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Study Finds That Patients With Neuroendocrine Cancer and Doctors May Agree on Treatment Goals Only Half of the Time


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Researchers revealed that patients with neuroendocrine cancer overwhelmingly prioritized quality of life over living longer, according to a new study published by Li et al in JNCCN–Journal of the National Comprehensive Cancer Network.  

The researchers surveyed 60 patients with advanced neuroendocrine tumors of gastrointestinal, pancreatic, thoracic, or unknown primary origin who were starting a new systemic therapy—50% of whom were aged between 18 and 64 years and 50% of whom were aged 65 years and older. The patients’ feelings were tracked via four different survey methods ranking the importance of various outcomes and other preference assessment tools.

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, the researchers discovered.

Need for Personalized Treatment

“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,” explained first study author Daneng Li, MD, Associate Professor in the Department of Medical Oncology and Therapeutics Research as well as Co-Director of the Neuroendocrine Tumor program at City of Hope. “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.”

When comparing younger patient groups with older patient groups, the researchers found that both groups ranked “maintaining independence” as the most valued outcome (47%); followed by survival (37% for younger patients vs 23% for older patients); reducing or eliminating pain (17% vs 7%); and reducing or eliminating dizziness, fatigue, or shortness of breath (0% vs 23%).

“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,” Dr. Li concluded.

Disclosure: For full disclosures of the study authors, visit jnccn.org.

The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.
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