Amyloid positron emission tomography candidates may focus more on benefits than risks of results disclosure

Abstract

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 one's mild cognitive impairment etiology and prognosis to plan ahead, and (2) learning one's brain amyloid status for knowledge's sake, regardless of whether the information is actionable. Most participants demonstrated an adequate understanding of the scan's limitations, yet instances of characterizing amyloid PET as a definitive test for Alzheimer's 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.

How Accurately Do Patients and Their Care Partners Report Results of Amyloid-β PET Scans for Alzheimer’s Disease Assessment?

“…These quantitative and qualitative findings are consistent with the literature that shows those with MCI-those with less severe cognitive impairment and those with higher TICS-M scores on average-are not going to receive as definitive prog-noses or diagnoses as compared to those with dementia and thus may have a harder time accurately reporting results [10,12]. Importantly, both patients with MCI and their care partners were less accurate in their scan results reporting compared to dyads where the patient had dementia.…”

“…The nuances of etiology and prognosis of cognitive impairment, especially for MCI patients, present unique communication challenges for providers. Recommendations for how providers communicate amyloid-β PET scan results to MCI patients include setting appropriate expectations especially ensuring patients and care partners understand the limitations of amyloid-β imaging [10]. Additionally, these recommendations include being specific with MCI patients and their care partners that a negative scan result does not remove the elevated risk for dementia, and a positive result is also not definitive but should elicit further monitoring and conversations about advanced care planning.…”

“…There is limited research on how accurately cognitively impaired patients and their care partners understand amyloid PET scan results. One study of 30 MCI patients and their care partners found that most understood the results and limitations of results, but 20% still equated elevated amyloid as a definitive marker of AD [10]. Amyloid-β PET scans provide information on risk of continued cognitive and functional decline and can aid in future care planning.…”

A randomized controlled trial of amyloid positron emission tomography results disclosure in mild cognitive impairment

“…Eligible participants and their family caregivers were allocated as dyads in a 1:1 ratio to a scan group or comparison group (Figure 1). Details of the study design and protocols for MCI education (comparison group) and pre‐testing counseling (scan group), amyloid positron emission tomography (PET) results disclosure, and adverse event monitoring have been previously described 4‐6 . Briefly, we included patients with all MCI subtypes and excluded those with active untreated mood disorders.…”

Clinician‐patient communication during the diagnostic workup: The ABIDE project

“…Early detection of disease and at‐risk individuals is crucial for future targeted prevention of dementia [4,5]. Yet, early diagnosis may have drawbacks for the individual, such as social stigmatization or psychological distress [6–8], especially because no adequate treatment is (yet) available. Still, a timely diagnosis could benefit patients and their caregivers, by enabling them to be more actively engaged in their health/disease management and prepare for the future [7,9].…”