On World Mental Health Day, NCCN Announced Free Updated Distress Screening Tool, Available in More Than 70 Languages
On October 10, 2022, NCCN announced an updated NCCN Distress Thermometer, available in >70 languages, to help people around the world identify and address psychosocial stressors that may raise challenges when coping with having cancer, its symptoms, or treatment. The announcement came on World Mental Health Day, an international day for raising awareness of global mental health needs and resources.
“The NCCN Distress Thermometer has been helping to normalize and encourage discussion of distress as a standard part of oncology patient visits since 1997,” said Michelle Riba, MD, MS, University of Michigan Rogel Cancer Center, Chair of the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for Distress Management. “We recently overhauled this free one-page resource to be even more user-friendly and inclusive. Distress screening should be a routine part of cancer care for everyone, everywhere. By making this free resource even easier to understand and use, as well as more accessible, we hope all people with cancer will receive the support they need in order to achieve the best possible outcomes.”
The tool includes a simple scale for indicating the amount of distress a patient is experiencing. It also features a straightforward checklist of concerns covering different domains, including:
• Physical,
• Emotional,
• Practical,
• Social, and
• Spiritual or religious.
In addition to the one-page NCCN Distress Thermometer and Problem List, there are full NCCN Guidelines for Distress Management containing evidence-based expert consensus recommendations intended for health care providers. NCCN Guidelines for Patients: Distress During Cancer Care are also available, providing the same information in an accessible format to empower patients and caregivers to participate in shared decision-making.
The updated NCCN Distress Thermometer translations are part of NCCN’s ongoing efforts to make NCCN Guidelines and associated clinical resources more accessible for non-English speakers. The NCCN Distress Thermometer and Problem List is available in 71 languages (available at NCCN.org/distress-thermometer-translations).
“On World Mental Health Day and every day, we want to uphold the fact that addressing emotional distress is a key part of patient care,” said Robert W. Carlson, MD, Chief Executive Officer, NCCN. “We hope our work helps reduce any stigma or burden, enabling these important discussions around emotional well-being.”
In August 2022, independent researchers published a study in Psycho-Oncology examining 39 peer-reviewed articles validating the use of the NCCN Distress Thermometer across 25 countries, stating, “this tool has proven to be an effective means to support initiation of the conversation.”1
Visit NCCN.org/global to learn more about free cancer care resources for different regions and languages, and join the conversation online with the hashtag #NCCNGlobal.
Reference
McElroy JA, Waindim F, Weston K, Wilson G. A systematic review of the translation and validation methods used for the National Comprehensive Cancer Network Distress Thermometer in non-English speaking countries. Psychooncology 2022;31:1267–1274.
Irish Oncology Care Platform Announces Collaboration With NCCN
The Irish-founded oncology software company, ONCOassist, announced a new agreement with NCCN to focus on integrating NCCN content to create a digital tool that will help oncology professionals around the world stay up to date with relevant clinical content about cancer care. ONCOassist is a CE-approved decision support app for oncology professionals around the world. It is currently the only oncology app on the market with regulatory approval for use in a hospital setting.
ONCOassist hosts tools and content specific to oncology and is used by >73,000 professionals across >150 countries. It is estimated that 40% of oncology healthcare professionals (HCPs) globally use ONCOassist. ONCOassist is revolutionizing the delivery of global cancer care and aiding in reaching the goal of improving the quality of patient care globally.
NCCN is a not-for-profit alliance of 32 leading cancer centers devoted to patient care, research, and education, and dedicated to improving and facilitating quality, effective, equitable, and accessible cancer care so all patients can live better lives.
By joining forces, NCCN enables ONCOassist to make key decision support information available to their users around the world, advancing their mission of helping HCPs make more-informed oncology decisions. The new agreement will allow oncology clinicians to access relevant, up-to-date tools and content at their fingertips on the ONCOassist smartphone app. ONCOassist and NCCN are working together to bring their content to oncology clinicians around the world, irrespective of their resources. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the healthcare delivery system.
According to the CDC, there were 1,752,735 new cancer cases reported in the United States in 2019 alone. The NCI reported that the rate of new cases of cancer was 442.4 per 100,000 Americans in 2020. With that in mind, the National Library of Medicine’s 2021 report on cancer case trends demonstrated a substantial reduction in cancer diagnoses following the onset of the COVID-19 pandemic. This indicates that COVID-19 may have impacted and prevented patients from being diagnosed early on. ONCOassist aims to make life easier for both oncology professionals as well as patients themselves.
When speaking about the agreement, Eoin O’Carroll, Co-Founder and CEO of ONCOassist, said, “We are thrilled to announce this opportunity to collaborate with the NCCN. This project has been in the pipeline for some time and we are very much looking forward to working together. This is an exciting step forward for ONCOassist for our work in cancer care and goal to facilitate healthcare professionals by gaining access to the right information and delivering better care to patients.”
When speaking about the collaboration, Robert W. Carlson, MD, Chief Executive Officer, NCCN, said, “Clinicians need to have frequently updated, evidence-based, expert-consensus information available at their fingertips. This collaboration will help make sure the gold standard recommendations from NCCN’s expert panels are easily accessible to the people who need them. Ultimately, this means more people with cancer will receive the kind of treatment that is most likely to lead to better outcomes.”
