Effective communication is essential to any relationship. Within chronic disease communities, such as the multiple sclerosis (MS) community, the importance of communication is manifold. Clear and effective communication is critical for the relationship between people with MS (PwMS) and their healthcare providers, support service providers, and carers to ensure high-quality care and services, effective disease management, shared decision-making, and informed consent. (Albrecht et al., 2005; Land V Parry and Seymour, 2017) However, MS can be a challenging topic to communicate about. In this study, we evaluate communication confidence within the MS community and assess the impact of an online course about MS (the Understanding MS massive open online course (MOOC)) on communication confidence.

MS has several characteristics that may make effective communication challenging. These include the fact that MS is a relatively rare and highly variable condition that is not well understood in the wider community. Our previous work among enrolees in the Understanding MS MOOC has shown that PwMS and their carers report encountering a lack of knowledge about MS, the invisible symptoms of MS (e.g., fatigue), concern about being perceived as complaining, and uncertainty about the appropriate amount of communication as barriers to communicating effectively about MS. (Campbell et al., 2022)

Further study among participants in the Understanding MS MOOC indicates that participation in the course may result in improved confidence and empowerment among PwMS and their carers (manuscript in review). This work also found that participation in the course improved empathy among healthcare providers in the MS community (manuscript in review). This suggests that participation in the Understanding MS MOOC may improve communication about MS among course participants through information provision.

In this study, we evaluate confidence in communicating about MS among Understanding MS enrolees by addressing the following research aims:

Survey confidence in communicating about MS among a large group of MS community members by:

Assessing MS-related communication confidence among course enrolees.

Evaluating factors associated with communication confidence

Evaluate the impact of the Understanding MS MOOC on MS-related communication confidence among course completers by:

Identifying any significant changes in communication confidence among course completers over a six-month follow-up period.

Determining if changes in communication confidence are correlated with changes in perceived healthcare or service quality, MS knowledge, health literacy, self-efficacy or quality of life over the follow-up period.