Jada G Hamilton1,2,3, Elyse Shuk1, Margaux Genoff Garzon1, Vivian M Rodríguez1, Joy Westerman1, Jennifer L Hay1,2, Kenneth Offit3,4, Mark E Robson3,4. 1. Behavioral Sciences Service, Department of Psychiatry & Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY. 2. Department of Psychiatry, Weill Cornell Medical College, Cornell University, New York, NY. 3. Clinical Genetics Service, Department of Medicine, Memorial Sloan Kettering Cancer Center, New York, NY. 4. Department of Medicine, Weill Cornell Medical College, Cornell University, New York, NY.
Abstract
PURPOSE: In patients with advanced cancers, tumor genomic profiling (TGP) can reveal secondary germline findings (SGFs) regarding inherited disease risks. This study examines the process by which patients with advanced cancers would make the decision about whether or not to learn these SGFs, and their preferences regarding specific challenging decision scenarios including whether patients should be required to receive SGFs and whether SGFs should be returned to family after a patient's death. PATIENTS AND METHODS: We conducted qualitative semi-structured interviews with 40 patients with advanced breast, bladder, colorectal, or lung cancer who had TGP. Data were collected regarding participants' perspectives about the hypothetical decision to learn their SGFs including their anticipated approach to the decision-making process, as well as their preferences about challenging decision scenarios. Data were evaluated using thematic content analysis. RESULTS: We identified themes regarding 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 SGFs decision-making processes of patients with advanced cancers, which can allow clinicians to provide patients 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: In patients with advanced cancers, tumor genomic profiling (TGP) can reveal secondary germline findings (SGFs) regarding inherited disease risks. This study examines the process by which patients with advanced cancers would make the decision about whether or not to learn these SGFs, and their preferences regarding specific challenging decision scenarios including whether patients should be required to receive SGFs and whether SGFs should be returned to family after a patient's death. PATIENTS AND METHODS: We conducted qualitative semi-structured interviews with 40 patients with advanced breast, bladder, colorectal, or lung cancer who had TGP. Data were collected regarding participants' perspectives about the hypothetical decision to learn their SGFs including their anticipated approach to the decision-making process, as well as their preferences about challenging decision scenarios. Data were evaluated using thematic content analysis. RESULTS: We identified themes regarding 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 SGFs decision-making processes of patients with advanced cancers, which can allow clinicians to provide patients 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.
Entities:
Keywords:
Secondary findings; cancer; decision making; incidental findings; precision medicine
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