NCCN Publishes New Resource for Selecting Best Treatment Path for Young Children With Cancerous Tumors

NCCN published its first-ever set of treatment recommendations pertaining to neuroblastoma. Neuroblastoma is a type of solid tumor cancer that typically occurs in early childhood, with the majority of cases diagnosed before age five.¹ Neuroblastoma is the most common type of solid tumor (outside of brain tumors) in children, with more than 700 cases diagnosed in the United States every year.² Research innovations have led to survival rates that are better than 90% for patients with low- and intermediate-risk neuroblastoma and around 50% for those with high-risk disease.³ Improving outcomes for patients with high-risk neuroblastoma and reducing long-term treatment effects for all patients remain areas of active research.

“Neuroblastoma is a biologically and clinically heterogeneous cancer, which creates many challenges for those treating patients with this disease,” said Rochelle Bagatell, MD, Professor of Pediatrics and Solid Tumor Section Chief at Children’s Hospital of Philadelphia; Chair of the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) Panel for Neuroblastoma. “The NCCN Guidelines were designed to assist clinicians caring for children with neuroblastoma by providing key information regarding risk stratification and by summarizing the data that have led to the current approaches to therapy. As new clinical trial results become available and as therapies evolve, we will continue to support providers by updating the guidelines over time.”

Dr. Bagatell presented an on-demand online session on the latest updates for neuroblastoma in the new NCCN Guidelines as part of the NCCN 2024 Annual Conference. Visit NCCN.org/conference to learn more.

“These new NCCN Guidelines for Neuroblastoma are the perfect platform for sharing how to think about this complicated disease and determine which categories of treatment should be considered for each individual patient,” explained Julie R. Park, MD, Chair, Department of Oncology, St. Jude Children’s Research Hospital; Vice Chair, NCCN Guidelines Panel for Neuroblastoma. “The guidelines break down how to incorporate the multidisciplinary care that is needed, such as surgery or radiation, plus specific options for chemotherapy regimens.”

There are now 87 different NCCN Guidelines, covering nearly every type of cancer, plus screening, prevention, and supportive care. The NCCN Guidelines for Neuroblastoma are the 6th to focus specifically on treating pediatric cancer.

The NCCN Guidelines have a long history of providing treatment guidance that correlates with improved outcomes across numerous cancer types. The recommendations are determined by a multidisciplinary panel of experts from NCCN’s Member Institutions using the best available evidence and are updated at least once every year. By utilizing specialists with diverse areas of expertise and geographic locations, the panels are able to make sure the recommendations are thorough, representative, and understandable—particularly for clinicians who may not see patients with neuroblastoma very often. The NCCN Guidelines are intended as a resource for care providers and coverage determinations throughout the United States and around the world.

“We are particularly concerned with figuring out how to minimize treatment where possible,” said Dr. Park. “We wanted to make it easy for providers to quickly recognize which patients can have positive outcomes while experiencing less toxicity. That means including a lot of information on diagnosis and delving into analysis for molecular drivers and aspects of immunotherapy.”

Some of the common late effects from neuroblastoma treatment can include fertility issues, growth impairment, hearing trouble, and organ dysfunction.⁴ NCCN also publishes NCCN Guidelines for Adolescent and Young Adult Oncology, which provide treatment advice geared toward younger populations across all cancer types. There are separate NCCN Guidelines for Survivorship that include additional information on mitigating the long-term impact of treatment.

All NCCN Guidelines are available with a free account at NCCN.org or via the Virtual Library of NCCN Guidelines App.

Advocating for Equitable Cancer Care: A Call to Establish Comprehensive Survivorship Programming and Enhance Genetic Testing Discussions

Two new measurements have been added to the Health Equity Report Card (HERC)—a tool for improving the quality and equity of cancer care. The new measures were put forth by a multidisciplinary working group of experts in community oncology and agreed to by the original Elevating Cancer Equity working group members who drafted the original HERC. This expansion is part of ongoing efforts to address the impact of structural and interpersonal racism as a cause of disparities in cancer outcomes in the United States. The HERC was created by the Elevating Cancer Equity collaboration of NCCN, American Cancer Society Cancer Action Network (ACS CAN), and National Minority Quality Forum (NMQF).

The HERC initially included 17 actionable practice changes designed to help providers and health care organizations identify and address discriminatory behaviors and bias in care delivery, address social determinants of health, and overcome systemic barriers to optimal care. The two added measurements are:

• • Establish comprehensive survivorship programming, including a process for continuity of care when a patient is due for discharge/transfer of care.

• • Discuss germline and somatic biomarker testing with all patients and document through medical records.

Visit NCCN.org/HERC-infographic to view all 19 practice change criteria for more equitable cancer care delivery.

“Despite advancements in cancer treatment, there remains a critical gap in survivorship care planning, leading to disparities in follow-up care after treatment completion,” explained Crystal S. Denlinger, MD, Chief Executive Officer, NCCN. “To address this disparity, health care providers should delineate a clearly outlined process for continuity of care when patients are due for discharge or transfer of care, ensuring a seamless transition and continued support for patients beyond their active treatment and/or surveillance phase.”

“Furthermore, it is imperative that discussions regarding the potential role of biomarker testing become standard practice for all appropriate patients undergoing cancer treatment,” Dr. Denlinger continued. “Germline genetic testing plays a pivotal role in identifying potential hereditary cancer risks and tailoring treatments, while somatic tumor testing can help identify treatment strategies based on the biology of a given tumor. By documenting these discussions within medical records, health care providers can ensure that every patient receives information about these crucial testing options, allowing them to make informed decisions on personalized care plans.”

A pilot program to assess the feasibility of using the HERC as a tool to improve quality and equity in cancer care was first announced in 2023 on World Cancer Day. The pilot was launched to measure equitable care practices at 5 academic cancer centers, using concrete metrics and a scoring methodology vetted by health care administrators and oncology care professionals. It has since been adapted for use in community health systems as well.

“People in marginalized communities face disproportionate barriers to accessing timely diagnoses, appropriate treatments, and supportive care services,” said Darcie Green, Executive Director, Latinas Contra Cancer, Co-Chair of the Community Working Group advising the HERC implementation process to make sure it reflects the needs of underrepresented patients seeking cancer care in the community setting. “These proactive measures are fundamental for promoting equitable health care and addressing the disparities that are far too prevalent in cancer care.”

“We know health care providers are committed to implementing strategies and initiatives to advance equity across all facets of cancer care,” said Community Working Group Co-Chair Jahan Aghalar, MD, Medical Oncologist/Hematologist, New York Cancer & Blood Specialists; Chair, Genitourinary Disease Group at OneOncology. “By sharing this tool for measuring exactly where organizations have room to improve, we help them take a step toward offering better care for all patients going forward.”

Visit NCCN.org/policy for more on NCCN’s work to improve and facilitate quality, effective, equitable, and accessible cancer care so all patients can live better lives.