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Disclosure of amyloid positron emission tomography results to individuals without dementia: a systematic review

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      Abstract

      Background

      Disclosure of amyloid positron emission tomography (PET) results to individuals without dementia has become standard practice in secondary prevention trials and also increasingly occurs in clinical practice. However, this is controversial given the current lack of understanding of the predictive value of a PET result at the individual level and absence of disease-modifying treatments. In this study, we systematically reviewed the literature on the disclosure of amyloid PET in cognitively normal (CN) individuals and patients with mild cognitive impairment (MCI) in both research and clinical settings.

      Methods

      We performed a systematic literature search of four scientific databases. Two independent reviewers screened the identified records and selected relevant articles. Included articles presented either empirical data or theoretical data (i.e. arguments in favor or against amyloid status disclosure). Results from the theoretical data were aggregated and presented per theme.

      Results

      Of the seventeen included studies, eleven reported empirical data and six provided theoretical arguments. There was a large variation in the design of the empirical studies, which were almost exclusively in the context of cognitively normal trial participants, comprising only two prospective cohort studies quantitatively assessing the psychological impact of PET result disclosure which showed a low risk of psychological harm after disclosure. Four studies showed that both professionals and cognitively normal individuals support amyloid PET result disclosure and underlined the need for clear disclosure protocols. From the articles presenting theoretical data, we identified 51 ‘pro’ and ‘contra’ arguments. Theoretical arguments in favor or against disclosure were quite consistent across population groups and settings. Arguments against disclosure focused on the principle of non-maleficence, whereas its psychological impact and predictive value is unknown. Important arguments in favor of amyloid disclosure are the patients right to know (patient autonomy) and that it enables early future decision making.

      Discussion

      Before amyloid PET result disclosure in individuals without dementia in a research or clinical setting is ready for widespread application, more research is needed about its psychological impact, and its predictive value at an individual level. Finally, communication materials and strategies to support disclosure of amyloid PET results should be further developed and prospectively evaluated.

      Electronic supplementary material

      The online version of this article (10.1186/s13195-018-0398-3) contains supplementary material, which is available to authorized users.

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      Most cited references 45

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      The amyloid hypothesis of Alzheimer's disease: progress and problems on the road to therapeutics.

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      It has been more than 10 years since it was first proposed that the neurodegeneration in Alzheimer's disease (AD) may be caused by deposition of amyloid beta-peptide (Abeta) in plaques in brain tissue. According to the amyloid hypothesis, accumulation of Abeta in the brain is the primary influence driving AD pathogenesis. The rest of the disease process, including formation of neurofibrillary tangles containing tau protein, is proposed to result from an imbalance between Abeta production and Abeta clearance.
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        The diagnosis of dementia due to Alzheimer's disease: recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease.

        The National Institute on Aging and the Alzheimer's Association charged a workgroup with the task of revising the 1984 criteria for Alzheimer's disease (AD) dementia. The workgroup sought to ensure that the revised criteria would be flexible enough to be used by both general healthcare providers without access to neuropsychological testing, advanced imaging, and cerebrospinal fluid measures, and specialized investigators involved in research or in clinical trial studies who would have these tools available. We present criteria for all-cause dementia and for AD dementia. We retained the general framework of probable AD dementia from the 1984 criteria. On the basis of the past 27 years of experience, we made several changes in the clinical criteria for the diagnosis. We also retained the term possible AD dementia, but redefined it in a manner more focused than before. Biomarker evidence was also integrated into the diagnostic formulations for probable and possible AD dementia for use in research settings. The core clinical criteria for AD dementia will continue to be the cornerstone of the diagnosis in clinical practice, but biomarker evidence is expected to enhance the pathophysiological specificity of the diagnosis of AD dementia. Much work lies ahead for validating the biomarker diagnosis of AD dementia. Copyright © 2011. Published by Elsevier Inc.
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          Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement.

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            Author and article information

            Affiliations
            [1 ]ISNI 0000 0004 0435 165X, GRID grid.16872.3a, Department of Neurology & Alzheimer Center, Amsterdam Neuroscience, , VU University Medical Center, ; Amsterdam, The Netherlands
            [2 ]ISNI 0000 0004 1754 9227, GRID grid.12380.38, Medical Library, , Vrije Universiteit Amsterdam, ; Amsterdam, the Netherlands
            [3 ]GRID grid.476553.6, Piramal Imaging GmbH, ; Berlin, Germany
            [4 ]ISNI 0000 0004 0435 165X, GRID grid.16872.3a, Department of Radiology & Nuclear Medicine, Amsterdam Neuroscience, , VU University Medical Center, ; Amsterdam, the Netherlands
            [5 ]ISNI 0000000121901201, GRID grid.83440.3b, Institutes of Neurology and Healthcare Engineering, , UCL, ; London, UK
            [6 ]ISNI 0000 0004 0435 165X, GRID grid.16872.3a, Department of Epidemiology & Biostatistics, , VU University Medical Center, ; Amsterdam, the Netherlands
            Contributors
            ORCID: http://orcid.org/0000-0002-3510-5510, +31 20 4440823 , a.dewilde@vumc.nl
            m.vanbuchem@vumc.nl
            r.otten@vu.nl
            femke.bouwman@vumc.nl
            andrew.stephens@piramal.com
            f.barkhof@vumc.nl
            p.scheltens@vumc.nl
            wm.vdflier@vumc.nl
            Journal
            Alzheimers Res Ther
            Alzheimers Res Ther
            Alzheimer's Research & Therapy
            BioMed Central (London )
            1758-9193
            28 July 2018
            28 July 2018
            2018
            : 10
            30055660 6064628 398 10.1186/s13195-018-0398-3
            © The Author(s). 2018

            Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

            Funding
            Funded by: Stichting LSH-TKI
            Award ID: LSHM16025
            Award Recipient :
            Funded by: FundRef http://dx.doi.org/10.13039/501100001826, ZonMw;
            Award ID: 733050201
            Award Recipient :
            Categories
            Review
            Custom metadata
            © The Author(s) 2018

            Neurology

            disclosure, amyloid pet, non-demented, psychological impact

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