Patients and doctors agree on treatment goals only half the time, according to JNCCN study on people with neuroendocrine tumors

PLYMOUTH MEETING, PA [December 12, 2022] — New research from cancer research and treatment organization City of Hope in the December 2022 issue of JNCCN—Journal of the National Comprehensive Cancer Network finds that only 30% of patients with advanced neuroendocrine tumors (NETs) say their top goal for treatment is living longer. The remaining patients selected other single specific treatment goals as most important, such as maintaining the ability to do daily activities, reducing or eliminating pain, or reducing or eliminating symptoms like fatigue. 66.7% of those surveyed agreed with the statement: “I would rather live a shorter life than lose my ability to take care of myself.”

However, respondents felt their doctors were more singularly focused on extending overall survival, even if it impacted other outcomes. Only 51.7% of patients perceived that they had the same treatment goals as their physician.

“As a result of this research, I think cancer care providers need to have more honest dialogue with all of their neuroendocrine tumor patients about treatment goals and priorities of various health outcomes from treatment,” said lead researcher Daneng Li, MD, Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. “This finding really challenges the traditional dogma that patients just want to live longer. Discussions regarding treatment goals are essential to ensure that health care teams are truly respecting patients’ desires for what they would like to get out of their treatment and are incorporating those preferences into the selection of overall treatment choices and planning.”

The study was conducted with 60 patients with advanced NETs of gastrointestinal, pancreatic, thoracic, or unknown primary origin, who were starting a new line of systemic therapy between March 2019 and August 2020. In order to drill down on the impact of age, half of the patients were between 18 and 64-years-old, while the other half were 65-and-older. The patients’ feelings were tracked via four different survey methods ranking the importance of various outcomes and other preference-assessment tools.

Both younger and older patient groups ranked maintaining independence as the most valued outcome (46.7% for each), followed by survival (36.7% for younger, 23.3% for older), reducing or eliminating pain (16.7% and 6.7%), and reducing or eliminating dizziness, fatigue, and/or shortness of breath (0% and 23.3%).

“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. For these patients especially, the impact of treatment on how they feel on a day-to-day basis could impact their decision when choosing between various treatment options,” said Dr. Li. “Ultimately, the decision for a specific treatment is certainly 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 the goals of each patient.”

“The study by Li, et. al. highlights the importance of considering the patient perspective when caring for patients with NETs,” agreed Emily Bergsland, MD, Professor of Medicine, UCSF Helen Diller Family Comprehensive Cancer Center, Director of the UCSF Center for Neuroendocrine Tumors, and Chair of the NCCN Guidelines^® Panel for Neuroendocrine Tumors, who was not involved with this research. “Using validated surveys, the investigators found that adult patients with advanced NETs strongly value maintaining independence in daily activities over survival. Importantly, only about half of patients felt they shared the same primary treatment goal as their oncologist. The findings suggest a need for further research in this area, so we can better understand how to optimize patient-provider communication and ensure integration of patient preferences in treatment planning and medical decision-making.”

To read the entire study, visit JNCCN.org. Complimentary access to “Patient-Defined Goals and Preferences Among Adults With Advanced Neuroendocrine Tumors” is available until March 10, 2023.

New Journal Leadership

JNCCN is proud to welcome new members to the executive editorial board, who will serve under longtime editor-in-chief Margaret Tempero, MD—also with UCSF—overseeing strategic planning and content for the journal. A review committee selected the five following accomplished oncologists out of a pool of more than 100 qualified applicants:

• Andrew J. Armstrong, MD, ScM, Professor of Medicine, Surgery, Pharmacology and Cancer Biology, and Director of Research, Duke Cancer Institute Center for Prostate and Urologic Cancer, and Duke University Medical Center
  • Specialties: Genitourinary oncology including bladder, kidney, prostate, and testicular cancers; clinical trials; translation medicine

• F. Marc Stewart, MD, Professor and Vice Chair, Department of Hematology & Hematopoietic Cell Transplantation, City of Hope
  • Specialties: Medical oncology, hematologic malignancies, leukemia, lymphoma, cell transplantation

• Amye J. Tevaarwerk, MD, Senior Associate Consultant, Associate Professor, Mayo Clinic Cancer Center
  • Specialties: Hematology/oncology, breast cancer, survivorship, clinic informatics, electronic health records, healthcare technology, coordination of care, quality of care

• Lauren P. Wallner, PhD, MPH, Associate Professor, Department of Internal Medicine and Epidemiology, and Co-Lead, Cancer Control and Population Sciences Program, University of Michigan Rogel Cancer Center
  • Specialties: Health services researcher, implementation science, breast and   genitourinary cancers, survivorship

• Mehran Yusuf, MD, Assistant Professor, O’Neal Comprehensive Cancer Center at UAB
  • Specialties: Radiation oncology, head and neck cancers, hematologic malignancies, thoracic cancers, skin cancers, soft tissue sarcomas, central nervous system cancers

They will join continuing Associate Editors June M. McKoy, MD, MPH, JD, MBA, Robert H. Lurie Comprehensive Cancer Center of Northwestern University; Anthony J. Olszanski, MD, RPh, Fox Chase Cancer Center; and Kanishka Sircar, MD, The University of Texas MD Anderson Cancer Center.

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About the National Comprehensive Cancer Network

The National Comprehensive Cancer Network^® (NCCN^®) is a not-for-profit alliance of leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, equitable, and accessible cancer care so all patients can live better lives. The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines^®) provide transparent, evidence-based, expert consensus recommendations for cancer treatment, prevention, and supportive services; they are the recognized standard for clinical direction and policy in cancer management and the most thorough and frequently-updated clinical practice guidelines available in any area of medicine. The NCCN Guidelines for Patients^® provide expert cancer treatment information to inform and empower patients and caregivers, through support from the NCCN Foundation^®. NCCN also advances continuing education, global initiatives, policy, and research collaboration and publication in oncology. Visit NCCN.org for more information and follow NCCN on Facebook @NCCNorg, Instagram @NCCNorg, and Twitter @NCCN