Patients with Alzheimer’s disease (AD) face a number of challenges when deciding whether to enroll in a clinical trial. Their cognitive deficits can impair their ability to understand the risks and benefits of the trial, and to make an informed decision. This can lead to ethical challenges for their caregivers, who may be responsible for making the decision on their behalf.
To better understand how patients and their caregivers make decisions about clinical trial enrollment, the authors of this study interviewed caregivers of patients with AD who were recruited to enroll in a clinical trial. They found that caregivers of patients who enrolled were more likely to report that the patient wanted to be in the trial, and that the patient was involved in the decision-making process. Caregivers of patients who did not enroll were more likely to report that the patient did not want to be in the trial, and that there was disagreement between the patient and the caregiver about the decision.
The authors also found that caregivers of patients who enrolled were more likely to be younger, female, and college-educated. They were also more likely to be the patient’s adult child.
The authors conclude that more research is needed to understand how patients and their caregivers actually decide whether to enroll in a clinical trial. They suggest that future studies should focus on the following questions:
The authors also suggest that researchers and clinicians should develop better tools and resources to help caregivers make informed decisions about clinical trial enrollment on behalf of their loved ones.
Citation:
Karlawish, J. H. T., Casarett, D., Klocinski, J., & Sankar, P. (2001). How do AD patients and their caregivers decide whether to enroll in a clinical trial? Neurology, 56(6), 789–792. doi:10.1212/wnl.56.6.789
