Evidence map›Paper›PMID 38250770›Full record

ArticleJournal of Alzheimer's disease : JAD2024

Research Participants' Perspectives on Precision Diagnostics for Alzheimer's Disease.

Hadley Stevens Smith, Jill O Robinson, Ariel Levchenko, Stacey Pereira, Belen Pascual, Kathleen Bradbury, Victoria Arbones, Jamie Fong, Joshua M Shulman, Amy L McGuire and 1 more

Open access · bronzeAbstract read
In one paragraph

Article in Journal of Alzheimer's disease : JAD, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed, 1 pooled it
2.3field-weighted citation impact, top 12% 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

6 citing papers in PubMed, 1 synthesis or guideline pooled it, 6 citations in OpenAlex.

  1. Pooled it
  2. Article
  3. 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
  4. Amyloid PET disclosure in subjective cognitive decline: Patient experiences over time.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024
    Article
  5. Review
  6. 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

11 authors at 3 institutions in 1 country.

Hadley Stevens SmithCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA.
Jill O RobinsonCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA.
Ariel LevchenkoCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA.
Stacey PereiraCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA.
Belen PascualDepartment of Neurology, Nantz National Alzheimer Center, Houston Methodist, Houston, TX, USA.
Kathleen BradburyDepartment of Neurology, Nantz National Alzheimer Center, Houston Methodist, Houston, TX, USA.
Victoria ArbonesDepartment of Neurology, Nantz National Alzheimer Center, Houston Methodist, Houston, TX, USA.
Jamie FongDepartment of Molecular and Human Genetics, Baylor College of Medicine, Houston, TX, USA.
Joshua M ShulmanDepartment of Molecular and Human Genetics, Baylor College of Medicine, Houston, TX, USA.
Amy L McGuireCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA.
Joseph MasdeuDepartment of Molecular and Human Genetics, Baylor College of Medicine, Houston, TX, USA.
Baylor College of Medicine · USHouston Methodist · USHarvard University · US

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundUnderstanding research participants' responses to learning Alzheimer's disease (AD) risk information is important to inform clinical implementation of precision diagnostics given rapid advances in disease modifying therapies.

objectiveWe assessed participants' perspectives on the meaning of their amyloid positron emission tomography (PET) imaging results for their health, self-efficacy to understand their results, psychological impact of learning their results, experience receiving their results from the clinical team, and interest in genetic testing for AD risk.

methodsWe surveyed individuals who were being clinically evaluated for AD and received PET imaging six weeks after the return of results. We analyzed responses to close-ended survey items by PET result using Fisher's exact test and qualitatively coded open-ended responses.

resultsA total of 88 participants completed surveys, most of whom had mild cognitive impairment due to AD (38.6%), AD (28.4%), or were cognitively unimpaired (21.6%). Participants subjectively understood their results (25.3% strongly agreed, 41.8% agreed), which could help them plan (16.5% strongly agreed, 49.4% agreed). Participants with a negative PET result (n = 25) reported feelings of relief (Fisher's exact p < 0.001) and happiness (p < 0.001) more frequently than those with a positive result. Most participants felt that they were treated respectfully and were comfortable voicing concerns during the disclosure process. Genetic testing was anticipated to be useful for medical care decisions (48.2%) and to inform family members about AD risk (42.9%).

conclusionsParticipants had high subjective understanding and self-efficacy around their PET results and did not experience negative psychological effects. Interest in genetic testing was high.

Indexed as

Alzheimer DiseaseCognitive DysfunctionAmyloidAmyloid beta-PeptidesEmotionsHumansPositron-Emission TomographyAmyloidAmyloid beta-PeptidesAlzheimer’s diseasegenetic testingneuroimagingsurveys and questionnaires

Identifiers

PMID38250770
PMCPMC10894569
OpenAlexW4390907971

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
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.