Alexis Crispino1, Yahaira Rivera Bobadilla3, Amanda Montague2
1Mission Delivery, Multiple Sclerosis Association of America, 2Multiple Sclerosis Association of America, 3Mission Delivery, MSAA
Objective:
Each year, thousands of individuals contribute time, energy, resources, and personal health information to inform research, however, dissemination of findings often ceases at the clinical level. A shift in the paradigm toward collaboration and strategies that inform all contributors to the research lifecycle is essential to continuing to build bridges and empower research engagement.
Background:
People with multiple sclerosis often bear excess burden when seeking quality equitable care for managing such a complex and chronic disease. Understanding perceptions among diverse populations of people living with MS can help to inform differing stakeholder groups while also offering an opportunity to create a sense of community in a potentially isolating health issue.
Design/Methods:
The development and review of the population survey included experts in MS care and was distributed via email by the Multiple Sclerosis Association of America. Archetypal personas created with quantitative-driven insights will help to transform data into engaging materials that inform multi-stakeholder groups of the perception of barriers for people living with MS.
Results:
775 individuals shared their experiences through the 20-question survey. Respondents were between the ages of 26 and 75 years old and primarily reported being diagnosed with MS within the last three decades. 51% of respondents reported being unable to work due to their disability, with 49% reporting limited support services available, including ADA, transportation, and other community-based health resources. The highest-rated challenges for managing wellness were cost of care and treatment, employment inconsistency, and difficulty completing routine tasks.
Conclusions:
A national patient advocacy organization in partnership with a global creative agency is distilling these outcomes into digestible and exciting content to inform advocacy, outreach, and improvement efforts. Qualitative information is being applied to humanize the self-perceived imbalance in health care quality and access into individual sample journeys quantified in natural groupings by socioeconomic characteristics including age and income level.