This study aimed to investigate preferences for receiving somatic molecular profiling (MP) results in cancer patients who had exhausted standard treatment options and given consent to undergo testing.
We conducted a mixed-methods study to understand patients’ views on which MP results they would like to receive and why. Advanced cancer patients (n=1299, response rate 96%) completed questionnaires after giving consent to participate in a parent genomics study. A subset of patients (n=20) participated in qualitative interviews until data saturation was reached and transcripts were thematically analysed.
Almost all (96%) participants were interested in receiving results which would direct cancer treatment (i.e. were actionable). A smaller majority also wanted to access results which were not actionable (64%) or were variants of unknown significance (60%). Most (86%) were interested in finding out germline findings, though not as a priority. Logistic regression indicated that patients who were not interested in being informed about actionable gene variants were more likely to be culturally and linguistically diverse (95% CI 0.25-0.96, p = .038), not have biological children (95% CI 0.22-0.94, p = .034) or not have a first degree relative with cancer (95% CI 0.22-0.93, p = .031). Themes developed from interview data were: 1) Cancer is the focus, therefore results relating to treatment were prioritised; 2) Trust in clinicians, to filter results and direct management; and 3) Respect for a right not to know any MP results.
The majority of advanced cancer patients undergoing MP prioritised results which would lead to treatment options because their focus was on the desire to prolong life and their need for hope. Participants trusted their oncologists to help them navigate the results return process. While there was some interest in knowing other results, they were valued according to their perceived utility.