Advanced cancer patient preferences for receiving molecular profiling results

Abstract

Objective: This study aimed to discern preferences for receiving somatic molecular profiling (MP) results in cancer patients who have given consent to undergo testing. Methods: We conducted a mixed-methods study to explore patients' views on which MP results they would like to receive and why. Advanced cancer patients (n = 1299) completed questionnaires after giving consent to participate in a parent genomics study and undergoing MP. A subset of patients (n = 20) participated in qualitative interviews. Results: Almost all (96%) participants were interested in receiving results which would direct cancer treatment (ie, were actionable). A smaller majority wanted to access results which were not actionable (64%) or were variants of unknown significance (60%). Most (86%) were interested in finding out about germline findings, though not as a priority. Themes identified in interview data were: (a) Cancer is the focus; (b) Trust in clinicians; and (c) Respect for a right not to know. Conclusions: The majority of advanced cancer patients undergoing MP prioritised results which would lead to treatment options. They trusted their oncologists to help them navigate the results return process. While there was interest in knowing about other results, this was a lesser priority. Nevertheless, given high levels of interest in receiving all results, ethical aspects of not providing uninformative results requires further research, including a consideration of patient rationales for desiring this information and what health professionals can and should do to support patients in the absence of meaningful information being available.

Psychological predictors of advanced cancer patients’ preferences for return of results from comprehensive tumor genomic profiling

“…On the other hand, our sample was comparable to the general population in terms of the percentage speaking a language other than English at home (22% compared to 26% in the general population) and in terms of the percentage who had biological children (77% compared to 76% in the general population) (Australian Bureau of Statistics, 2017), indicating good generalizability in terms of these characteristics. Third, some patients were self-referred (Best et al, 2020), perhaps reflecting higher health literacy. Finally, since participants in MoST do not receive a VUS result as a result of their CTGP, this was a hypothetical question for these participants.…”

“…To check which variables were associated with the desire to receive each type of result, logistic regressions were performed using SPSS Version 25. The following demographic variables, found to be significant in the previous analysis (Best et al, 2020), were included in the current analyses to control for their potentially confounding influence: age, education, language spoken at home (as a proxy for English as a second language), remote/ rural versus urban location, whether participants had biological children, and whether any first-degree relatives were diagnosed with cancer. The outcome variables relating to preferences for being informed of results were categorized as "Yes" versus "No"/"Maybe"/"Do not know" due to the small number of "No," "Maybe," and "Do not know" responses.…”

“…Qualitative studies have reported that patients with advanced cancer offered tumor testing had positive views about, and unequivocally accepted, screening for somatic tumor genetic variants linked to possible cancer treatments (Best et al, 2019; Best et al, 2020; Hamilton et al, 2017; Liang et al, 2017). In a quantitative assessment of advanced cancer patients' perceived value of CGTP, we found that as many as 89% of such patients would have CGTP for as little as a 1% actionable return rate (Butow, Davies, et al, 2020).…”

“…In these studies, patients perceived CGTP to have high importance even though they had had poor to moderate knowledge of CGTP (Davies et al, 2020; Liang et al, 2017). They preferred that discussion focused on practical matters relevant to treatment (Liang et al, 2017) and information that could inform treatment options rather than other information, which they felt might confuse them (Best et al, 2020). Indeed, patients considering hypothetical (Miller et al, 2014) and actual CTGP (Best et al, 2019) were confused about the utility of nonactionable findings (Miller et al, 2014).…”

Psychological outcomes in advanced cancer patients after receiving genomic tumor profiling results.

“…A meta-analysis of BRCA1/2 mutation carriers and noncarriers summarized that women who were mutation carriers experienced higher emotional distress immediately after receiving results, which decreased to pretesting levels with time (Hamilton et al, 2009), highlighting the complex interplay between the impact of cancer and receipt of genetic and genomic tests on one's emotional state. In our earlier work we found that despite the possibility of genomic testing increasing psychosocial concerns particularly when receiving unwanted knowledge, the majority of advanced cancer patients were interested in receiving results, especially if they were actionable (Best et al, 2020), which is supported by other studies (Hamilton et al, 2017). Concurrently, we also found that patients had heightened optimism and hope that the result would be actionable and that a drug would be readily available and successful for their cancer, despite being informed that the likelihood of receiving an actionable result following CGP was low (Best et al, 2019).…”