Results of a study of the perspectives of a group of women with metastatic breast cancer (mBC) and oncology healthcare providers showed general agreement regarding the important role played by prognostic information in the shared decision making (SDM) process but revealed differences with respect to the optimal timing for delivery of this information. These findings were published in the Journal of Palliative Medicine.1
“Effective shared decision making in metastatic breast cancer treatment requires prognostic understanding, without which patients may receive treatment inconsistent with personal preferences,” the study authors commented.
In this study, semistructured interviews were conducted with convenience samples of women with metastatic breast cancer (n=20) receiving treatment at a single academic medical center, as well as convenience samples of academic and medical oncologists (n=11), nurses (n=7), and lay providers (n=7) who worked at the institution where these patients were receiving treatment. At the time of the interviews, patients were receiving first-, second-, and third or higher-line therapy in 20%, 25%, and 55% of cases, respectively. Patient race was reported as non-Hispanic white (70%) or black or African American (30%).
Several themes emerged following analyses of the transcripts of these interviews which focused on the impact of prognostic information on the process of shared-decision making occurring between the patient and their care team.
Although most patients were in favor of receiving information related to their prognosis, their responses were varied regarding the optimal timing of its delivery. Some patients preferred to receive this information at diagnosis, whereas others wanted to wait until after disease progression following initial treatment. In some cases, religious beliefs were identified as a factor in these decisions.
Similarly, there was disagreement among providers regarding whether to delay delivery of prognostic information. Some providers cited concerns regarding the uncertainty in predicting prognosis, that patients would view subsequent treatment as futile, or to initiate these discussions early as a way “to balance quantity and quality of life.”
Other reasons providers gave for not delaying delivery of prognostic information were focused on avoidance of patient emotional distress and discomfort.
A common theme among nurse participants was that early initiation of conversations related to patient prognosis, including the potential role played by hospice, was important to help prepare patients to make decisions related to palliative care.
Finally, an area of agreement among providers was the importance of individualizing conversions related to patient prognosis to account for patient receptivity and goals.
In their concluding remarks, the study authors stated that “our study suggests providers are making efforts to respond to patient prognostic informational needs. Tailoring prognostic conversations based on patient preferences may reduce unrealistic expectations and promote patient adoption of less aggressive and toxic treatments.”
In continuing the theme of engaging patients with cancer in conversations related to their prognosis discussed in the study described above, a simple, free online tool that allows patients with cancer to estimate their prognosis called CancerSurvivalRates.com was launched at the end of 2019 by Courage Health for the purpose of facilitating these discussions between patient and provider.2
Following responses to a few simple questions related to patient age and sex, as well as cancer type, stage, and grade, and timing in relation to initial diagnosis, the tool provides “real world” estimates of 1-, 2-, and 5-year survival for populations with cancer based on data of actuarial outcomes from the Surveillance, Epidemiology, and End Results (SEER) program.2
A recent article describing this tool reported generally favorable reactions from the oncologists from whom comment was sought. Although most respondents opined that the tool cannot predict survival for an individual patient and cannot replace nuanced individualized discussions of prognosis occurring between patients with cancer and their care providers, there was general agreement that it was a welcomed addition to the armamentarium of educational tools for patients with cancer.3
1. Niranjan SJ, Turkman Y, Williams BR, et al. ‘‘I’d want to know, because a year’s not a long time to prepare for a death’’:Role of prognostic information in shared decision making among women with metastatic breast cancer [published online February 11, 2020]. J Palliat Med. doi: 10.1089/jpm.2019.0457
2. I’m looking for answers on survival rates for breast cancer. Courage Health. Accessed March 13, 2020. https://cancersurvivalrates.com/?type=breast&role=patient
3. Nelson R. ‘’How long do I have?’ New online tool patients with cancer. Medscape. March 13, 2020. Accessed March 13, 2020. https://www.medscape.com/viewarticle/924688#vp_2