Communicating 5-Year Risk of Alzheimer's Disease Dementia: Development and Evaluation of Materials that Incorporate Multiple Genetic and Biomarker Research Results.
Alzheimer’s disease dementia
biomarkers
cognitively normal older adults
genetics
health communication
imaging
pre-symptomatic
research ethics
return of research results
risk
Journal
Journal of Alzheimer's disease : JAD
ISSN: 1875-8908
Titre abrégé: J Alzheimers Dis
Pays: Netherlands
ID NLM: 9814863
Informations de publication
Date de publication:
2021
2021
Historique:
pubmed:
19
12
2020
medline:
16
9
2021
entrez:
18
12
2020
Statut:
ppublish
Résumé
Cognitively normal (CN) older adults participating in Alzheimer's disease (AD) research increasingly ask for their research results-including genetic and neuroimaging findings-to understand their risk of developing AD dementia. AD research results are typically not returned for multiple reasons, including possible psychosocial harms of knowing one is at risk of a highly feared and untreatable disease. We developed materials that convey information about 5-year absolute risk of developing AD dementia based on research results. 20 CN older adults who received a research brain MRI result were interviewed regarding their wishes for research results to inform material development (Pilot 1). Following material development, 17 CN older adults evaluated the materials for clarity and acceptability (Pilot 2). All participants were community-dwelling older adults participating in longitudinal studies of aging at a single site. Participants want information on their risk of developing AD dementia to better understand their own health, satisfy curiosity, inform family, and future planning. Some articulated concerns, but the majority wanted to know their risk despite the limitations of information. Participants found the educational materials and results report clear and acceptable, and the majority would want to know their research results after reviewing them. These materials will be used in a clinical study examining the psychosocial and cognitive effects of offering research results to a cohort of CN older adults. Future AD research may incorporate the return of complex risk information to CN older adults, and materials are needed to communicate this information.
Sections du résumé
BACKGROUND
Cognitively normal (CN) older adults participating in Alzheimer's disease (AD) research increasingly ask for their research results-including genetic and neuroimaging findings-to understand their risk of developing AD dementia. AD research results are typically not returned for multiple reasons, including possible psychosocial harms of knowing one is at risk of a highly feared and untreatable disease.
OBJECTIVE
We developed materials that convey information about 5-year absolute risk of developing AD dementia based on research results.
METHODS
20 CN older adults who received a research brain MRI result were interviewed regarding their wishes for research results to inform material development (Pilot 1). Following material development, 17 CN older adults evaluated the materials for clarity and acceptability (Pilot 2). All participants were community-dwelling older adults participating in longitudinal studies of aging at a single site.
RESULTS
Participants want information on their risk of developing AD dementia to better understand their own health, satisfy curiosity, inform family, and future planning. Some articulated concerns, but the majority wanted to know their risk despite the limitations of information. Participants found the educational materials and results report clear and acceptable, and the majority would want to know their research results after reviewing them.
CONCLUSION
These materials will be used in a clinical study examining the psychosocial and cognitive effects of offering research results to a cohort of CN older adults. Future AD research may incorporate the return of complex risk information to CN older adults, and materials are needed to communicate this information.
Identifiants
pubmed: 33337371
pii: JAD200993
doi: 10.3233/JAD-200993
pmc: PMC7877232
mid: NIHMS1659798
doi:
Substances chimiques
Biomarkers
0
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Langues
eng
Sous-ensembles de citation
IM
Pagination
559-572Subventions
Organisme : NIA NIH HHS
ID : P30 AG066444
Pays : United States
Organisme : NIAAA NIH HHS
ID : R01 AA029308
Pays : United States
Organisme : NCATS NIH HHS
ID : UL1 TR002345
Pays : United States
Organisme : NIA NIH HHS
ID : P01 AG003991
Pays : United States
Organisme : NIA NIH HHS
ID : P50 AG005681
Pays : United States
Organisme : NIA NIH HHS
ID : P01 AG026276
Pays : United States
Organisme : NIA NIH HHS
ID : R01 AG065234
Pays : United States
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