eprintid: 10054704 rev_number: 20 eprint_status: archive userid: 608 dir: disk0/10/05/47/04 datestamp: 2018-08-23 13:23:30 lastmod: 2021-09-17 22:58:52 status_changed: 2018-08-23 13:23:30 type: article metadata_visibility: show creators_name: de Wilde, A creators_name: van Buchem, MM creators_name: Otten, RHJ creators_name: Bouwman, F creators_name: Stephens, A creators_name: Barkhof, F creators_name: Scheltens, P creators_name: van der Flier, WM title: Disclosure of amyloid positron emission tomography results to individuals without dementia: a systematic review ispublished: pub divisions: UCL divisions: B02 divisions: C07 divisions: D07 divisions: F82 keywords: Science & Technology, Life Sciences & Biomedicine, Clinical Neurology, Neurosciences, Neurosciences & Neurology, Amyloid PET, Disclosure, Non-demented, Psychological impact, PRECLINICAL ALZHEIMERS-DISEASE, COGNITIVELY NORMAL INDIVIDUALS, NORMAL OLDER-ADULTS, ASSOCIATION WORKGROUPS, DIAGNOSTIC GUIDELINES, NATIONAL INSTITUTE, BETA PLAQUES, PET, RECOMMENDATIONS, CRITERIA note: © The Author(s). 2018 Open Access This 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. 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. date: 2018-07-28 date_type: published publisher: BMC official_url: http://dx.doi.org/10.1186/s13195-018-0398-3 oa_status: green full_text_type: pub language: eng primo: open primo_central: open_green article_type_text: Review verified: verified_manual elements_id: 1574765 doi: 10.1186/s13195-018-0398-3 lyricists_name: Barkhof, Frederik lyricists_id: FBARK32 actors_name: Sharp, Catherine actors_id: CLSHA04 actors_role: owner full_text_status: public publication: Alzheimer's Research & Therapy volume: 10 article_number: 72 pages: 12 issn: 1758-9193 citation: de Wilde, A; van Buchem, MM; Otten, RHJ; Bouwman, F; Stephens, A; Barkhof, F; Scheltens, P; de Wilde, A; van Buchem, MM; Otten, RHJ; Bouwman, F; Stephens, A; Barkhof, F; Scheltens, P; van der Flier, WM; - view fewer <#> (2018) Disclosure of amyloid positron emission tomography results to individuals without dementia: a systematic review. Alzheimer's Research & Therapy , 10 , Article 72. 10.1186/s13195-018-0398-3 <https://doi.org/10.1186/s13195-018-0398-3>. Green open access document_url: https://discovery.ucl.ac.uk/id/eprint/10054704/1/s13195-018-0398-3.pdf