Author ORCID Identifier

0009-0006-5686-669X

Date of Award

Spring 6-14-2025

Document Type

Thesis (Master's)

Department or Program

Master of Arts in Liberal Studies

First Advisor

Tina Foster

Second Advisor

Paul Batalden

Third Advisor

Rena Mosteirin

Abstract

Nearly a million people in the U.S. have Multiple Sclerosis (MS), a progressive neurological disease. People with MS (PwMS), are more likely to have a decreased quality of life (QoL) and are at greater risk for unemployment, loneliness, and depression than people without MS. As MS symptoms can include fatigue, balance issues, mobility problems, and changes to bladder and bowel function, managing MS requires patient engagement that includes coordination of care between neurology, primary care, and specialists. This thesis was researched and written by a PwMS who has worked in collaboration with her neurologist, Dr. Andrew D. Smith III, and a research team gathered through the ICoHN Co-Value study, an ongoing community of practice (established in 2019) that focuses on healthcare co-production: an approach that views healthcare as a service that can be co-designed by the provider of the service and the end-user.

Research shows that people with chronic conditions who can demonstrate patient activation, the skills and confidence that equip patients to become actively engaged in their healthcare, have better health outcomes and experiences. Educational programs that facilitate PwMS engagement with their care and self-management have led to reduced ER visits and hospitalizations. This thesis presents a toolkit that could be used to facilitate PwMS self-management and patient activation in clinical practice through educational activities designed to facilitate healthcare production between PwMS and providers.

The toolkit’s curriculum aligns with the Multiple Sclerosis Self-Management Scale (MSSM-R), an instrument that measures behaviors contributing to PwMS self-management, including MS Knowledge and Information, Healthcare Provider Relationship and Communication, Social/Family Support, Treatment Adherence/Barriers, and Health Maintenance Behaviors. Written for an audience of PwMS, the toolkit includes an educational overview of self-management factors presented in the MSSM-R. and is a prototype of an educational quality improvement initiative that could be tested and administered in clinical practice in conjunction with administration of the MSSM-R.

In addition to the curriculum for self-management, the thesis includes resources for building healthcare literacy, potential opportunities for co-production in practice, and the author’s reflections on her lived experience with MS.

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