Why Quality-of-Life Data Collection and Use Should Be Standardized When Evaluating Candidates for Hand Transplantation.


Journal

AMA journal of ethics
ISSN: 2376-6980
Titre abrégé: AMA J Ethics
Pays: United States
ID NLM: 101649265

Informations de publication

Date de publication:
01 11 2019
Historique:
entrez: 20 11 2019
pubmed: 20 11 2019
medline: 28 7 2020
Statut: epublish

Résumé

This article argues for 3 mutually reinforcing interventions in the field of hand transplantation (HTx): (1) collection of qualitative data about hand transplant recipients' subjective quality of life (QoL) outcomes, (2) multicenter standardization of data collection, and (3) use of data to develop evidence-based, standardized protocols for HTx candidate evaluation and information disclosure. These interventions are needed to improve candidate evaluation and informed consent processes in HTx, wherein the highly personal nature of desired outcomes justifies holding a candidate's consent to a standard approaching authenticity rather than the usual minimal standard of being informed and voluntary.

Identifiants

pubmed: 31742546
pii: amajethics.2019.974
doi: 10.1001/amajethics.2019.974
pii:
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

E974-979

Informations de copyright

© 2019 American Medical Association. All Rights Reserved.

Auteurs

Martin Kumnig (M)

A professor of clinical psychology in the Department of Medical Psychology at Innsbruck Medical University in Austria, where he is also head of the Center for Advanced Psychology in Plastic and Transplant Surgery.

Emma K Massey (EK)

A health psychologist in the Erasmus MC Department of Internal Medicine, Section of Nephrology and Transplantation, in Rotterdam, The Netherlands.

Lisa S Parker (LS)

A philosopher and the director of the Center for Bioethics and Health Law at the University of Pittsburgh in Pennsylvania.

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Classifications MeSH