Increased longevity not top treatment goal for most patients with neuroendocrine tumors
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Only 30% of individuals with neuroendocrine tumors rank living longer as their single top priority in treating their cancer, according to a study conducted by researchers at City of Hope.
The findings, published in Journal of the National Comprehensive Cancer Network, showed the other 70% prioritize overcoming pain, fatigue or lack of function above extending survival.
“Many patients with neuroendocrine tumors come to realize that the natural course of the diagnosis may often yield a longer life expectancy compared with other cancer types,” lead researcher Daneng Li, MD, associate professor in the department of medical oncology and therapeutics research at City of Hope, told Healio. “As a result, their treatment journey is often viewed as a marathon rather than a sprint.”
In the study of 60 patients with advanced neuroendocrine tumors of gastrointestinal, pancreatic, thoracic or unknown primary origin, respondents also expressed the feeling that their physicians focused on extending OS, even if it negatively affected other outcomes. Only 51.7% of patients believed that their treatment goals aligned with those of their physician.
Li spoke with Healio about the possible reasons for these perceptions and how oncologists might address patient priorities.
Healio: Why do you think so few patients with neuroendocrine tumors consider living longer to be their top priority?
Li: Because these patients may be on treatment for prolonged periods of time, they will be impacted longer by the effects of treatment on how they feel and function on a day-to-day basis. These health outcomes will likely become more of a priority to them, as demonstrated in our study. Yet, I don’t think this sentiment is necessarily specific to patients with neuroendocrine tumors. It could be a phenomenon that we see for other indolent cancer types, as well, such as low-grade prostate cancer or chronic lymphocytic leukemia, but ultimately more research into this area is needed.
Healio: In your study, patients perceived their physicians as being singularly focused on survival. What do physicians actually prioritize?
Li: Our study only surveyed patients on their perception of what they felt their oncologist’s goal of treatment would be. We recognize the limitation — we did not specifically ask the physician what their goal was with treatment selection. In our future studies, both patient and physician treatment goals will be solicited directly to assess for any evidence of discordance.
Healio: Why do you think independence is valued so highly in this population?
Li: This patient population realizes that this diagnosis often is viewed more as a chronic disease. As a result, they may be on treatment for longer periods of time, often years. Like other chronic diseases, patients will want to make sure that the treatments they take are not only allowing them to live longer, but hopefully also better. As a result, tolerance to therapy and maintaining their daily activities and independence are paramount.
Healio: Did age play any role in these patient priorities?
Li: Surprisingly, age did not play a major role overall. We found that maintaining independence was the most valued outcome in both younger and older patients at the exact same rate. There was no significant association between age and patient preferences for treatment outcomes.
Healio: What would you recommend to practicing oncologists as far as becoming more aware of and aligned with patient goals for managing neuroendocrine tumors?
Li: Cancer care providers need to have more honest dialogue with all their patients with neuroendocrine tumors about treatment goals and the priorities of various health outcomes with treatment. Don’t shy away from asking sometimes difficult questions regarding goals of care from the very beginning of various treatments. This is vital to ensure that we are truly respecting patients’ true desires — what they really would like to get out of their various treatments.
Healio: What do you have planned next in your research on this topic?
Li: Traditionally, in the oncology field, and in drug development specifically, we have always used overall survival as the gold standard for the primary outcome with treatment. However, as our study shows, this might not be the most important outcome for patients with neuroendocrine cancer. To better align with patients’ goals, I think we need to incorporate other outcomes such as maintenance of independence, reducing symptoms or pain, and additional quality-of-life measures as key outcomes during the drug development/approval process. This will normalize these key considerations in our research process. We hope to incorporate these measures in future clinical trials to ensure that the treatments that ultimately get approved not only help patients live longer, but also really help our patients live better.
For more information:
Daneng Li, MD, can be reached at City of Hope, Department of Medical Oncology and Therapeutics Research, 1500 E. Duarte Road, Duarte, CA 91010; email: danli@coh.org.
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