Cargando…
Perspectives on Communicating Biomarker-Based Assessments of Alzheimer’s Disease to Cognitively Healthy Individuals(2)
In clinical trials which target pathophysiological mechanisms associated with Alzheimer’s disease, research participants who are recruited based on biomarker test results should be informed about their increased risk of developing Alzheimer’s dementia. This paper presents the results of a qualitativ...
Autores principales: | , , , , , , , , , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
IOS Press
2018
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5836405/ https://www.ncbi.nlm.nih.gov/pubmed/29480179 http://dx.doi.org/10.3233/JAD-170813 |
_version_ | 1783303959443668992 |
---|---|
author | Milne, Richard Bunnik, Eline Diaz, Ana Richard, Edo Badger, Shirlene Gove, Dianne Georges, Jean Fauria, Karine Molinuevo, Jose-Luis Wells, Katie Ritchie, Craig Brayne, Carol |
author_facet | Milne, Richard Bunnik, Eline Diaz, Ana Richard, Edo Badger, Shirlene Gove, Dianne Georges, Jean Fauria, Karine Molinuevo, Jose-Luis Wells, Katie Ritchie, Craig Brayne, Carol |
author_sort | Milne, Richard |
collection | PubMed |
description | In clinical trials which target pathophysiological mechanisms associated with Alzheimer’s disease, research participants who are recruited based on biomarker test results should be informed about their increased risk of developing Alzheimer’s dementia. This paper presents the results of a qualitative focus group study of attitudes and concerns toward learning information about biomarker-based risk status among healthy research participants in the United Kingdom and Spain and people with dementia and their supporters/caregivers from countries represented in the European Working Group of People with Dementia of Alzheimer Europe. The study identified expectations related to learning risk status and preferences related to the content, quality, and follow-up of the disclosure process. The latter emphasize distinctions between risk and diagnoses, the importance of clear information about risk, and suggestions for risk reduction, as well as expectations for follow up and support. The implications of these preferences for practice are discussed. Providing details of research participants’ experience and views may serve as a guide for the development of processes for the responsible disclosure of Alzheimer’s disease biomarkers. |
format | Online Article Text |
id | pubmed-5836405 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2018 |
publisher | IOS Press |
record_format | MEDLINE/PubMed |
spelling | pubmed-58364052018-03-07 Perspectives on Communicating Biomarker-Based Assessments of Alzheimer’s Disease to Cognitively Healthy Individuals(2) Milne, Richard Bunnik, Eline Diaz, Ana Richard, Edo Badger, Shirlene Gove, Dianne Georges, Jean Fauria, Karine Molinuevo, Jose-Luis Wells, Katie Ritchie, Craig Brayne, Carol J Alzheimers Dis Ethics Review In clinical trials which target pathophysiological mechanisms associated with Alzheimer’s disease, research participants who are recruited based on biomarker test results should be informed about their increased risk of developing Alzheimer’s dementia. This paper presents the results of a qualitative focus group study of attitudes and concerns toward learning information about biomarker-based risk status among healthy research participants in the United Kingdom and Spain and people with dementia and their supporters/caregivers from countries represented in the European Working Group of People with Dementia of Alzheimer Europe. The study identified expectations related to learning risk status and preferences related to the content, quality, and follow-up of the disclosure process. The latter emphasize distinctions between risk and diagnoses, the importance of clear information about risk, and suggestions for risk reduction, as well as expectations for follow up and support. The implications of these preferences for practice are discussed. Providing details of research participants’ experience and views may serve as a guide for the development of processes for the responsible disclosure of Alzheimer’s disease biomarkers. IOS Press 2018-02-20 /pmc/articles/PMC5836405/ /pubmed/29480179 http://dx.doi.org/10.3233/JAD-170813 Text en © 2018 – IOS Press and the authors. All rights reserved https://creativecommons.org/licenses/by-nc/4.0/ This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial (CC BY-NC 4.0) License (https://creativecommons.org/licenses/by-nc/4.0/) , which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited. |
spellingShingle | Ethics Review Milne, Richard Bunnik, Eline Diaz, Ana Richard, Edo Badger, Shirlene Gove, Dianne Georges, Jean Fauria, Karine Molinuevo, Jose-Luis Wells, Katie Ritchie, Craig Brayne, Carol Perspectives on Communicating Biomarker-Based Assessments of Alzheimer’s Disease to Cognitively Healthy Individuals(2) |
title | Perspectives on Communicating Biomarker-Based Assessments of Alzheimer’s Disease to Cognitively Healthy Individuals(2) |
title_full | Perspectives on Communicating Biomarker-Based Assessments of Alzheimer’s Disease to Cognitively Healthy Individuals(2) |
title_fullStr | Perspectives on Communicating Biomarker-Based Assessments of Alzheimer’s Disease to Cognitively Healthy Individuals(2) |
title_full_unstemmed | Perspectives on Communicating Biomarker-Based Assessments of Alzheimer’s Disease to Cognitively Healthy Individuals(2) |
title_short | Perspectives on Communicating Biomarker-Based Assessments of Alzheimer’s Disease to Cognitively Healthy Individuals(2) |
title_sort | perspectives on communicating biomarker-based assessments of alzheimer’s disease to cognitively healthy individuals(2) |
topic | Ethics Review |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5836405/ https://www.ncbi.nlm.nih.gov/pubmed/29480179 http://dx.doi.org/10.3233/JAD-170813 |
work_keys_str_mv | AT milnerichard perspectivesoncommunicatingbiomarkerbasedassessmentsofalzheimersdiseasetocognitivelyhealthyindividuals2 AT bunnikeline perspectivesoncommunicatingbiomarkerbasedassessmentsofalzheimersdiseasetocognitivelyhealthyindividuals2 AT diazana perspectivesoncommunicatingbiomarkerbasedassessmentsofalzheimersdiseasetocognitivelyhealthyindividuals2 AT richardedo perspectivesoncommunicatingbiomarkerbasedassessmentsofalzheimersdiseasetocognitivelyhealthyindividuals2 AT badgershirlene perspectivesoncommunicatingbiomarkerbasedassessmentsofalzheimersdiseasetocognitivelyhealthyindividuals2 AT govedianne perspectivesoncommunicatingbiomarkerbasedassessmentsofalzheimersdiseasetocognitivelyhealthyindividuals2 AT georgesjean perspectivesoncommunicatingbiomarkerbasedassessmentsofalzheimersdiseasetocognitivelyhealthyindividuals2 AT fauriakarine perspectivesoncommunicatingbiomarkerbasedassessmentsofalzheimersdiseasetocognitivelyhealthyindividuals2 AT molinuevojoseluis perspectivesoncommunicatingbiomarkerbasedassessmentsofalzheimersdiseasetocognitivelyhealthyindividuals2 AT wellskatie perspectivesoncommunicatingbiomarkerbasedassessmentsofalzheimersdiseasetocognitivelyhealthyindividuals2 AT ritchiecraig perspectivesoncommunicatingbiomarkerbasedassessmentsofalzheimersdiseasetocognitivelyhealthyindividuals2 AT braynecarol perspectivesoncommunicatingbiomarkerbasedassessmentsofalzheimersdiseasetocognitivelyhealthyindividuals2 |