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

Background: Identifying MS patient needs is a critical component to developing the appropriate tools for identifying 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, with increased attention paid to this area in the last few years. However, most literature in these areas focuses primarily on the general population, with limited attention to minorities, specifically African Americans and Hispanics.

Objectives: This study was conducted to understand needs specific to minority patients in order to develop targeted educational opportunities for this population.

Methods: A survey was developed to understand varying components of patient educational need, including experience with MS diagnosis, satisfaction with quality of medical care, attitudes regarding clinical trials, barriers to medical care, preferred MS educational sources and topics, and unmet MS educational needs. Screening questions were designed to ensure that the survey would be directed to US minorities, specifically African American and Hispanic patients, and were available in both English and Spanish. Data are being collected using an online survey system and analyzed using descriptive and inferential statistics. Survey items, including socioeconomic demographics, years with MS, and current treatment regimen, will be used to stratify the responses and help understand specific needs of this community.

Results: Data are expected to be collected from 250 patients, with a minimum of 50 in each minority group; the study is currently ongoing.

Conclusions: Presented results will show MS-specific educational needs identified by minority patients, comparisons with published needs of the MS community at large, and recommendations for educational and informational channels to best address these needs.