Purpose In patients with advanced cancers, tumor genomic profiling (TGP) can reveal secondary germline findings (SGFs) with regard to inherited disease risks. This study examined the process by which patients with advanced cancers would decide about whether to learn these SGFs and their preferences about specific challenging decision scenarios, including whether patients should be required to receive SGFs and whether SGFs should be returned to the family after a patient’s death. Patients and Methods We conducted qualitative semistructured interviews with 40 patients with advanced breast, bladder, colorectal, or lung cancer who had undergone TGP. Data were collected on participants’ perspectives about the hypothetical decision to learn their SGFs, including their anticipated approach to the decision-making process, and their preferences about challenging decision scenarios. Data were evaluated by thematic content analysis. Results We identified themes with regard to participants’ preferred degree of decisional autonomy, perceived vital role of doctors, information needs, and anticipated process of deliberation. Although participants reported that this decision was ultimately their own, many wanted input from family and trusted others. Oncologists were expected to provide decision guidance and key clarifying information. Most participants stated that patients should be able to make a choice about receiving actionable SGFs, and a majority stated that SGFs should be available to family after a patient’s death. Conclusion These results provide insight into SGF decision-making processes of patients with advanced cancers, which can allow clinicians to provide patients with optimal decision support in this context. Patients with advanced cancers have specific information needs and decision-making preferences that educational and communication interventions should address to ensure that patients make informed choices about learning SGFs.
PURPOSE: IBM Watson for Oncology trained by Memorial Sloan Kettering (WFO) is a clinical decision support tool designed to assist physicians in choosing therapies for patients with cancer. Although substantial technical and clinical expertise has guided the development of WFO, patients’ perspectives of this technology have not been examined. To facilitate the optimal delivery and implementation of this tool, we solicited patients’ perceptions and preferences about WFO. METHODS: We conducted nine focus groups with 46 patients with breast, lung, or colorectal cancer with various treatment experiences: neoadjuvant/adjuvant chemotherapy, chemotherapy for metastatic disease, or systemic therapy through a clinical trial. In-depth qualitative and quantitative data were collected and analyzed to describe patients’ attitudes and perspectives concerning WFO and how it may be used in clinical care. RESULTS: Analysis of the qualitative data identified three main themes: patient acceptance of WFO, physician competence and the physician-patient relationship, and practical and logistic aspects of WFO. Overall, participant feedback suggested high levels of patient interest, perceived value, and acceptance of WFO, as long as it was used as a supplementary tool to inform their physicians’ decision making. Participants also described important concerns, including the need for strict processes to guarantee the integrity and completeness of the data presented and the possibility of physician overreliance on WFO. CONCLUSION: Participants generally reacted favorably to the prospect of WFO being integrated into the cancer treatment decision-making process, but with caveats regarding the comprehensiveness and accuracy of the data powering the system and the potential for giving WFO excessive emphasis in the decision-making process. Addressing patients’ perspectives will be critical to ensuring the smooth integration of WFO into cancer care.
Introduction: Genetic risk modifier testing (GRMT), an emerging form of genetic testing based on common single nucleotide polymorphisms and polygenic risk scores, has the potential to refine estimates of BRCA1/2 mutation carriers' breast cancer risks. However, for women to benefit from GRMT, effective approaches for communicating this novel risk information are needed. Objective: To evaluate patient preferences regarding risk communication materials for GRMT. Methods: We developed four separate presentations (panel of genes, icon array, verbal risk estimate, graphical risk estimate) of hypothetical GRMT results, each using varying risk communication strategies to convey different information elements including number of risk modifier variants present, variant prevalence among BRCA1/2 carriers, and implications and uncertainties of test results for cancer risk. Thirty BRCA1/2 carriers evaluated these materials (randomized to low, moderate, or high breast cancer risk versions). Qualitative and quantitative data were obtained through inperson interviews. Results: Across risk versions, participants preferred the presentation of the graphical risk estimate, often in combination with the verbal risk estimate. Interest in GRMT was high; 76.7% of participants wanted their own GRMT. Participants valued the potential for GRMT to clarify their cancer susceptibility and provide actionable information. Many (65.5%) anticipated that GRMT would make risk management decisions easier. Conclusions: Women with BRCA1/2 mutations could be highly receptive to GRMT, and the minimal amount of necessary information to be included in result risk communication materials includes graphical and verbal estimates of future cancer risk. Findings will inform clinical translation of GRMT in a manner consistent with patients' preferences.
Worries about MIR are relatively common among cancer survivors. An accurate assessment of the rates and patterns of worry could aid efforts to improve these individuals' survivorship care and education.
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