Capacity to consent to research participation in adults with metastatic cancer: comparisons of brain metastasis, non-CNS metastasis, and healthy controls.

cancer consent capacity informed consent metastasis research participation

Journal

Neuro-oncology practice
ISSN: 2054-2577
Titre abrégé: Neurooncol Pract
Pays: England
ID NLM: 101640528

Informations de publication

Date de publication:
Jul 2020
Historique:
entrez: 9 8 2020
pubmed: 9 8 2020
medline: 9 8 2020
Statut: ppublish

Résumé

To evaluate the ability of individuals with metastatic cancer to provide informed consent to research participation, we used a structured vignette-based interview to measure 4 consenting standards across 3 participant groups. Participants included 61 individuals diagnosed with brain metastasis, 41 individuals diagnosed with non-CNS metastasis, and 17 cognitively intact healthy controls. All groups were evaluated using the Capacity to Consent to Research Instrument (CCRI), a performance-based measure of research consent capacity. The ability to provide informed consent to participate in research was evaluated across 4 consent standards: Results revealed that the brain metastasis group performed significantly lower than healthy controls on the consent standard of Our findings, using a performance-based assessment, are consistent with other research indicating that the research consent process may be overly cumbersome and confusing. This, in turn, may lead to research consent impairment not only in patient groups but also in some healthy adults with intact cognitive ability.

Sections du résumé

BACKGROUND BACKGROUND
To evaluate the ability of individuals with metastatic cancer to provide informed consent to research participation, we used a structured vignette-based interview to measure 4 consenting standards across 3 participant groups.
METHODS METHODS
Participants included 61 individuals diagnosed with brain metastasis, 41 individuals diagnosed with non-CNS metastasis, and 17 cognitively intact healthy controls. All groups were evaluated using the Capacity to Consent to Research Instrument (CCRI), a performance-based measure of research consent capacity. The ability to provide informed consent to participate in research was evaluated across 4 consent standards:
RESULTS RESULTS
Results revealed that the brain metastasis group performed significantly lower than healthy controls on the consent standard of
CONCLUSIONS CONCLUSIONS
Our findings, using a performance-based assessment, are consistent with other research indicating that the research consent process may be overly cumbersome and confusing. This, in turn, may lead to research consent impairment not only in patient groups but also in some healthy adults with intact cognitive ability.

Identifiants

pubmed: 32765894
doi: 10.1093/nop/npaa008
pii: npaa008
pmc: PMC7393275
doi:

Types de publication

Journal Article

Langues

eng

Pagination

439-445

Subventions

Organisme : NCATS NIH HHS
ID : KL2 TR000166
Pays : United States
Organisme : NCI NIH HHS
ID : R25 CA076023
Pays : United States

Informations de copyright

© The Author(s) 2020. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

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Auteurs

Kyler Mulhauser (K)

Department of Neurology, Division of Neuropsychology, University of Alabama at Birmingham, US.
O'Neal Comprehensive Cancer Center at UAB, Birmingham, Alabama, US.

Dario A Marotta (DA)

Department of Neurology, Division of Neuropsychology, University of Alabama at Birmingham, US.
O'Neal Comprehensive Cancer Center at UAB, Birmingham, Alabama, US.
Alabama College of Osteopathic Medicine, Dothan, Alabama, US.

Adam Gerstenecker (A)

Department of Neurology, Division of Neuropsychology, University of Alabama at Birmingham, US.

Gabrielle Wilhelm (G)

Department of Neurology, Division of Neuropsychology, University of Alabama at Birmingham, US.
O'Neal Comprehensive Cancer Center at UAB, Birmingham, Alabama, US.

Terina Myers (T)

Department of Neurology, Division of Neuropsychology, University of Alabama at Birmingham, US.
O'Neal Comprehensive Cancer Center at UAB, Birmingham, Alabama, US.

Meredith Gammon (M)

Department of Neurology, Division of Neuropsychology, University of Alabama at Birmingham, US.
O'Neal Comprehensive Cancer Center at UAB, Birmingham, Alabama, US.

David E Vance (DE)

Department of Neurology, Division of Neuropsychology, University of Alabama at Birmingham, US.
O'Neal Comprehensive Cancer Center at UAB, Birmingham, Alabama, US.

Burt Nabors (B)

Department of Neurology, Division of Neuropsychology, University of Alabama at Birmingham, US.
O'Neal Comprehensive Cancer Center at UAB, Birmingham, Alabama, US.

John Fiveash (J)

O'Neal Comprehensive Cancer Center at UAB, Birmingham, Alabama, US.
Department of Radiation Oncology, University of Alabama at Birmingham, US.

Kristen Triebel (K)

Department of Neurology, Division of Neuropsychology, University of Alabama at Birmingham, US.
O'Neal Comprehensive Cancer Center at UAB, Birmingham, Alabama, US.

Classifications MeSH