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BYLINE: Ethan Simmons
Newswise — For clinical trials centered on individuals with Alzheimer’s disease and related dementias, what types of information are family caregivers given during the research process? A research team nested in the College of Applied Health Sciences recently evaluated that question by analyzing ADRD trials from the past 30 years.
What they found in their report, published in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, was that less than half of the clinical trials the researchers sampled specified the caregivers’ responsibilities.
Given that caregivers are often surrogate decision-makers for participants and are responsible for multiple tasks throughout a clinical trial, the finding stuck out.
“The people who are finding these trials are often caregivers, they’re probably deciding whether to enroll their relatives and whether they have the bandwidth to support their relative through that intensive process,” said co-author Mina Raj, assistant professor in the Department of Kinesiology and Community Health. “And yet less than half of the time they’re given information about what they’re supposed to do.”
For this report, funded by the Center for Social and Behavioral Sciences at the University of Illinois, Raj collaborated with Raksha Mudar, professor in the Department of Speech and Hearing Science at Illinois, and Dr. Vania Leung, a primary care physician in UI Health, which is part of the University of Illinois Chicago, and an assistant professor of Clinical Medicine at UIC.
Two Community Health students took a prominent role in the report: Armando Miranda, who graduated with his master’s degree in the spring, and Eve Rubovits, currently a senior in the program.
Raj’s research focuses on the ways family caregivers can be better integrated into healthcare settings and teams. The report’s topic arose from a separate study Raj conducted a couple of years ago, which centered on Asian American family caregivers, she said. The study combined qualitative interviews and surveys to learn about the caregivers’ challenges navigating the healthcare system.
What consistently came up, Raj said, were the difficulties of handling the intensity and demands of clinical trials.
“Dementia is underdiagnosed and underreported due to diagnostics that are not culturally relevant along with stigma within these communities,” she said. “Caregivers in our study experienced a lot of problems getting their relatives enrolled in clinical trials for Alzheimer’s and dementia-related diseases.”
For example, a lot of trials expect that participants are fluent in English, which would imperil results from screening measures such as word recall tests. Caregivers have additional responsibilities in these situations, including translation, and they are often overwhelmed and underinformed about their responsibilities.
“This led to the question, what are study teams actually telling participants and caregivers about their responsibilities?”
To expand on that question, the team dug deep into ADRD clinical trials, sampling from more than 250 trials completed between 1990 and 2021.
The two students, Rubovits and Miranda, spearheaded the data analysis, qualitatively coding information from relevant study information pages on clinicaltrials.gov, a website commonly used to identify clinical trials. The pair also reviewed the trials to evaluate how many trials included information on caregivers’ responsibilities, and what types of responsibilities were reported.
Rubovits joined Raj’s lab after her freshman year through the Students Pursuing Applications, Research and Knowledge program, also known as SPARK, which connects AHS undergrads to research opportunities. Six months of poring through clinical trial data was the most involved Rubovits felt in any academic study.
“I definitely learned a lot more technical and hard-research skills,” she said. “Having a mentor like Dr. Raj, and working with grad students like Armando has been so helpful, and has honestly shaped my career goals toward wanting to do research.”
Their findings that less than half of the analyzed trials contained instructions for caregivers gave way for a proposal: Clinical trials for ADRD should consistently provide caregivers information about their responsibilities.
“At a baseline, we need to tell our caregivers things like how many times per week they’re going to be transporting their relative back and forth to the study site. We need to tell them the risks and benefits to participating,” Raj said. “Often [instructions] are not clear or accessible, for example through different languages. In other cases, no information is provided at all.”
Researchers are already approaching new ground based on the study’s finding: The broader goal was to understand how to include racial and ethnic minority adults in clinical trials by engaging their family caregivers, Raj said. She has surveyed more than 100 Asian American, Hispanic and Latino caregivers for what information they’d seek in clinical trials for ADRD patients.
“We wanted a baseline understanding of how caregivers are involved right now—this was the first step,” Raj said. “We haven’t really asked caregivers what types of information they want to see in those information pages to prepare them for caregiving responsibilities, and that’s what we’re doing right now.”
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