Survey Provides Insight Into Patient Experiences Receiving Comprehensive Tumor Genomic Profiling Results

While comprehensive genetic profiling has the potential to change the course of certain patients’ cancers, a recent survey found that patients often have difficulty understanding results and their implications.

Comprehensive genomic profiling (CGP) in oncology has expanded the potential for identifying molecular therapeutic targets and biomarkers, but complex results and their utility may overwhelm patients with information. A recent study surveyed patients with advanced cancer about their experiences with CGP and revealed that participants had difficulty understanding results and may need additional support when coping with non-actionable findings.

While CGP of tumor tissue can inform oncologists and assist in decision-making when molecular characteristics are targetable, the complexity of results can prove confusing for patients and caregivers. Distress related to uncertain or unactionable findings is another concern for patients.

In previous research, the authors of the current study found that patients who receive actionable results and are offered treatment reported lower levels of depression and anxiety, while those who received unactionable results reported elevated distress and were less satisfied with their decision to undergo CGP altogether.

“Thus, the purpose of this study was to qualitatively explore the experience of advanced cancer patients receiving and responding to diverse CGP results, in order to identify the areas where they may require support,” the authors wrote.

The study, published in Supportive Care in Cancer, included semi-structured interviews with 37 patients with advanced cancer, and all were completed within 2 weeks of patients receiving the results of CGP. Participants were part of The Molecular Screening and Therapeutics (MoST) program in Australia, and the group included a variety of diagnoses.

The entire cohort had exhausted therapeutic options and underwent CGP in an effort to identify novel treatments. A total of 67.6% of patients had actionable findings, 27.1% of which had clinical trials available through MoST and 40.5% of which had available trials outside of MoST.

CGP was viewed by most participants as a backup option when other treatments failed, as well as a way to keep hope alive with the possibility of discovering actionable findings. Most patients also faced unactionable findings with acceptance, although some were disappointed and lost hope. Participants also hoped that future advances may benefit them and reported that they would be willing to pay to have their results re-examined as more progress is made.

Providers in this study were clear that patients should keep low expectations prior to receiving their results, and some patients were therefore surprised by actionable results but grateful for the transparency. Even so, some patients kept high hopes even when results were negative. Overall, most participants felt no regret after CGP.

Difficulty understanding the implications of CGP was common, and many were confused about how CGP was related to cancer treatment. “Despite this poor understanding, a simplistic understanding that CGP would identify targets for possible treatment was enough to encourage them,” the authors noted. Over time, their understanding tended to improve.

Access to results was another challenge, as coordination between hospital services was suboptimal. Patients reported that there were delays in oncologists returning results and that discussions with oncologists were brief and uninformative. Patients would then be referred back to the research team. Mismatched investment between patients and oncologists was clear in this study.

“In the few cases where communication of results was felt to be good, participants noted that the use of lay terminology and optimistic language from oncologists was appreciated,” the authors wrote. Even so, patients’ understanding of results was often poor.

When asked how they decided whether to proceed with novel therapies identified by CGP, some patients reported making the decision on their own and others reported sharing the decision with their oncologist. Family members were not often involved in this study group’s decision making.

Participants’ attitudes about CGP were generally positive in this study, and many were happy to have explored their options regardless of the outcome. The authors note that during the return of CGP results, patient support is recommended to help address gaps in education, provide comfort when results are negative, and potentially to refer patients to genetic counselors when appropriate.

Reference

Best MC, Bartley N, Napier CE, et al. Return of comprehensive tumour genomic profiling results to advanced cancer patients: a qualitative study. Support Care Cancer. Published online July 9, 2022. doi:10.1007/s00520-022-07272-3