Genetic test use in oncology is growing, yet providers' experiences with evolving testing norms and their implications for patient care remain under-explored. In interviews with oncologists and cancer genetics professionals, 22 key informants described the increasing importance of germline results for therapeutic decision-making, preference for ordering tests directly rather than referring, and rapid adoption of cancer gene panels for testing. Implications for informed consent, result interpretation, and patient management were identified. These results suggest concerns raised by the transition of genetic test delivery from cancer genetics professionals to oncologists that must be addressed in practice guidelines and provider training.
Objective The response to adverse events can lack patient‐centeredness, perhaps because the involved institutions and other stakeholders misunderstand what patients and families go through after care breakdowns. Study Setting Washington and Texas. Study Design The HealthPact Patient and Family Advisory Council (PFAC) created and led a five‐stage simulation exercise to help stakeholders understand what patients experience following an adverse event. The half‐day exercise was presented twice. Data Collection and Analysis Lessons learned related to the development and conduct of the exercise were synthesized from planning notes, attendee evaluations, and exercise discussion notes. Principal Findings One hundred ninety‐four individuals attended (86 Washington and 108 Texas). Take‐homes from these exercises included the fact that the response to adverse events can be complex, siloed, and uncoordinated. Participating in this simulation exercise led stakeholders and patient advocates to express interest in continued collaboration. Conclusions A PFAC‐designed simulation can help stakeholders understand patient and family experiences following adverse events and potentially improve their response to these events.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
customersupport@researchsolutions.com
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.