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

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      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.


      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.


      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.


      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.

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      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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          Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement.


            Author and article information

            [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
            ORCID:, +31 20 4440823 ,
            Alzheimers Res Ther
            Alzheimers Res Ther
            Alzheimer's Research & Therapy
            BioMed Central (London )
            28 July 2018
            28 July 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 (, 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 ( applies to the data made available in this article, unless otherwise stated.

            Funded by: Stichting LSH-TKI
            Award ID: LSHM16025
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            Funded by: FundRef, ZonMw;
            Award ID: 733050201
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            © The Author(s) 2018


            disclosure, amyloid pet, non-demented, psychological impact


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