Return of comprehensive tumour genomic profiling results to advanced cancer patients: a qualitative study

Abstract

Purpose The introduction of comprehensive tumour genomic profiling (CGP) into clinical oncology allows the identification of molecular therapeutic targets. However, the potential complexity of genomic results and their implications may cause confusion and distress for patients undergoing CGP. We investigated the experience of advanced cancer patients receiving CGP results in a research setting. Methods Semi-structured interviews with 37 advanced cancer patients were conducted within two weeks of patients receiving CGP results. Interviewees were purposively sampled based on CGP result, cancer type, age and gender to ensure diversity. Themes were derived from interview transcripts using a framework analysis approach. Results We identified six themes: (1) hoping against the odds; (2) managing expectations; (3) understanding is cursory; (4) communication of results is cursory; (5) genomics and incurable cancer; and (6) decisions about treatment. Conclusion Despite enthusiasm regarding CGP about the hope it provides for new treatments, participants experienced challenges in understanding results, and acceptance of identified treatments was not automatic. Support is needed for patients undergoing CGP to understand the implications of testing and cope with non-actionable results.

Understanding communication between patients and healthcare professionals regarding comprehensive biomarker testing in precision oncology: A scoping review

“…Overall, patients viewed HCPs as the most trusted and impactful information source and valued transparent, empathic, and accessible communication 12,19,32,35,37 . Some patient groups were more motivated or equipped to participate in shared decision‐making surrounding cBT‐related discussions with their physician.…”

“…Patients need guidance throughout the cBT process and associated treatment as well as information tailored to their individual situation 12,15,16,33,35 . Careful management of relevant information and trust in their physician can help the patients feel informed rather than overwhelmed, so HCPs should choose an appropriate manner (e.g., language, illustration, and emotional support) and amount of information to be delivered, also pre‐testing 16,37,45 . To tailor information according to individual preferences, informed consent processes might be, for example, organized using a “tiered and binned model of counseling,” as previously developed for the purpose of multiplex testing for cancer susceptibility 63 .…”

“…17,18,21,22,[26][27][28][29][30][31][32][33] Additionally, evaluation of populations in two review articles showed an underrepresentation of other ethnic and minority groups, which was also supported by author statements in these publications. 30,33,[35][36][37][38][39] Patients were interested in receiving information on different types of cBT results, especially those impacting their own and their children and relatives' health. [17][18][19]28,30,32,33,36,38,40 However, four studies implied that interest in receiving information on variants of uncertain significance (VUSs) was variable or even absent, depending on the context and understanding of VUS implications.…”

“…18,19,28,36 Several overarching challenges surrounding cBTrelated communication were identified: the patients' general distress due to cancer diagnosis, 12,19,21,37,38,40,41 limited health literacy and lack of patients' understanding of genomic concepts, 12,17,19,20,37,38,42,43 uncertain significance of some cBT results, 38,40,44 a mismatch between high patient expectations and perceived benefit of cBT versus actual testing outcomes 12,20,33 and a potential lack of actionable alterations and/or therapeutic options based on a patient's genomic profile. 12,20,33,37,41,43 Also, additional costs and potential insurance issues were challenging for patients interested in undergoing cBT. 19,20,26,35,37 These concerns of potential health and social discrimination were shared by HCPs surveyed in three other studies.…”

“…11,38,41 3.2.3 | Post-testing and general communication-Additional considerations Sixteen additional studies focused on general or posttesting cBT-related communication in either the clinical care or research context, whereby the distinction between the two was not always clear. 12,[17][18][19][20][21][22]26,28,[31][32][33]36,37,47,48 Patients expressed the need for psychosocial support when receiving cBT results 37 and especially secondary findings as these results may expose personal vulnerabilities, imply discouraging health prospects, and negatively affect their family members. 17,26 Also, four studies pointed out that patients' motivation to undergo cBT and high expectations for an individualized or curative treatment may be misplaced due to their limited understanding or an exaggerated promise of cBT as presented in the media.…”