A new qualitative study of how to properly prepare cancer patients for unanticipated inheritable genetic findings found their emotions ranged from gratitude to regret based on how much genetic counseling they received prior to tumor sequencing. These findings from research conducted by City of Hope with support from the American Cancer Society highlight the need for the development of scalable educational methods that will support patient decision making and consent for their treatment journey.
One major barrier to adequate education of cancer patients, according to healthcare providers, was insufficient clinic times. Providers support the development of online support tools and other standardized methods for providing pretest education to their patients. In addition, some oncologists surveyed noted they would discuss tumor sequencing in the context of a patient’s treatment for their cancer but did not consistently also talk about the possibility and implications of secondary findings due to time constraints.
“Communications with cancer patients is critical so they can provide informed consent about their treatments,” noted Stacy W. Gray, MD, chief of the division of clinical cancer genomics and professor in the department of medical oncology & therapeutics research at City of Hope. Gray is the corresponding author of the study, published this week in Genetics in Medicine.
It is important for providers to have conversations with patients they are treating to explain the difference between somatic and germline testing and talk about the possibility that tumor testing may reveal unanticipated, inheritable findings or no actionable findings at all,” Gray continued. “Because the patient’s condition may affect their treatment preferences, clinicians should reconfirm their interest in receiving secondary findings, document the preference in the electronic medical record and time this disclosure appropriately.”
The City of Hope team note that tumor sequencing is often ordered without extensive discussions with patients about what the tests may uncover. Secondary findings can impact the treatment regimen, patients’ lifestyle, reproductive decisions, and cancer patients’ emotions and psychological well-being. Further, discovery of secondary findings can place an even greater burden on the patient to disclose this information accurately to family members, which has the potential to cause psychological stress to loved ones.
All of this points to the need to for increased and consistent genetic interventions and clinical guidance to make sharing of genetic information easier as decisions for providing appropriate medical care are made.
While the providers surveyed differed in opinions on exactly how they should provide pre-test information to their patients and how it would fit in the current clinical workflow, they did agree that any information given to patients should include the differences between somatic and germline testing, the likelihood of medically actionable findings, and the possibility of being referred to a genetics provider.
The study findings point to the likelihood that, health care systems, labs, and genetic providers may eventually need to play a larger role in patient education prior to tumor sequencing. Educational tools for this, the researchers said, should be scalable educational interventions that facilitate informed consent, such as genetic websites, online tools and applications that include videos, visual aids or interactive multimedia.