Barriers to Alzheimer’s Disease (AD) Clinical Trial Participation in Racially Diverse Population of Hawaii

  • STATUS
    Recruiting
  • End date
    Oct 19, 2023
Updated on 22 August 2022
mini-mental state examination

Summary

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

Description

Objective: 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. Methods: 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. Results: 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. Conclusion: 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.

Details
Condition Alzheimer's Disease, Mild Cognitive Impairment, Asian and Native Hawaiian
Clinical Study IdentifierTX306091
Last Modified on22 August 2022

Eligibility

Yes No Not Sure

Inclusion Criteria

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

Exclusion Criteria

None
Clear my responses

How to participate?

Step 1 Connect with a study center
What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
  • Sign up as volunteer  to help accelerate the development of new treatments and to get notified about similar trials.

You are contacting

Investigator Avatar

Primary Contact

site

Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

Learn more

If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

Learn more

Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

Learn more

Similar trials to consider

Loading...

Browse trials for

Not finding what you're looking for?

Every year hundreds of thousands of volunteers step forward to participate in research. Sign up as a volunteer and receive email notifications when clinical trials are posted in the medical category of interest to you.

Sign up as volunteer

user name

Added by • 

 • 

Private

Reply by • Private
Loading...

Lorem ipsum dolor sit amet consectetur, adipisicing elit. Ipsa vel nobis alias. Quae eveniet velit voluptate quo doloribus maxime et dicta in sequi, corporis quod. Ea, dolor eius? Dolore, vel!

  The passcode will expire in None.
Loading...

No annotations made yet

Add a private note
  • abc Select a piece of text from the left.
  • Add notes visible only to you.
  • Send it to people through a passcode protected link.
Add a private note