NCCN Guidelines for Patients Win Award for Excellence in Cancer Patient Education From CPEN
NCCN has been named winner for the 2022 Excellence in Cancer Patient Education award from the Cancer Patient Education Network (CPEN). CPEN was originally founded with the NCI to promote and provide models of excellence in patient, family, and community education across the continuum of care. This nonprofit professional organization continues to do this by bringing together educators, researchers, program managers, and others to make sure patients with cancer and their families can achieve optimum health outcomes.
NCCN was nominated for the 2022 CPEN award by Gena Cook, Director of Blue Note Therapeutics and Chair of the NCCN Foundation Board of Directors, specifically for its unique support of diversity, equity, and inclusion in breast cancer patient resources. NCCN’s free breast cancer resources for patients and caregivers include a series of NCCN Guidelines for Patients books in multiple languages, plus animated videos and expert webinars. All are available for free at NCCN.org/breast-cancer-resources.
NCCN patient resources are based on the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines), which are considered the gold standard for clinical direction and policy in cancer management and are the most thorough and frequently updated clinical practice guidelines available in any area of medicine. The evidence-based recommendations are kept up-to-date by multidisciplinary panels of experts that include patient advocates. The NCCN Guidelines for Patients contain the same unbiased expert guidance as the clinical versions, but are presented in an easy-to-read format—with clear language, charts, images, a glossary of medical terms, and suggested questions to ask during appointments—thanks to support from the NCCN Foundation.
“We are grateful to CPEN for this recognition of our work empowering patients and caregivers with the knowledge they need to advocate for their ideal cancer treatment decisions,” said Patrick K. Delaney, Executive Director, NCCN Foundation. “This honor reflects how important it is to make sure everyone can access accurate and current information in order to achieve the best possible outcomes.”
The library of NCCN Guidelines for Patients currently contains 65 different books, featuring tailored recommendations for >50 types of cancer, including breast, colon, lung, and prostate, plus supportive care topics such as managing cancer-related distress, nausea and vomiting, and special considerations for adolescents and young adults across all cancer types. There are also patient guidelines devoted to detection, prevention, and risk reduction, including the latest recommendations for colorectal, lung, and breast cancer screening.
In her nomination for the CPEN award, Cook explained, “The guidelines for breast cancer screening and diagnosis and the guidelines for breast cancer treatment address differences in cultural and individual identity—especially in relation to sex assigned at birth and gender—and take differing levels of health literacy into account. Plain language, inclusive and bias-free language, and representative photos are utilized.”
“At NCCN, we are guided by our mission to improve and facilitate quality, effective, equitable, and accessible cancer care so all patients can live better lives,” said Robert W. Carlson, MD, Chief Executive Officer, NCCN. “Patient-centered care is the best care. In order to achieve that, we must provide educational resources that meet patients where they are.”
The NCCN Guidelines for Patients were downloaded >2 million times in 2021. They are available for free digital download at NCCN.org/patientguidelines or via the NCCN Patient Guides for Cancer app. Printed editions are available for free while supplies last via NCCN’s online catalog, or for a nominal fee through Amazon.
NCCN Working With MedLive to Advance High-Quality Cancer Care in China and Worldwide
NCCN announced a new collaboration with MedLive to share NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) in China at nccnchina.org.cn. NCCN Guidelines 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 current library of 84 evidence-based, expert-consensus practice guidelines cover 97% of cancer cases affecting patients, with specific treatment recommendations for nearly every type of cancer, plus supportive care and prevention, and are updated at least once a year. There are also 65 patient-focused versions of the guidelines for patients and caregivers. All are now available at quicker in-country download speeds with a one-step registration process, also via guide.medlive.cn/NCCN on computer or the MedLive app on smartphone. These resources will also be translated into Chinese in the future.
“We are committed to making sure providers and patients have access to the most up-to-date standards in cancer care around the world,” said Robert W. Carlson, MD, Chief Executive Officer, NCCN. “At NCCN, we believe that everyone worldwide should benefit from the rapidly expanding knowledge on how to treat cancer most effectively; and we work tirelessly to make that happen. We are proud to collaborate with MedLive on this important project.”
Although NCCN is a United States–based organization, NCCN resources are accessed and utilized throughout the world. Nearly half of the 1.5 million registered users viewing NCCN Guidelines at NCCN.org or via the Virtual Library of NCCN Guidelines app are located outside of the United States. China is currently the third highest country for clinical practice guideline downloads, with >400,000 per year. This new in-country platform for guidelines is expected to increase that number significantly.
“We are happy to introduce a new home for NCCN resources in China here on our MedLive platform, providing doctors with faster access to NCCN Guidelines,” said Tian Lixin, President, MedLive. “This collaboration will help oncologists in China to reference the widely recognized NCCN Guidelines, so all patients can receive high-quality, effective, and efficient treatment according to the latest evidence-based, expert-consensus standards.”
“Both NCCN and MedLive recognize the importance of collaboration and mutual learning,” said Xin Jiangtao, Vice President, MedLive. “We are pleased to use this platform for knowledge sharing between oncology circles in Asia and the United States, ultimately improving care for patients everywhere.”
The collaboration will focus on providing the full English-language library of NCCN Guidelines on MedLive’s platform (in addition to their longtime home at NCCN.org), with Chinese translations to follow in the near future. The new website specifically for NCCN on MedLive was first announced on June 15, 2022, in a live conference hosted by MedLive. The full broadcast is available on-demand at class.medlive.cn/class/live/close/68550.
Visit NCCN.org/global to learn more about NCCN’s work to improve cancer outcomes around the world. Join the conversation online with the hashtag #NCCNGlobal.