Patient perspectives on molecular tumor profiling: “Why wouldn’t you?”
Abstract 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...
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| Format: | Article |
| Language: | English |
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BMC
2019-07-01
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| Series: | BMC Cancer |
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| Online Access: | http://link.springer.com/article/10.1186/s12885-019-5920-x |
| _version_ | 1818885090618376192 |
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| author | Megan C. Best Nicole Bartley Chris Jacobs Ilona Juraskova David Goldstein Ainsley J. Newson Jacqueline Savard Bettina Meiser Mandy Ballinger Christine Napier David Thomas Barbara Biesecker Phyllis Butow Members of the PiGeOn Project |
| author_facet | Megan C. Best Nicole Bartley Chris Jacobs Ilona Juraskova David Goldstein Ainsley J. Newson Jacqueline Savard Bettina Meiser Mandy Ballinger Christine Napier David Thomas Barbara Biesecker Phyllis Butow Members of the PiGeOn Project |
| author_sort | Megan C. Best |
| collection | DOAJ |
| description | Abstract 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. |
| first_indexed | 2024-12-19T15:59:55Z |
| format | Article |
| id | doaj.art-760cf88fd7234caf9ffb900768458fcd |
| institution | Directory Open Access Journal |
| issn | 1471-2407 |
| language | English |
| last_indexed | 2024-12-19T15:59:55Z |
| publishDate | 2019-07-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Cancer |
| spelling | doaj.art-760cf88fd7234caf9ffb900768458fcd2022-12-21T20:14:58ZengBMCBMC Cancer1471-24072019-07-011911910.1186/s12885-019-5920-xPatient perspectives on molecular tumor profiling: “Why wouldn’t you?”Megan C. Best0Nicole Bartley1Chris Jacobs2Ilona Juraskova3David Goldstein4Ainsley J. Newson5Jacqueline Savard6Bettina Meiser7Mandy Ballinger8Christine Napier9David Thomas10Barbara Biesecker11Phyllis Butow12Members of the PiGeOn ProjectUniversity of Sydney, School of Psychology, Psycho-Oncology Co-operative Research Group (PoCoG)University of Sydney, School of Psychology, Psycho-Oncology Co-operative Research Group (PoCoG)University of Technology Sydney, Graduate School of HealthUniversity of Sydney, School of Psychology, Psycho-Oncology Co-operative Research Group (PoCoG)Prince of Wales Clinical School, University of NSWFaculty of Medicine and Health, Sydney Health Ethics, University of SydneySchool of Medicine, Deakin UniversityPsychosocial Research Group, Prince of Wales Clinical School, University of NSWCancer Division, Garvan Institute of Medical ResearchCancer Division, Garvan Institute of Medical ResearchCancer Division, Garvan Institute of Medical ResearchRTI InternationalUniversity of Sydney, School of Psychology, Psycho-Oncology Co-operative Research Group (PoCoG)Abstract 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.http://link.springer.com/article/10.1186/s12885-019-5920-xCancerQualitativeMolecular tumor profilingGenomicPatient attitudesPsychosocial |
| spellingShingle | Megan C. Best Nicole Bartley Chris Jacobs Ilona Juraskova David Goldstein Ainsley J. Newson Jacqueline Savard Bettina Meiser Mandy Ballinger Christine Napier David Thomas Barbara Biesecker Phyllis Butow Members of the PiGeOn Project Patient perspectives on molecular tumor profiling: “Why wouldn’t you?” BMC Cancer Cancer Qualitative Molecular tumor profiling Genomic Patient attitudes Psychosocial |
| 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 | Cancer Qualitative Molecular tumor profiling Genomic Patient attitudes Psychosocial |
| url | http://link.springer.com/article/10.1186/s12885-019-5920-x |
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