Patients and doctors agree on treatment goals only half the time, according to JNCCN study on people with neuroendocrine tumors
Researchers from City of Hope find only 30% of people with neuroendocrine tumors consider living longer to be their single top priority; 70% said addressing and overcoming pain, fatigue, or lack-of-function was more important than just prolonging life.
Peer-Reviewed PublicationIMAGE: JNCCN COVER, DECEMBER 2022 view more
CREDIT: NCCN
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 JNCCN—Journal of the National Comprehensive Cancer Network
More than 25,000 oncologists and other cancer care professionals across the United States read JNCCN—Journal of the National Comprehensive Cancer Network. This peer-reviewed, indexed medical journal provides the latest information about innovation in translational medicine, and scientific studies related to oncology health services research, including quality care and value, bioethics, comparative and cost effectiveness, public policy, and interventional research on supportive care and survivorship. JNCCN features updates on the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), review articles elaborating on guidelines recommendations, health services research, and case reports highlighting molecular insights in patient care. JNCCN is published by Harborside. Visit JNCCN.org. To inquire if you are eligible for a FREE subscription to JNCCN, visit NCCN.org/jnccn/subscribe. Follow JNCCN on Twitter @JNCCN.
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
JOURNAL
Journal of the National Comprehensive Cancer Network
SUBJECT OF RESEARCH
People
ARTICLE TITLE
Patient-defined goals and preferences among adults with advanced neuroendocrine tumors
ARTICLE PUBLICATION DATE
12-Dec-2022
COI STATEMENT
Dr. Li has disclosed serving as a consultant for Advanced Accelerator Applications, Ipsen Biopharmaceuticals, and TerSera Therapeutics. Dr. Chung has disclosed serving on the speakers’ bureau for Ipsen. The remaining authors have disclosed that they have not received any financial considerations from any person or organization to support the preparation, analysis, results, or discussion of this article.
City of Hope study finds that neuroendocrine cancer patients and doctors agree on treatment goals only half of the time
Among those surveyed, 70% of people with neuroendocrine tumors said they value overcoming pain, fatigue or lack of function over simply prolonging life.
Peer-Reviewed PublicationIMAGE: “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 NEW STUDY. view more
CREDIT: 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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The study was supported by the National Institutes of Health’s National Institute on Aging (R03AG064376).
About City of Hope
City of Hope's mission is to deliver the cures of tomorrow to the people who need them today. Founded in 1913, City of Hope has grown into one of the largest cancer research and treatment organizations in the U.S. and one of the leading research centers for diabetes and other life-threatening illnesses. As an independent, National Cancer Institute-designated comprehensive cancer center, City of Hope brings a uniquely integrated model to patients, spanning cancer care, research and development, academics and training, and innovation initiatives. Research and technology developed at City of Hope has been the basis for numerous breakthrough cancer medicines, as well as human synthetic insulin and monoclonal antibodies. A leader in bone marrow transplantation and immunotherapy, such as CAR T cell therapy, City of Hope’s personalized treatment protocols help advance cancer care throughout the world.
With a goal of expanding access to the latest discoveries and leading-edge care to more patients, families and communities, City of Hope’s growing national system includes its main Los Angeles campus, a network of clinical care locations across Southern California, a new cancer center in Orange County, California, and Cancer Treatment Centers of America. City of Hope’s affiliated family of organizations includes Translational Genomics Research Institute and AccessHopeTM. For more information about City of Hope, follow us on Facebook, Twitter, YouTube, Instagram and LinkedIn.
JOURNAL
Journal of the National Comprehensive Cancer Network
METHOD OF RESEARCH
Survey
SUBJECT OF RESEARCH
People
ARTICLE TITLE
Patient-Defined Goals and Preferences Among Adults With Advanced Neuroendocrine Tumors
ARTICLE PUBLICATION DATE
12-Dec-2022
Updated clinical trial reporting guidelines include patient voices to improve trial utility and transparency
A global study of outcome reporting in clinical trials leads to updated trial reporting guidelines that aim to increase impact and improve research integrity.
