Have you ever interacted with a patient who said the following question? “My doctor told me I have something called EGFR. It’s just a bunch of letters, and I really do not understand what it means. Can you help me?”
As a nurse, being familiar with the terminology and being prepared to discuss this terminology with your patients are 2 different entities. Moreover, the individual setting in which an oncology nurse is working may correlate to the level of understanding that nurse possesses when it comes to genomics. For example, an inpatient care nurse working in a surgical unit may have little exposure to treatments based on biomarkers, whereas an ambulatory care nurse working in a busy lung cancer clinic probably has a much deeper understanding. With the explosion of new therapies for cancer in recent years, it is imperative that oncology nurses in all types of roles understand the language used to describe both somatic (acquired) and germline (hereditary or genetic) tumor profiles.
Fortunately, there are many resources available. However, there continues to be much confusion about how to thoughtfully relay this information to patients, and nurses are not alone. In a recent study, oncologists were surveyed to assess not only their use and perceptions of tumor genomic profiling (TGP) but also their perceived skills in interpretation and communication to patients.1 Although a high percentage of respondents reported using TGP, oncologists also reported they held mixed views about TGP utility and had received little to no training in interpreting or communicating TGP to their patients. Respondents agreed that training in this area is needed.1
Likewise, patient understanding of TGP is limited. At The Ohio State University Comprehensive Cancer Center in Columbus, Ohio, a quality improvement (QI) project using Plan-Do-Study-Act methodology was implemented by Senter et al in 2023. The QI team first reviewed current guidelines for alignment with educational efforts. They also completed a provider survey and conducted focus group interviews with a small number of patients (n = 12). Although patients had an understanding that the testing could influence treatment options, they had trouble identifying TGP from other types of testing.2 The QI team developed an animated video for patients to view prior to testing. The video is based on national guidelines and data collected from the QI project and addresses how TGP may inform treatment, the different processes for TGP, insurance coverage for TGP, and the potential need for germline genetic follow-up due to incidental findings. The authors note that the video should not add burden to providers; it still needs to be assessed in diverse populations and will hopefully address pretesting educational gaps.2
In addition to identifying education gaps for both providers and patients, work is being done to unify the terminology. In health care, we live with many acronyms; it’s hard to imagine what our vocabulary sounds like to our patients. The concepts of TGP are confusing enough, and we add another layer of confusion by using incongruous terminology. To that end, the LUNGevity Foundation led a working group consisting of professional societies, patient advocacy groups, and industry members that targeted development of common language for TGP.2 This work resulted in a white paper and infographic defining consistent terms.3,4 In accordance with the white paper, biomarker testing refers to somatic mutation testing, whereas inherited mutation testing can be named either genetic testing for an inherited mutation or genetic testing for inherited cancer risk.4 Although these terms are not mandated, the recommendations of this project’s authors are a stepping stone to improve understanding of this complex issue.2,3
Many different groups are working to clarify and support patient understanding. The Association of Community Cancer Centers, the Oncology Nursing Society, and the American Society of Clinical Oncology have developed tools to help providers and nurses explain TGP testing concepts to patients. Patient-oriented groups such as the American Cancer Society, the Cancer Support Community, and patient advocacy groups (eg, LUNGevity) also have educational materials. The key is to find what works best for you and your style of teaching patients about TGP and to use it consistently. When your patient says, “I have mutation XYZ,” you will be prepared to speak the language and know how and where to find these valuable resources.
1. Hall MJ, D’Avanzo P, Chertock Y, Brajuha J, Bass SB. Oncologists’ perceptions of tumor genomic profiling and the communication of test results and risks. Public Health Genomics. 2021;24(5-6):304-309. doi.10.1159/000517486
2. Senter L, Veney D, Surplus T, et al. Patient understanding of tumor genomic testing: a quality improvement effort. JCO Oncol Pract. 2023;19(1):e8-e14. doi:10.1200/OP.22.00316
3. Martin NA, Tepper JE, Giri VN,et al. Adopting consensus terms for testing in precision medicine. JCO Precis Oncol. 2021;5:PO.21.00027. doi.10.1200/po.21.00027
4. Konnick EQ, Jett C, Martin NA, et al. A white paper on the need for consistent terms for testing in precision medicine. 2020. Accessed February 20, 2023. https://bit.ly/3maJPDK