Evidence map›Paper›PMID 34252201›Full record

ArticleJournal of the American Geriatrics Society2021

Family members' perspectives on learning cognitively unimpaired older adults' amyloid-β PET scan results.

Emily A Largent, Maramawit Abera, Kristin Harkins, Sara J Feldman, Wendy R Uhlmann, J Scott Roberts, Jason Karlawish, REVEAL-SCAN Team

Open access · bronzeAbstract read
In one paragraph

Article in Journal of the American Geriatrics Society, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.

0numbers the graph read from it
0cells of the map it votes in
17citing papers in PubMed
2.7field-weighted citation impact, top 9% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

17 citing papers in PubMed, 22 citations in OpenAlex.

  1. Trial
  2. Article
  3. Modernizing diagnosis of Alzheimer's disease: A review of global trends and Asia-specific perspectives.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025
    Review
  4. Article
  5. Counseling and disclosure practices in predictive Alzheimer's disease diagnostics: A scoping review.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024
    Article
  6. Review
  7. Biomarker disclosure protocols in prodromal Alzheimer's disease clinical trials.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2023
    Review
  8. Anti-Amyloid Immunotherapies for Alzheimer's Disease: A 2023 Clinical Update.Neurotherapeutics : the journal of the American Society for Experimental NeuroTherapeutics · 2023
    Review
  9. The Views of Patients with Isolated Rapid Eye Movement Sleep Behavior Disorder on Risk Disclosure.Movement disorders : official journal of the Movement Disorder Society · 2023
    Article
  10. Article
  11. Article
  12. Article
  13. Moving beyond disclosure: Stages of care in preclinical Alzheimer's disease biomarker testing.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2022
    Article
  14. Article
  15. Article
  16. Article
  17. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors at 3 institutions in 1 country.

Emily A LargentDepartment of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.ORCID 0000-0002-7536-5077
Maramawit AberaDepartment of Medicine, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.
Kristin HarkinsDepartment of Medicine, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.
Sara J FeldmanDepartment of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, Michigan, USA.
Wendy R UhlmannDepartment of Internal Medicine, Division of Genetic Medicine, University of Michigan School of Medicine, Ann Arbor, Michigan, USA.
J Scott RobertsDepartment of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, Michigan, USA.
Jason KarlawishDepartment of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.
REVEAL-SCAN Team
University of Pennsylvania · USMichigan Department of Health and Human Services · USUniversity of Michigan · US

Funding

UPenn ADCC Biomarker CoreP30AG010124 · NIA · UNIVERSITY OF PENNSYLVANIA · PI DETRE, JOHN A · 1991 to 2020
$35.1M
Research Education ComponentP30AG072931 · NIA · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI DOUGLAS C NOLL · 2021 to 2026
$26.5M
Research Education ComponentP30AG072979 · NIA · UNIVERSITY OF PENNSYLVANIA · PI DAVID A WOLK · 2021 to 2026
$24.8M
Michigan Alzheimer's Disease Core CenterP30AG053760 · NIA · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI ALBIN, ROGER L · 2016 to 2020
$10.1M
Impact of Disclosing Amyloid Imaging Results to Cognitively Normal IndividualsRF1AG047866 · NIA · BRIGHAM AND WOMEN'S HOSPITAL · PI GREEN, ROBERT C., KARLAWISH, JASON H · 2015 to 2019
$6.0M
University of Michigan Training Program in ELSI ResearchT32HG010030 · NHGRI · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI ROBERTS, SCOTT · 2018 to 2022
$962k
UNDERSTANDING HOW THE STUDY PARTNER REQUIREMENT IMPACTS THE DISCOVERY AND TRANSLATION OF PRECLINICAL ALZHEIMERS DISEASEK01AG064123 · NIA · UNIVERSITY OF PENNSYLVANIA · PI LARGENT, EMILY · 2019 to 2023
$637k
NHGRI NIH HHS T32 HG010030NIA NIH HHS 1RF1-AG-047866NIA NIH HHS K01 AG064123NIA NIH HHS K01-AG064123NIA NIH HHS P30 AG010124NIA NIH HHS P30-AG-010124NIA NIH HHS P30 AG053760NIA NIH HHS P30-AG-053760NIA NIH HHS P30 AG072931NIA NIH HHS P30 AG072979NIA NIH HHS RF1 AG047866NIA NIH HHS RF1AG047866-01A1S3
6 · The paper itself

Abstract

BACKGROUND/

objectivesDisclosure of Alzheimer's disease (AD) risk information to cognitively unimpaired older adults may become more common if preclinical AD is shown to be identifiable and amenable to treatment. Little, however, is known about how families will react to this information. DESIGN AND

settingSemi-structured telephonic interviews.

participantsSeventy study partners (mean age = 68 [±11]; 50% female; 70% spouses/significant others; 18% children, siblings; 12% friends) of cognitively unimpaired adults who learned a personalized AD dementia risk estimate and an amyloid-β PET scan result through their participation in preclinical AD research. MEASUREMENT: Interviewees were asked about their desire for information regarding their family member's AD dementia risk, baseline expectations of risk, understanding of amyloid-β PET scan results, and the impact of AD dementia risk information on emotions, health behaviors, and future plans, as well as on perceptions of their family member's or friend's memory.

resultsInterviewees generally understood the AD dementia risk information (83%) and considered it valuable (75%). Risk information perceived as favorable elicited feelings of happiness and relief; unfavorable information elicited disappointment, as well as increased awareness of the participants' memory and monitoring for incipient changes in cognition. While noting that AD dementia risk information was not medically actionable at this time due to the lack of disease-modifying therapies, some interviewees described changes to their family members' and their own health behaviors and future plans.

conclusionGuidelines for the disclosure of AD dementia risk estimates and biomarker results to cognitively unimpaired adults should account for the needs and interests of individuals and their family members, who may step into a pre-caregiver role.

Indexed as

DisclosurePositron-Emission TomographyProdromal SymptomsAgedAlzheimer DiseaseAmyloidBiomarkersBrainCognitionFamilyFemaleHealthy VolunteersHumansInterviews as TopicMaleRisk FactorsAmyloidBiomarkersamyloid-βcare partnersdementiapatient educationPET scanpreclinical Alzheimer's disease

Identifiers

PMID34252201
PMCPMC8595546
OpenAlexW3179129982

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.