Presented By: Minnatallah Eltinay, Carle Illinois College of Medicine, University of Illinois at Urbana-Champaign
Co-Authors: Malachy Bishop, University of Wisconsin-Madison
Chung-Yi Chiu, University of Illinois at Urbana-Champaign
Vaishnavi Sridharan, University of Illinois at Urbana-Champaign

Purpose 
This study presents novel approaches for the exploration of healthcare experiences of individuals with multiple sclerosis (MS). Objectives include: 1) assessing prevalent themes encapsulating the experiences of MS patients concerning medical tests and treatments, and 2) gaining insights into their needs and feedback to promote tailored medical practices and education.  

Methods 
A nationwide online free-text survey targeted a cohort of MS patients, yielding 408 responses on "medical tests." Predominant themes encompassed challenges of costly healthcare and inadequate communication by healthcare providers. Similarly, 347 responses on "medical treatments and medications" revealed themes of expensive healthcare and unmet needs for assistance and responsiveness from providers.  

Results 
Our findings unveil five themes associated with experiences of MS patients on medical tests and treatments. For medical testing, these include: 1) Absence of tests/imaging and neglect of health concerns, 2) Challenges in healthcare service accessibility, entailing financial disparities, 3) Issues with provider communication and unhelpfulness in healthcare interactions, 4) External support: third-party coverage and assistance from drug manufacturers; 5) Concerns about excessive tests, medications, and imaging. For medical treatments, themes include: 1) Absence of medical treatment or issues/satisfied patient, 2) External support: third-party coverage and assistance from drug manufacturers, 3) Financial challenges due to high costs and insurance coverage issues, 4) Negative patient-provider interactions: disrespect, poor communication, unhelpful provider; 5) Patient-driven research and reliance on non-physician healthcare providers for advice.  

Conclusions 
The study highlights financial and social burdens related to medical tests and treatments. From these findings, we support integrating culturally tailored medical applications and education for MS patients. We suggest adopting tailored practices and targeted education to improve current and future healthcare providers' understanding of MS patients, aiming to recognize and alleviate barriers in fostering supportive healthcare environments.