Barriers to Alzheimer’s Disease (AD) Clinical Trial Participation in Racially Diverse Population of Hawaii
Authors: Anson Y Lee1,2, Darrell Guittu1,3, Rexton Suzuki1,4, Lauren Pak1,5, Kyle M Ishikawa, MS2,6, Connor Goo1,2, John J Chen, PhD2,6, Enrique Carrazana, MD1, Jason Viereck, MD, PhD1, Kore K Liow, MD1,2
1Memory Disorders Center & Alzheimer’s Research Unit, Hawai'i Pacific Neuroscience, Honolulu, HI, 2John A. Burns School of Medicine, University of Hawai'i, Honolulu HI, 3University of Hawai'i at Mānoa, Honolulu HI, 4Creighton University, Omaha NE, 5University of Oregon, Eugene OR, 6JABSOM Biostatistics Core Facility, Department of Quantitative Health Sciences, University of Hawaii John A. Burns School of Medicine, Honolulu HI
Understanding barriers to Alzheimer’s Disease (AD) clinical trial participation in underrepresented Asian and Native Hawaiian (NH) patients diagnosed with AD or mild cognitive impairment (MCI) in a minority-majority population.
This retrospective study included 187 (134 AD, 53 MCI) patients with a Mini-Mental State (MMSE) score ≥14 seen at a Memory Disorders Center between 01/2022-06/2022. A 15-question telephone survey was given to patients and caregivers to assess demographics, barriers, and improvement methods. Descriptive statistics were performed using Wilcoxon rank-sum test for continuous variables and Fisher’s exact test for categorical variables. Incomplete surveys were included for analysis.
Forty-nine patients responded (29 AD, 20 MCI). The mean patient age was 77 years, 51% were male, and the mean MMSE score was 23.2. Compared to the clinic population (20.0% Asian, 30.7% NH, 39.7% White), 5.6% Asian, 22% NH, and 32% White patients were in an active trial. More NH and White patients participated in trials than Asian patients. The decision to participate in trials to help others significantly differed by race (91% White, 80% NH, 29% Asian; p=0.023), with other reasons being statistically insignificant. Asian (30%) and NH (80%) patients reported the main barrier to participation was a lack of information about trials, with psychosocial conflicts and financial burdens as the least important barrier. Additional trial information given to family members (64% Asian, 88% NH, 62% White) and patients (64% Asian, 88% NH, 46% White) were listed as the most popular trial improvements.
This study identified that Asian and NH patients were less likely to participate in AD trials compared to White patients. A deficiency in information was the primary barrier amongst minority patients. To overcome this barrier, increased outreach and education to patients and their families should be pursued.