Peer-Reviewed PublicationIn a global study of outcome reporting in clinical trials, a research team at The Hospital for Sick Children (SickKids) has issued updated guidelines on what should be included in all trial protocols and published clinical trial reports, with the goal to improve their transparency and utility.
Clinical trials are an important stage in translating research from labs to real-world care, but when outcomes are poorly defined and reported, it can be difficult for clinicians and scientists to apply learnings from a trial to a new population. This is especially true for children and youth, who make up only 25 per cent of the population and rely on clear, consistent child health outcome reporting to make trials relevant to their needs.
“The outcomes currently reported in clinical trials often lack transparency and are highly variable,” says first author Dr. Nancy Butcher, who led the study as a Senior Research Associate in the Child Health Evaluative Sciences (CHES) program. “Our research is helping to change the world of clinical trials by providing clear guidelines for defining, measuring and analysing trial outcomes. By using this guidance, the scientific community can make research findings more widely interpretable and usable for as many children as possible.”
Currently, the Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT) 2013 Statement, and the Consolidated Standards of Reporting Trials (CONSORT) 2010 Statement, provide checklists for the development of clinical trial protocols and reporting of randomized controlled trials, respectively.
Today’s publications in a JAMA Special Communication include SPIRIT-Outcomes 2022, an extension to the SPIRIT 2013 Statement and CONSORT-Outcomes 2022, an extension to the CONSORT 2010 Statement, with detailed outcome-specific requirements.
“As the science on outcome reporting advances, our extensions will help support a global community of clinicians and researchers working to provide children with the latest evidence-based advancements in paediatric medicine,” says Butcher, who is a Cundill Scholar at the Cundill Centre for Child and Youth Depression at the Centre for Addiction and Mental Health (CAMH) and leads the Toronto Outcomes Research in Child Health (TORCH) Initiative.
Including patient voices in defining trial outcomes
This multi-year project identified nine new outcome-specific items that should be defined in all trial protocols, in addition to 17 outcome-specific items that should be addressed in all published clinical trial reports.
These updates are the first to highlight the importance of reporting how outcomes are chosen and defined, to ensure that the measured outcomes are useful to patients and clinicians.
For the first time patient and public panelists, as well as contributors such as journal editors, were engaged in the development of both extensions, alongside researchers, clinicians and the developers of SPIRIT 2013 and CONSORT 2010. Consensus on the recommendations was achieved through a three-round voting process completed by 124 panelists with expertise in clinical trials from 22 countries, followed by a global consensus meeting with patient and public partners hosted at SickKids in 2019. Together, their input determined which recommendations would be included to improve how clinical trials are planned and their results are shared.
“By defining outcomes and involving patient and non-scientific voices from the trial protocol stage, we can help ensure the outcomes used in studies and, as a consequence, the research itself are relevant to patients,” says Dr. Martin Offringa, Senior Scientist in CHES and neonatologist who co-chaired the study.
Setting the stage for individualized care
Beyond advancing research integrity, standardizing transparent outcome selection, measurement and analysis in clinical trials is an important component in the development of individualized medicine. Achieving SickKids’ vision for Precision Child Health, a movement to deliver individualized care for every patient, relies on clear data to inform novel care approaches tailored to each child, notes Offringa.
“When we think about achieving unprecedented outcomes through Precision Child Health, it’s vital to define those outcomes with input from patients and families, from the very beginning of every study,” says Offringa, who also leads the EnRICH Research Group and Network. “What clinicians define as a relevant study outcome may differ from a patient's perspective. Ensuring patient partners are involved when clinical trial outcomes are being planned can help provide a foundation for the provision of truly tailored care.”
While these guidelines represent the minimal set of reporting elements, the research team continues to work with a variety of researchers and institutions to support the development of transparent clinical trials and identify where more reporting measures are needed, such as in mental health and rare disease research where outcome reporting is highly variable.
This study was supported by the Canadian Institutes of Health Research (CIHR).
JOURNAL
JAMA
ARTICLE PUBLICATION DATE
13-Dec-2022
