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Advanced cancer patient preferences for receiving molecular profiling results
Author(s) -
Best Megan,
Butow Phyllis,
Jacobs Chris,
Juraskova Ilona,
Savard Jacqueline,
Meiser Bettina,
Goldstein David,
Ballinger Mandy,
Bartley Nicci,
Napier Christine,
Davies Grace,
Thomas David,
Tucker Kathy,
Schlub Timothy,
Newson Ainsley J.
Publication year - 2020
Publication title -
psycho‐oncology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.41
H-Index - 137
eISSN - 1099-1611
pISSN - 1057-9249
DOI - 10.1002/pon.5446
Subject(s) - medicine , qualitative research , profiling (computer programming) , family medicine , focus group , informed consent , alternative medicine , pathology , computer science , social science , marketing , sociology , business , operating system
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.