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Patient perspectives on molecular tumor profiling: “Why wouldn’t you?”

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 involv...

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Autores principales: Best, Megan C., Bartley, Nicole, Jacobs, Chris, Juraskova, Ilona, Goldstein, David, Newson, Ainsley J., Savard, Jacqueline, Meiser, Bettina, Ballinger, Mandy, Napier, Christine, Thomas, David, Biesecker, Barbara, Butow, Phyllis
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6670204/
https://www.ncbi.nlm.nih.gov/pubmed/31366375
http://dx.doi.org/10.1186/s12885-019-5920-x
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author Best, Megan C.
Bartley, Nicole
Jacobs, Chris
Juraskova, Ilona
Goldstein, David
Newson, Ainsley J.
Savard, Jacqueline
Meiser, Bettina
Ballinger, Mandy
Napier, Christine
Thomas, David
Biesecker, Barbara
Butow, Phyllis
author_facet Best, Megan C.
Bartley, Nicole
Jacobs, Chris
Juraskova, Ilona
Goldstein, David
Newson, Ainsley J.
Savard, Jacqueline
Meiser, Bettina
Ballinger, Mandy
Napier, Christine
Thomas, David
Biesecker, Barbara
Butow, Phyllis
author_sort Best, Megan C.
collection PubMed
description 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. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12885-019-5920-x) contains supplementary material, which is available to authorized users.
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spelling pubmed-66702042019-08-06 Patient perspectives on molecular tumor profiling: “Why wouldn’t you?” Best, Megan C. Bartley, Nicole Jacobs, Chris Juraskova, Ilona Goldstein, David Newson, Ainsley J. Savard, Jacqueline Meiser, Bettina Ballinger, Mandy Napier, Christine Thomas, David Biesecker, Barbara Butow, Phyllis BMC Cancer Research Article 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. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12885-019-5920-x) contains supplementary material, which is available to authorized users. BioMed Central 2019-07-31 /pmc/articles/PMC6670204/ /pubmed/31366375 http://dx.doi.org/10.1186/s12885-019-5920-x Text en © The Author(s). 2019 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research Article
Best, Megan C.
Bartley, Nicole
Jacobs, Chris
Juraskova, Ilona
Goldstein, David
Newson, Ainsley J.
Savard, Jacqueline
Meiser, Bettina
Ballinger, Mandy
Napier, Christine
Thomas, David
Biesecker, Barbara
Butow, Phyllis
Patient perspectives on molecular tumor profiling: “Why wouldn’t you?”
title Patient perspectives on molecular tumor profiling: “Why wouldn’t you?”
title_full Patient perspectives on molecular tumor profiling: “Why wouldn’t you?”
title_fullStr Patient perspectives on molecular tumor profiling: “Why wouldn’t you?”
title_full_unstemmed Patient perspectives on molecular tumor profiling: “Why wouldn’t you?”
title_short Patient perspectives on molecular tumor profiling: “Why wouldn’t you?”
title_sort patient perspectives on molecular tumor profiling: “why wouldn’t you?”
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6670204/
https://www.ncbi.nlm.nih.gov/pubmed/31366375
http://dx.doi.org/10.1186/s12885-019-5920-x
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