 42.5% and men 28.2% of social media users (gender unknown for 29.3%) and their mean age was 35 years. The two main themes of posts were “Caregivers and family members” (32%) and “Disability” (24%). Overall, 847 messages described at least one impact of MS on QoL: relational/social (50.9%), physical (33.5%), psychological (9.0%) and material wellbeing (3.8%) as well as daily activities (2.8%).

Conclusions:

Our findings confirm the high MS impact on everyday life and QoL for both patients and family caregivers. Caregivers were the most numerous to express themselves and post messages on social media. The most affected QoL dimension was relational/social wellbeing, which is probably linked to the fact that social networks and digital patient communities are a place for discussion, for sharing experiences and looking for support. These findings confirm that social media is a way to express and look for support and understanding for people affected by MS. It also shows that social media provides an opportunity to discover the fears, questions, needs and thoughts of those affected by the disease, particularly caregivers, who are rarely considered in research studies.