First Advisor

Sherril B. Gelmon

Term of Graduation

Spring 2020

Date of Publication

6-2-2020

Document Type

Dissertation

Degree Name

Doctor of Philosophy (Ph.D.) in Health Systems and Policy

Department

Health Systems and Policy

Language

English

Subjects

Clinical trials, Alzheimer's disease -- Patients -- Attitudes, Caregivers -- Attitudes, Dementia -- Research

DOI

10.15760/etd.7337

Physical Description

1 online resource (xv, 345 pages)

Abstract

The need to increase ADRD research participation has become more pressing as the prevalence of ADRD increases. Nearly 70,000 Oregonians and 7 million people in the United States live with ADRD, and this number is expected to increase by 200% by 2050 without identification of an intervention to halt its increase. Developing mechanisms for effective care and treatment depends on implementing research with numerous participants. Historically, ADRD research programs have had difficulty recruiting and enrolling individuals into studies for a variety of reasons. Given low recruitment rates, the interest in researching and evaluating effective strategies to recruit specifically for ADRD research has increased.

This dissertation asks "What are the factors affecting clinical research enrollment among individuals with ADRD? This study has three specific aims: Aim 1: Identify organizational, system, and policy factors that impede or enhance clinical research enrollment among people with ADRD within the Portland metro area; Aim 2: Describe personal factors that persuade or dissuade individuals with ADRD from enrolling in clinical research; and Aim 3: Develop motivational strategies and policy recommendations based on the findings from Aims 1 and 2.

Semi-structured interviews were conducted in two phases with ADRD clinicians, researchers, advocates, people living with ADRD, and caregivers. A community advisory board (CAB) comprised of clinicians, researchers, advocates, people with dementia, family caregivers, and older African Americans was established for this project. The CAB helped develop recruitment and dissemination strategies, modify protocols, and interpret findings. All protocols were approved by the Portland State University Institutional Review Board.

Nine clinicians, researchers, and advocates who were employees or volunteers with health, research, and advocacy organizations of varying sizes and structures were interviewed in Phase 1. Several findings emerged from the interviews. Federal policy attempts to streamline research studies have not resulted in the intended outcomes at the local level. People with ADRD and caregivers have a lack of awareness of research opportunities. In some cases, this was due to lack of provider knowledge; in others, it was due to organizational directives to not discuss this topic or a provider's personal preference. Research opportunities are not shared in places where people with ADRD and their caregivers are likely to congregate. Interviewees were often hesitant to join community collaborations or formal partnerships, and many were weary of including people with ADRD in their advisory boards.

In Phase 2, twelve dyads of people with ADRD and their caregivers (n=24) were interviewed. Many interviewees were unaware of dementia studies, which was surprising as many interviewees were recruited from organizations with rich knowledge of research opportunities. One's perceived value of ADRD research did not increase their likelihood of joining a study. Many caregivers either did not have or did not want to use limited free time to be a study partner; however, several caregivers noted that they would participate in a study if provided some sort of caregiver benefit to ease their burden, such as support, education, or respite. A substantial number of interviewees indicated they avoid research because it involves taking study drugs.

The Robert Wood Johnson Foundation's Culture of Health Action Framework was used to conceptualize motivation strategies and reflect elements that describe research participation among people with dementia. Six strategies were identified to improve dementia clinical research participation: 1) Identify and promote local champions for ADRD clinical research participation; 2) Promote policies and processes that incentivize cross-sector collaboration; 3) Recognize caregivers as full research participants; 4) Include people with ADRD and caregivers in the research design process; 5) Offer alternative options to reduce participation burden; 6) Evaluate and improve relationships between healthcare/research staff and patients/participants. These strategies can be used in conjunction with the Culture of Health Action Framework as a roadmap to form organization-community partnerships, facilitate motivation and empowerment, give decision-making power to people with ADRD and promote a local culture of research.

This study contributed to the literature by providing contextually relevant factors affecting clinical research participation as well as providing recommendations to improve recruitment. Further, this study successfully demonstrated that including people with dementia and caregivers on an advisory board can be effective, and the use of a CAB improves the study design and interpretation of findings. Through the findings and conclusions of this study, the potential exists to increase research participation in Portland, OR, and can be contextually relevant in other geographic areas where ADRD research is conducted.

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Persistent Identifier

https://archives.pdx.edu/ds/psu/33280

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