ArticleNeuroethics2017
Amnestic MCI Patients' Perspectives toward Disclosure of Amyloid PET Results in a Research Context.
Article in Neuroethics, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 2 of them syntheses that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
16 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Updated Appropriate Use Criteria for Amyloid and Tau PET: A Report from the Alzheimer's Association and Society for Nuclear Medicine and Molecular Imaging Workgroup.Journal of nuclear medicine : official publication, Society of Nuclear Medicine · 2025Pooled it
- Updated appropriate use criteria for amyloid and tau PET: A report from the Alzheimer's Association and Society for Nuclear Medicine and Molecular Imaging Workgroup.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Pooled it
- Value of Knowing: Health-Related Behavior Changes following Amyloid PET Results Disclosure in Mild Cognitive Impairment.The journal of prevention of Alzheimer's disease · 2024Trial
- Just Semantics? How Diagnostic Criteria Influence Physician-Patient Narratives in Alzheimer's Disease.Neuro-degenerative diseases · 2026Article
- The utility of recruitment incentives in early Alzheimer's disease trials.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024Article
- Informing Alzheimer's Biomarker Communication: Concerns and Understanding of Cognitively Unimpaired Adults During Amyloid Results Disclosure.The journal of prevention of Alzheimer's disease · 2024Article
- Alzheimer's Disease Biomarker Decision-Making among Patients with Mild Cognitive Impairment and Their Care Partners.The journal of prevention of Alzheimer's disease · 2024Article
- Towards a future where Alzheimer's disease pathology is stopped before the onset of dementia.Nature aging · 2023Review
- What Influences the Willingness of Blacks and African Americans to Enroll in Preclinical Alzheimer's Disease Biomarker Research? A Qualitative Vignette Analysis.Journal of Alzheimer's disease : JAD · 2022Article
- [Early detection of Alzheimer's disease and dementia prediction in patients with mild cognitive impairment : Summary of current recommendations].Der Nervenarzt · 2020Review
- A Preliminary Study of Clinical Trial Enrollment Decisions Among People With Mild Cognitive Impairment and Their Study Partners.The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry · 2019Article
- Stakeholders' Views on Early Diagnosis for Alzheimer's Disease, Clinical Trial Participation and Amyloid PET Disclosure: A Focus Group Study.Journal of bioethical inquiry · 2019Article
- From information to follow-up: Ethical recommendations to facilitate the disclosure of amyloid PET scan results in a research setting.Alzheimer's & dementia (New York, N. Y.) · 2018Review
- Amyloid positron emission tomography candidates may focus more on benefits than risks of results disclosure.Alzheimer's & dementia (Amsterdam, Netherlands) · 2018Article
- Amnestic MCI patients' experiences after disclosure of their amyloid PET result in a research context.Alzheimer's research & therapy · 2017Article
- Caregivers' attitudes toward blood-based biomarker testing for Alzheimer's disease.Alzheimer's & dementia (Amsterdam, Netherlands)Article
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundResearchers currently are not obligated to share individual research results (IRR) with participants. This non-disclosure policy has been challenged on the basis of participants' rights to be aware and in control of their personal medical information. Here, we determined how patients view disclosure of research PET results of brain amyloid and why they believe it is advantageous or disadvantageous to disclose.
methodAs a part of a larger diagnostic trial, we conducted semi-structured interviews with patients with amnestic Mild Cognitive Impairment (aMCI). Participants had the option to receive their brain amyloid PET scan result (i.e., their IRR). Interviews were conducted before they received their IRR.
resultsA total of 38 aMCI patients (100% of study participants) wanted to know their IRR. The two most frequently mentioned reasons for choosing IRR disclosure were to better understand their brain health status and to be better able to make informed decisions about future personal arrangements (e.g., inheritance tax, moving into a smaller house, end-of-life decisions, etc.). Emotional risk was mentioned as the primary disadvantage of knowing one's IRR. On the other hand, non-disclosure was considered to be emotionally difficult also, as patients would be uncertain about their future health condition.
conclusionsMany patients diagnosed clinically with aMCI want to know their brain amyloid test results, even though this knowledge may be disadvantageous to them. Knowing what is going on with their health and the ability to make informed decisions about their future were the two principal advantages mentioned for obtaining their amyloid PET results. Because of the overwhelming consensus of aMCI patients was to disclose their brain amyloid PET scan results, researchers should strongly consider releasing this information to research subjects.
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