UC Davis

Introduction

Given mounting calls to disclose biomarker test results to research participants, we explored factors underlying decisions by patients with mild cognitive impairment to receive amyloid imaging results.

Methods

Prospective, qualitative interviews were conducted with 59 participants (30 = mild cognitive impairment patients, 29 = care partners) from the scan arm of a randomized controlled trial on the effects of amyloid PET results disclosure in an Alzheimer Disease Research Center setting.

Results

Sixty-three percent of the participants were female, with an average age of 72.9 years, and most had greater than a high school level of education (80%). Primary motivations included: (1) better understanding ones mild cognitive impairment etiology and prognosis to plan ahead, and (2) learning ones brain amyloid status for knowledges sake, regardless of whether the information is actionable. Most participants demonstrated an adequate understanding of the scans limitations, yet instances of characterizing amyloid PET as a definitive test for Alzheimers disease occurred. Mention of potential drawbacks, such as negative psychological outcomes, was minimal, even among care partners.

Discussion

Findings demonstrate a risk of disproportionate focus on possible benefits of testing among amyloid scan candidates and suggest a need to clearly emphasize the limitations of amyloid PET when counseling cognitively impaired patients and their families before testing. Future research should examine whether minimizing drawbacks at the pre-imaging stage has adverse consequences on results disclosure.