Objective:

The Ecosystems Framework research project aims to amplify the voices of individuals with multiple sclerosis (MS) and their care teams, identifying barriers to care and informing interventions to drive systemic change.

Background:

MS disproportionately affects medically underserved communities, leading to significant barriers in care, such as limited access to specialists, cultural differences, and insurance challenges. To address these issues, this program aims to create health literacy interventions informed by the lived experiences of MS patients, healthcare providers, and advocates, improving access to resources and enhancing the quality of life for those affected.

Design/Methods:

During the summer of 2024, qualitative research was conducted to explore the experiences and challenges of individuals with MS, as well as perspectives from multi-stakeholders and clinicians. Remote interviews and focus groups were held with people with lived experience, advocates, and care teams across four regions: Inland Empire (CA), Central Texas, Atlanta (GA), and Upstate New York. Each region focused on specific issues, such as access to MS specialists, cultural humility, navigating insurance challenges, and transportation. This research fostered dialogue and community collaboration, providing insights into the nuanced challenges faced by MS communities in these areas.

Results:

Key insights revealed the frequent misinterpretation of MS symptoms, the influence of race and culture on diagnosis and treatment timelines, and the prevalence of emotional challenges such as depression and hopelessness after diagnosis. Other organically emerging themes included delayed diagnosis, support groups, public awareness and misperceptions, trust issues, and employment concerns. Drawing on these findings, informed by the experiences of people living with MS, advocates, and care teams, we identified several potential intervention opportunities aimed at improving the lives of those affected by MS.

Conclusions:

Insights from the qualitative and quantitative analysis phases of the Ecosystems Framework have shaped the development of community-based interventions, which will be piloted and evaluated for their impact.