MS in US Minorities: Continuation of a Research Study Designed to Understand Educational Needs of Hispanic and African American Patients with MS

Background: Recognizing MS patient needs is a critical component to develop the appropriate tools for understanding barriers to treatment and designing successful education interventions. An abundance of literature assesses the impact of MS on quality of life, and a moderate range of material regarding patient needs exists. However, most literature in these areas focuses primarily on the general population, with limited attention to minorities, specifically African Americans (AA) and Hispanics.

Objectives: Understand the needs specific to minority MS patients in order to develop appropriate educational opportunities.

Methods: An online survey was developed in 2014; survey instruments and consent protocols were reviewed and approved by WIRB. The survey was fielded to 247 minority patients (AA, n=160; Hispanics, n=87) with MS in Feb-Mar 2015 to understand varying components of educational need, including their experience with diagnosis, satisfaction with medical care, attitudes regarding clinical trials, barriers, and preferred MS educational sources and topics. Survey invitations were advertised through selected social media outlets, lists of MS patients, and patient advocacy group networks. In this iteration, the study will expand the exact survey to a similar cohort of 175 Caucasian MS patients using the same distribution channels.

Results: The initial results of this study were presented at CMSC 2015, focusing on specific attitudes and information usage of minority patients with MS. These results showed that minority patients are actively seeking information on their disease, chiefly through their managing physician and websites. Additionally, the study confirmed that minority patients are underrepresented in clinical trials. 82% of the patients reported never participating in a clinical trial, but those that have participated have very favorable attitudes towards participating again. Hispanic patients, compared with AA, reported significantly greater impact of MS on their health and greater educational needs.  The addition of a non-minority arm will allow expansion of these findings, comparing the results to a similar cohort of Caucasian MS patients.

Conclusions: The MS specific educational needs and barriers to care in minority MS patients compared with non-minority MS patients will allow for tailored recommendations of educational and informational resources as well as specific solutions to decrease barriers to care for AA and Hispanic patients with MS.