Pre mortem tests of Alzheimer's disease (AD) pathology are increasingly popular in research on cognitive aging and AD. Due to concerns that information from such tests may be misunderstood, psychologically harmful, and of unclear clinical significance, results of pre mortem tests of AD pathology have typically been withheld from research participants. However, as the reliability and potential clinical significance of test like brain amyloid imaging have become clear, there is a pressing need to revisit the practice of unilaterally withholding such information from research participants and identify responsible approaches to communicating individual results. Amyloid imaging results may be particularly relevant to mild cognitive impairment (MCI), a population for whom a growing body of evidence suggests that such testing may provide valuable prognostic and planning information, despite the unavailability of interventions to alter one's clinical course. Our preliminary work suggests that research participants with MCI and their family members are receptive to and capable of understanding information about the purpose, results, and implications of amyloid imaging when presented using a standardized approach developed by our interdisciplinary team. Building on this work, the proposed study, led by an early stage investigator in response to PA-11-180, will follow a well characterized sample of at least 40 MCI care dyads (patient + family member) who are, and a matched comparison group of dyads who are not, presented with the option of receiving the patient's amyloid imaging research results. Aim 1 will test hypotheses that examine how receiving amyloid imaging research results will impact understanding of, and perceived self-efficacy for coping with, MCI among both patients and care partners. Aim 2 will use a series of qualitative interviews and content analysis to identify the information and support needs of MCI care dyads who are offered amyloid imaging research results. A third, exploratory aim will document, within the subgroup of MCI care dyads who receive amyloid imaging research results, the frequency, nature, and range of psychological and behavioral responses to receiving such results. In addition to having implications for research conduct, our findings may also inform clinical practice as clinicians begin to incorporate amyloid imaging into clinical evaluation and respond to patient requests for such imaging.
NIH ExPorter
NIH ExPorter