Author ORCID Identifier

0000-0003-2677-8972

Date of Award

Spring 5-10-2024

Degree Type

Thesis

Degree Name

Master of Public Health (MPH)

Department

Public Health

First Advisor

Prof. Jalayne Arias, JD, MA

Second Advisor

Dr. Karen Neilsen, PhD

Abstract

INTRODUCTION: The care pathway of people with Frontotemporal Dementia (FTD) is strongly influenced by differences in health insurance coverage. Medicaid expansion under the Patient Protection and Affordable Care Act (ACA) has been demonstrated to impact the care pathway of adults with chronic conditions such as cancer, mental health disorders, and cardiovascular diseases. Yet, no study has focused on its impact on the care pathway of people with FTD. This study hypothesized that people living in states that have expanded Medicaid under ACA have better care pathway outcomes than their counterparts.

METHODS: I analyzed self-reported data of caregivers for people with FTD from the Association for Frontotemporal Dementia (AFTD) Insights Survey. Variables related to the care pathway included the diagnosis journey (defined by misdiagnosis and number of doctors consulted before FTD diagnosis was made), treatment of FTD symptoms (i.e., use of prescription and over-the-corner medications, cost-related drawbacks to prescription medications, and non-pharmacological management), and level of functional impairment as a proxy for quality of life. Individuals diagnosed with FTD were grouped based on the “Medicaid expansion status” of the state they lived in. I used Pearson chi-squared tests to compare the care pathway of individuals with FTD living in states based on their Medicaid expansion status at the time of their diagnosis. Statistical significance was defined as p-value < 0.05.

FINDINGS: People diagnosed with FTD in states with Medicaid expansion status had a better diagnosis journey. Specifically, in states with Medicaid expansion status, we observed the lowest proportion of people with FTD who experienced misdiagnosis (44.4%, p=0.04) and highest proportion who consulted only 1 or 2 doctors before FTD diagnosis was made (46.7%, p=0.04). However, other aspects of the care pathway, such as the experience of individuals related to the use of prescription medications (p=0.05), non-pharmacological management (p=0.7) to treat FTD, cost-related drawbacks to prescription medications (p=0.06), and the patient’s level of functional impairment (p=0.3) did not significantly differ across states based on their Medicaid expansion status.

CONCLUSION: This study demonstrated that, within their care pathway, the diagnosis journey of people with FTD was more favorable in states that expanded Medicaid under ACA. This study provides insights into the potential inequalities in the diagnosis journey of people with FTD associated with inconsistent health insurance coverage. Therefore, this study set the stage for future studies aimed at informing health policies to improve the diagnosis experiences of patients with FTD.

DOI

https://doi.org/10.57709/36981269

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