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 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.

Information, communication, and cancer patients’ trust in the physician: what challenges do we have to face in an era of precision cancer medicine?

“…Although patients felt well informed on average, many had to deal with a lack of PCM understanding. This has also been found in previous work [ 13 ]. A small number of patients had misinterpretations or questions regarding heredity and treatment options in case of a positive mutation result.…”

Patients’ and Oncologists’ Knowledge and Expectations Regarding Tumor Multigene Next-Generation Sequencing: A Narrative Review

“…Even in cases where patients were advised that it was unlikely that there would be improvements to their cancer care, they seemed eager to undergo testing for the possibility that they might derive personal benefit, to contribute to research, or to help their family. However, in two studies [10,20] patients expressed concerns about receiving unhelpful results or learning negative information (e.g., poor prognosis). In the 2012 study by Gray et al [20], Black patients were more than twice as likely as White patients (48% vs. 20%) to express worry about psychological harms of tumor NGS.…”

“…Table 1 includes three publications [7][8][9] from a single survey of 100 patients with breast cancer recruited during their first visit to the University of Texas MD Anderson Cancer Center who were asked to provide consent for tissue banking. Table 2 includes three publications [10][11][12] from the Psychosocial Issues in Genomics in Oncology (PiGeOn) Project, a substudy of the Molecular Screening and Therapeutics Program in Sydney, Australia, which provided tumor molecular profiling to 1,000 patients with advanced cancer for whom there are no further therapeutic options. Table 2 also includes two publications by Blijsma et al [13,14] who interviewed patients (twice) regarding attitudes toward secondary germline findings from tumor NGS and then, shortly thereafter, conducted a third set of more in-depth interviews with the same patients, summarized in a separate publication.…”

Advanced cancer patient preferences for receiving molecular profiling results

“…Our paper on motivation for participation in the PiGeOn study 9 reflected the overwhelming need this cohort had to find new treatments. MP was felt to be an important aspect of cancer management that should be widely available in the clinical context.…”