Research Attitude and Interest among Cancer Survivors with or without Cognitive Impairment

Abstract

Background: We examined the research attitudes and willingness to participate in clinical research among cancer survivors with varying degrees of cognitive function. Methods: This is a secondary analysis of data collected through the University of California Irvine Consent-to-Contact registry. Cancer survivors completed the Cognitive Function Instrument (CFI), the Research Attitudes Questionnaire (RAQ), and willingness to participate (WTP) in certain research procedures. Perceived cognitive impairment (CI) was defined as the worst 20% CFI scores. Results: Here, 265 CI and 909 cognitively non-impaired (CNI) participants’ data were analyzed. Mean age and sex distribution were similar, with fewer non-Hispanic Whites and education years among CI participants. More CI participants self-reported past diagnoses of Alzheimer’s disease, mild cognitive impairment, stroke, depression, post-traumatic stress disorder, and alcohol abuse (all p < 0.05). CI participants were significantly more interested in studies investigating approved medications (92% vs. 87%, p = 0.030), lumbar puncture (47% vs. 38%, p = 0.027), and autopsy (78% vs. 69%, p = 0.022). After removing survivors with co-existing neuropsychiatric conditions, interest in autopsy studies remained statistically higher among CI (79% vs. 69%, p = 0.022). Conclusions: Participants with cancer and CI are open to research procedures and interventions that are traditionally less utilized, which may facilitate the discovery of the pathogenesis and interventions for cancer-related cognitive impairment (CRCI).

Comparing research attitudes in Down syndrome and non‐Down syndrome research decision‐makers

“…RAQ scores have been previously shown to be associated with willingness to participate in research, compliance with study protocols, and study completion. 9 , 10 , 11 , 12 In a previous study, we showed the feasibility of using the RAQ in over 1000 family members for individuals with DS, 13 but we still do not understand how individual items on the RAQ compare to those in the general population. In the present report, we explored differences in RAQ scores between healthcare and research enrollment decision‐makers for individuals with DS and those from a more general population, both of which come from research‐friendly registries in the United States.…”