Safety of Disclosing Amyloid Imaging Results to MCI and AD Patients

Taswell, Carl; Donohue, Cheryl L.; Mastwyk, Maree; Louey, Andrea; Giummarra, Jacqueline; Darby, David; Villemagne, Victor L.; Masters, Colin L.; Rowe, Christopher C.

doi:10.1016/j.jagp.2017.01.147

Cited by 8 publications

(29 citation statements)

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“…[21][22][23][24] Further, they are consistent with studies concluding that it is safe to disclose amyloid imaging results to adults with MCI and dementia. [25,26] Post-disclosure, participants who received an "elevated" result reported contemplating and making changes to health behaviors and future plans to a greater extent than participants who received a "not-elevated" results. Participants with elevated brain amyloid did not uniformly ascribe these changes to their amyloid PET scan result.…”

Section: Future Plansmentioning

confidence: 99%

“…[32,33] Future studies should examine the effects of biomarker disclosure on study partners or "pre-caregivers" asked to monitor the cognition, function, and well-being of individuals with preclinical AD. [25,34] Monitoring a cognitively unimpaired adult with elevated biomarkers is different work than being a caregiver for a person with dementia. Pre-caregivers' reactions to biomarker results will likely differ from caregivers' reactions because pre-caregivers are not performing the physical and emotional labor of caregiving, but instead, anticipating it.…”

Section: Future Plansmentioning

confidence: 99%

“…SOKRATES was a qualitative study and therefore did not measure quantitative psychometrics for comparisons of mood pre-and post-disclosure. [25] The A4 Study Team did gather psychological measures, which are reported elsewhere. [35] All SOKRATES participants underwent a standardized disclosure process; while that is a strength of the present study, we note that our findings may be contingent on the disclosure process.…”

Section: Limitationsmentioning

confidence: 99%

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Cognitively unimpaired adults’ reactions to disclosure of amyloid PET scan results

et al. 2020

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Importance Clinical guidelines currently recommend against amyloid imaging for cognitively unimpaired persons. The goal of Alzheimer's disease (AD) prevention, together with advances in understanding the pathophysiology of AD, however, has led to trials testing drugs in cognitively unimpaired persons who show evidence of AD biomarkers. Assuming the eventual success of such trials, millions of patients will be affected. There is a need to understand the effects of biomarker disclosure on those individuals. Design The Study of Knowledge and Reactions to Amyloid Testing (SOKRATES) involved 2 semistructured telephone interviews with individuals who received amyloid PET scan results as part of screening for research participation. Post-disclosure interviews were conducted at 4 to 12 weeks and again 1 year later. Data were collected from November 5, 2014 to November 30, 2016. Interviews were transcribed and coded in NVivo 12.0. Participants 80 adults aged 65 and older: 50 who received "elevated" and 30 who received "not-elevated" amyloid PET scan results. Main outcomes Interviews examined four domains: (1) comprehension of the amyloid PET scan result; (2) implications of the result for sense of self, memory, and future; (3) sharing of results with others; and (4) AD risk-reduction behaviors.

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Section: Future Plansmentioning

confidence: 99%

Section: Future Plansmentioning

confidence: 99%

Section: Limitationsmentioning

confidence: 99%

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Cognitively unimpaired adults’ reactions to disclosure of amyloid PET scan results

et al. 2020

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“…Five studies assessed the association between amyloid PET scan disclosure and depressive symptoms in persons with MCI (N = 2), MCI & ADRD (N = 1), and subjective cognitive decline (N = 2). [17][18][19][20]22 These studies assessed depressive symptoms at a wide range of time points following the scan. The shortest timepoint was 14 days and the longest timepoint was 52 weeks.…”

Section: Results Of Individual Studiesmentioning

confidence: 99%

Psychosocial and Behavioral Outcomes for Persons With Cognitive Impairment and Caregivers Following Amyloid-β PET Scan Disclosure

Couch

Ashford

Zhang

et al. 2023

Alzheimer Disease &Amp; Associated Disorders

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Background: Positron emission tomography (PET) scans for amyloid-β can aid in the early and accurate detection of Alzheimer disease. The results of amyloid PET scans could help people with cognitive impairment and caregivers better understand their diagnosis; however, there are concerns that they could also cause psychological harm. Methods: A systematic review of psychosocial and behavioral quantitative outcomes following the disclosure of an amyloid PET scan for persons living with cognitive impairment (subjective cognitive decline, mild cognitive impairment, Alzheimer’s Disease, and other dementias) and caregivers. Findings: Ten papers were identified from 7 studies. There was little evidence of an association between disclosure and depression. However, persons with mild cognitive impairment and their caregivers with elevated levels of amyloid had an increased risk of distress or anxiety compared with those without elevated amyloid. Participants correctly recalled the scan results; however, it is unclear whether this led to an increased understanding of their diagnosis. We did not identify any studies measuring behavioral outcomes. Conclusions: We found mixed evidence on the relationship between amyloid scans and psychosocial and behavioral outcomes in people with cognitive impairment and caregivers. These findings highlight the need for more methodologically rigorous research on this topic.

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“…The third and largest observational study of amyloid PET disclosure in symptomatic persons found that participants' scores on measures of mood did not significantly differ before and after amyloid PET result disclosure [10]. Similarly, a recent randomized controlled trial found no differences, over time, in depression or anxiety scores between (a) those who did and did not learn their brain amyloid status and (b) those who learned of being amyloid positive as compared to those who received negative scan results [11].…”

Section: Symptomatic Individualsmentioning

confidence: 97%

Ethical Considerations in Communicating Alzheimer's Disease Neuroimaging Biomarker Test Results to Symptomatic Individuals

2021

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This article examines ethical issues associated with the return of AD neuroimaging results to cognitively symptomatic individuals. Following a review of research on patient and study partner reactions to learning the results of biomarker testing for AD, we examine ethical issues that will be of increasing significance as the field transitions to an era wherein diseasemodifying treatments for AD become available. We first review the ethical justification for returning AD biomarker results to individuals who desire them. We then address a more novel question: whether, and to what extent, clinicians or clinical researchers should influence the decisions of individuals who are potentially reluctant to learn their AD imaging results. We argue that in many cases, it is ethically correct to explore, and sometimes alter, factors that may be inhibiting one's desire to know these test results. Our argument is grounded in the premise that having more complete information about changes that may be happening in one's brain will generally yield more informed participation in decisions about one's own care, thereby promoting autonomy. Finally, on the assumption that we have established that it is frequently ethically correct to try to communicate testing information, we examine considerations regarding (not whether but) how this is best accomplished, discussing the concept of responsible transparency. We suggest that both (1) explorations of why one may or may not want to learn results of AD biomarker imaging and (2) the responsible return of such test results is best accomplished using a transactional model of communication.

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Safety of Disclosing Amyloid Imaging Results to MCI and AD Patients

Cited by 8 publications

References 0 publications

Cognitively unimpaired adults’ reactions to disclosure of amyloid PET scan results

Cognitively unimpaired adults’ reactions to disclosure of amyloid PET scan results

Psychosocial and Behavioral Outcomes for Persons With Cognitive Impairment and Caregivers Following Amyloid-β PET Scan Disclosure

Ethical Considerations in Communicating Alzheimer's Disease Neuroimaging Biomarker Test Results to Symptomatic Individuals

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