Finding out what matters in decision-making related to genomics and personalized medicine in pediatric oncology:  Developing attributes to include in a discrete choice experiment

McCarthy, M; De Abreu Lourenco, R; McMillan, LJ; Meshcheriakova, O; Cao, A; Gillam, L

Finding out what matters in decision-making related to genomics and personalized medicine in pediatric oncology: Developing attributes to include in a discrete choice experiment

McCarthy, M De Abreu Lourenco, R

McMillan, LJ Meshcheriakova, O

Cao, A Gillam, L

Permalink

Publisher:: Springer Verlag
Publication Type:: Journal Article
Citation:: The Patient: Patient Centered Outcomes Research, 2020, 13, (3), pp. 347-361
Issue Date:: 2020

Closed Access

	Filename	Description	Size
	RDAL & EM_Genomics in Pediatric Oncology.pdf		549.07 kB	Adobe PDF	View/Open

Copyright Clearance Process

Recently Added
In Progress
Closed Access

This item is closed access and not available.

Full metadata record

Field	Value	Language
dc.contributor.author	McCarthy, M
dc.contributor.author	De Abreu Lourenco, R https://orcid.org/0000-0002-5978-8774
dc.contributor.author	McMillan, LJ
dc.contributor.author	Meshcheriakova, O https://orcid.org/0000-0003-4411-204X
dc.contributor.author	Cao, A
dc.contributor.author	Gillam, L
dc.date.accessioned	2021-02-04T23:17:15Z
dc.date.available	2021-02-04T23:17:15Z
dc.date.issued	2020
dc.identifier.citation	The Patient: Patient Centered Outcomes Research, 2020, 13, (3), pp. 347-361
dc.identifier.issn	1178-1653
dc.identifier.issn	1178-1661
dc.identifier.uri	http://hdl.handle.net/10453/145850
dc.description.abstract	ackground Treatment decision-making in pediatric oncology can be complex. Recent advances in genome sequencing and novel or ‘personalized’ therapies potentially increases the complexity of decision-making and treatment options. Objectives This study explored the views and experiences of healthcare providers (HCPs) and parents with respect to decision-making in difficult-to-treat cancers, including genomic decision-making. Methods A two-phase qualitative study was undertaken in which oncologists and nurses and parents of children with relapsed and refractory cancers were interviewed using a semi-structured interview guide. Data were analyzed thematically, with a focus on measurable themes relevant to the development of candidate attributes for a discrete choice experiment (DCE). Secondly, a review of studies that utilized stated preference experiments in the fields of genomics, medical decision-making, and pediatrics was undertaken and compared with the candidate attributes identified from interviews. Results Six candidate attributes were developed from the interview themes: clinical benefit, quality of life (QoL) including both treatment effects and functionality, likelihood of a target, cost (who pays), recommendation of HCP or extent family supported the decision, and whether a biopsy was needed. Two further candidate attributes were identified from the literature review: severity of illness and cost (dollar amount). Conclusions This study identified eight candidate attributes that will be further validated prior to developing a DCE aimed at better understanding factors influencing decision-making related to genomic sequencing and personalized medicine. This study and the proposed DCE will contribute to improving ethical and clinical practices in the application of novel genomic technology in pediatric oncology.
dc.format	Print
dc.language	eng
dc.publisher	Springer Verlag
dc.relation	EuroQol Research Foundation
dc.relation.ispartof	The Patient: Patient Centered Outcomes Research
dc.relation.isbasedon	10.1007/s40271-020-00411-0
dc.rights	info:eu-repo/semantics/restrictedAccess
dc.subject	11 Medical and Health Sciences
dc.title	Finding out what matters in decision-making related to genomics and personalized medicine in pediatric oncology: Developing attributes to include in a discrete choice experiment
dc.type	Journal Article
utslib.citation.volume	13
utslib.location.activity	New Zealand
utslib.for	11 Medical and Health Sciences
pubs.organisational-group	/University of Technology Sydney/Faculty of Business
pubs.organisational-group	/University of Technology Sydney/Strength - CHERE - Centre for Health Economics Research and Evaluation
pubs.organisational-group	/University of Technology Sydney/Strength - CHT - Health Technologies
pubs.organisational-group	/University of Technology Sydney
utslib.copyright.status	closed_access	*
pubs.consider-herdc	true
dc.date.updated	2021-02-04T23:16:56Z
pubs.issue	3
pubs.publication-status	Published
pubs.volume	13
utslib.citation.issue	3

Abstract:

ackground Treatment decision-making in pediatric oncology can be complex. Recent advances in genome sequencing and novel or ‘personalized’ therapies potentially increases the complexity of decision-making and treatment options. Objectives This study explored the views and experiences of healthcare providers (HCPs) and parents with respect to decision-making in difficult-to-treat cancers, including genomic decision-making. Methods A two-phase qualitative study was undertaken in which oncologists and nurses and parents of children with relapsed and refractory cancers were interviewed using a semi-structured interview guide. Data were analyzed thematically, with a focus on measurable themes relevant to the development of candidate attributes for a discrete choice experiment (DCE). Secondly, a review of studies that utilized stated preference experiments in the fields of genomics, medical decision-making, and pediatrics was undertaken and compared with the candidate attributes identified from interviews. Results Six candidate attributes were developed from the interview themes: clinical benefit, quality of life (QoL) including both treatment effects and functionality, likelihood of a target, cost (who pays), recommendation of HCP or extent family supported the decision, and whether a biopsy was needed. Two further candidate attributes were identified from the literature review: severity of illness and cost (dollar amount). Conclusions This study identified eight candidate attributes that will be further validated prior to developing a DCE aimed at better understanding factors influencing decision-making related to genomic sequencing and personalized medicine. This study and the proposed DCE will contribute to improving ethical and clinical practices in the application of novel genomic technology in pediatric oncology.

Please use this identifier to cite or link to this item:

http://hdl.handle.net/10453/145850