Patient perspectives on molecular tumor profiling: "why wouldn't you?"

Best, MC; Bartley, N; Jacobs, C; Juraskova, I; Goldstein, D; Newson, AJ; Savard, J; Meiser, B; Ballinger, M; Napier, C; Thomas, D; Biesecker, B; Butow, P; Tucker, K; Schlub, T; Vines, R; Vines, K; Kirk, J; Young, MA

Patient perspectives on molecular tumor profiling: "why wouldn't you?"

Best, MC

Bartley, N

Jacobs, C

Juraskova, I

Goldstein, D

Newson, AJ

Savard, J

Meiser, B

Ballinger, M

Napier, C

Thomas, D

Biesecker, B Butow, P

Tucker, K Schlub, T Vines, R Vines, K Kirk, J Young, MA

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Publication Type:: Journal Article
Citation:: BMC Cancer, 2019, 19 (1)
Issue Date:: 2019-07-31

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Field	Value	Language
dc.contributor.author	Best, MC https://orcid.org/0000-0003-1570-8872	en_US
dc.contributor.author	Bartley, N https://orcid.org/0000-0001-9052-1616	en_US
dc.contributor.author	Jacobs, C https://orcid.org/0000-0002-9557-9080	en_US
dc.contributor.author	Juraskova, I https://orcid.org/0000-0001-9396-4113	en_US
dc.contributor.author	Goldstein, D https://orcid.org/0000-0001-6142-3291	en_US
dc.contributor.author	Newson, AJ https://orcid.org/0000-0002-3460-772X	en_US
dc.contributor.author	Savard, J https://orcid.org/0000-0002-7965-6103	en_US
dc.contributor.author	Meiser, B https://orcid.org/0000-0002-5086-0784	en_US
dc.contributor.author	Ballinger, M https://orcid.org/0000-0002-9706-0514	en_US
dc.contributor.author	Napier, C https://orcid.org/0000-0001-8009-7735	en_US
dc.contributor.author	Thomas, D https://orcid.org/0000-0002-2527-5428	en_US
dc.contributor.author	Biesecker, B	en_US
dc.contributor.author	Butow, P https://orcid.org/0000-0003-3562-6954	en_US
dc.contributor.author	Tucker, K	en_US
dc.contributor.author	Schlub, T	en_US
dc.contributor.author	Vines, R	en_US
dc.contributor.author	Vines, K	en_US
dc.contributor.author	Kirk, J	en_US
dc.contributor.author	Young, MA	en_US
dc.date.available	2019-07-10	en_US
dc.date.issued	2019-07-31	en_US
dc.identifier.citation	BMC Cancer, 2019, 19 (1)	en_US
dc.identifier.uri	http://hdl.handle.net/10453/135909
dc.description.abstract	© 2019 The Author(s). Aim: This study explored the attitudes of patients with advanced cancer towards MTP and return of results, prior to undergoing genomic testing within a research program. Methods: Participants were recruited as part of the longitudinal PiGeOn (Psychosocial Issues in Genomics in Oncology) study involving patients with advanced/metastatic solid cancer who had exhausted therapeutic options and who were offered MTP in order to identify cognate therapies. Twenty patients, selected by purposive sampling, were interviewed around the time they gave consent to MTP. Interviews were audio recorded, transcribed and analysed using thematic analysis. Themes identified in the transcripts were cross-validated via qualitative responses to the PiGeOn study survey (n = 569; 63%). Results: All interviewed participants gave consent to MTP without reservation. Three themes were identified and further supported via the survey responses: (1) Obvious agreement to participate, primarily because of desire for new treatments and altruism. (2) The black box - while participant knowledge of genomics was generally poor, faith in their oncologists and the scientific process encouraged them to proceed with testing; and (3) Survival is the priority - receiving treatment to prolong life was the priority for all participants, and other issues such as identification of a germline variant were generally seen as ancillary. Conclusion: Having advanced cancer seemed to abrogate any potential concerns about MTP. Participants valued the research for varied reasons, but this was secondary to their priority to survive. While no negative attitudes toward MTP emerged, limitations in understanding of genomics were evident.	en_US
dc.relation.ispartof	BMC Cancer	en_US
dc.relation.isbasedon	10.1186/s12885-019-5920-x	en_US
dc.subject.classification	Oncology & Carcinogenesis	en_US
dc.subject.mesh	Humans	en_US
dc.subject.mesh	Neoplasms	en_US
dc.subject.mesh	Neoplasm Staging	en_US
dc.subject.mesh	Survival Analysis	en_US
dc.subject.mesh	Cohort Studies	en_US
dc.subject.mesh	Health Knowledge, Attitudes, Practice	en_US
dc.subject.mesh	Adult	en_US
dc.subject.mesh	Aged	en_US
dc.subject.mesh	Middle Aged	en_US
dc.subject.mesh	Patients	en_US
dc.subject.mesh	Patient Participation	en_US
dc.subject.mesh	Female	en_US
dc.subject.mesh	Male	en_US
dc.subject.mesh	Patient Education as Topic	en_US
dc.subject.mesh	Pathology, Molecular	en_US
dc.title	Patient perspectives on molecular tumor profiling: "why wouldn't you?"	en_US
dc.type	Journal Article
utslib.citation.volume	1	en_US
utslib.citation.volume	19	en_US
utslib.for	1112 Oncology and Carcinogenesis	en_US
utslib.for	1117 Public Health and Health Services	en_US
pubs.embargo.period	Not known	en_US
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Graduate School of Health
utslib.copyright.status	open_access
pubs.issue	1	en_US
pubs.publication-status	Published	en_US
pubs.volume	19	en_US

Abstract:

© 2019 The Author(s). Aim: This study explored the attitudes of patients with advanced cancer towards MTP and return of results, prior to undergoing genomic testing within a research program. Methods: Participants were recruited as part of the longitudinal PiGeOn (Psychosocial Issues in Genomics in Oncology) study involving patients with advanced/metastatic solid cancer who had exhausted therapeutic options and who were offered MTP in order to identify cognate therapies. Twenty patients, selected by purposive sampling, were interviewed around the time they gave consent to MTP. Interviews were audio recorded, transcribed and analysed using thematic analysis. Themes identified in the transcripts were cross-validated via qualitative responses to the PiGeOn study survey (n = 569; 63%). Results: All interviewed participants gave consent to MTP without reservation. Three themes were identified and further supported via the survey responses: (1) Obvious agreement to participate, primarily because of desire for new treatments and altruism. (2) The black box - while participant knowledge of genomics was generally poor, faith in their oncologists and the scientific process encouraged them to proceed with testing; and (3) Survival is the priority - receiving treatment to prolong life was the priority for all participants, and other issues such as identification of a germline variant were generally seen as ancillary. Conclusion: Having advanced cancer seemed to abrogate any potential concerns about MTP. Participants valued the research for varied reasons, but this was secondary to their priority to survive. While no negative attitudes toward MTP emerged, limitations in understanding of genomics were evident.

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

http://hdl.handle.net/10453/135909