Neuroendocrine Cancer Patients, Doctors Disagree on Treatment Goals

City of Hope

LOS ANGELES — A new study by researchers at City of Hope, one of the largest cancer research and treatment organizations in the United States and a national leader in providing cancer patients with best-in-class, integrated supportive care programs, reveals that people with neuroendocrine cancer overwhelmingly prioritize quality of life over living longer. The study, entitled "Patient-Defined Goals and Preferences Among Adults With Advanced Neuroendocrine Tumors," was published today in the Journal of the National Comprehensive Cancer Network.

The researchers surveyed 60 City of Hope patients with advanced neuroendocrine tumors who were starting a new systemic therapy. Half were between the ages of 18 and 64, while the other half were 65 years or older.

Nearly 67% of those surveyed agreed with the statement "I would rather live a shorter life than lose my ability to take care of myself." Only 52% of patients thought they had the same treatment goals as their physician.

"Patients with a cancer type that typically has a longer life expectancy often come to understand that the treatment journey is more of a marathon than a sprint. So, how they feel on a day-to-day basis is more likely to be a top priority and could affect their choice of different treatment options," said Daneng Li, M.D., associate professor in the Department of Medical Oncology & Therapeutics Research at City of Hope and first author of the study. "Ultimately, the decision for a specific treatment is individualized, and we hope that our study sheds light on the need for better communication between care providers and patients with neuroendocrine tumors in order to fully develop personalized treatment plans that are truly in line with and support the goals of each patient."

Both the younger and older groups ranked maintaining independence as the most valued outcome (both 47%), followed by survival (37% for younger, 23% for older), reducing or eliminating pain (17% vs. 7%), and reducing or eliminating dizziness, fatigue or shortness of breath (0% vs. 23%).

City of Hope understands that providing patients with access to supportive care programs has a direct impact on their treatment outcomes. Beginning at diagnosis, City of Hope's supportive care program provides cancer patients with comprehensive physical, psychological, social and practical support services that improve outcomes and enable them to maximize their personal and family strengths. Offerings include care navigation, survivorship programs, specialists in cancer and aging, psychological and spiritual counseling, pain management and integrative medicine like yoga, massage, meditation and more.

"To better align with patients' goals, I think physicians need to incorporate outcomes, such as maintenance of independence, symptom or pain reduction, and additional quality-of-life measures, during the drug development and approval process to normalize these key considerations in the research process and ensure that the treatments we get approved not only help our patients live longer, but also really help our patients live better," Li said.

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