Study finds NCCN Guidelines for Patients listed among the most trustworthy online resources

Reviewed by James Ives, M.Psych. (Editor)Apr 21 2020

A recently-published study from researchers in Australia and South Africa found the NCCN Guidelines for Patients to be among the most trustworthy resources for patients and caregivers seeking information online about prostate cancer. The independent, peer-reviewed international study published in Current Urology examined the top 90 English-language Google results for medical information on prostate cancer, and measured reliability and transparency according to Journal of American Medical Association (JAMA) benchmarks and DISCERN criteria from the Division of Public Health and Primary Care at Oxford University. The NCCN Guidelines for Patients received highest rankings in both.

We publish the NCCN Guidelines for Patients so people with cancer and their caregivers have access to the same information as their doctors, including the latest evidence and expert consensus on the best ways to manage their cancer. This knowledge is intended to empower people with cancer to take an active role in shared decision-making, ensuring their treatment plan is truly patient-centered."

Robert W. Carlson, MD, Chief Executive Officer, NCCN

The NCCN Guidelines for Patients are based on the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines), which 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 patient guidelines are written in an easy-to-learn format and include a glossary of medical terms and suggested questions to ask during appointments. The books are available for free digital download at NCCN.org/patients or via the NCCN Patient Guides for Cancer App, with printed versions available for a nominal fee at Amazon.com. Funding for the NCCN Guidelines for Patients comes from the NCCN Foundation and its generous donors. The NCCN Foundation also collaborates with more than 100 patient advocacy groups to help deliver this vital information to patients and families.

"The NCCN Guidelines for Patients: Prostate Cancer outlines essential information about diagnosis and treatment in a comprehensible format. It serves as a foundation of knowledge as patients and families begin to discuss options with their health care provider," according to the Prostate Cancer Foundation (PCF), one of ten organizations to endorse the book, along with California Prostate Cancer Coalition (CPCC), Malecare Cancer Support, National Alliance of State Prostate Cancer Coalitions (NASPCC), National Prostate Cancer Awareness Foundation (PCaAware), Prostate Health Education Network (PHEN), Urology Care Foundation, Us TOO International Prostate Cancer Education and Support Network, Veterans Prostate Cancer Awareness, and ZERO - The End of Prostate Cancer.

In the Current Urology study, the researchers found NCCN's patient information site met all four criteria for validating the quality of information it contained according to the JAMA benchmarks--one of only 15 websites to do so. Additionally, the evaluation based on the DISCERN criteria gave NCCN a score of 76 out of 80, making it the highest ranked site of the first 90 Google search results.

"These patient guidelines are intended to augment, but not replace the information patients get from their physician," said Marcie Reeder, MPH, Executive Director, NCCN Foundation. "It can be difficult to understand complicated medical details at any time, and especially when your mind is reeling after getting a cancer diagnosis. These books give people the opportunity to absorb what's happening to them and mentally prepare at their own pace. With so many people relying on the internet for health information, we're proud to offer something that's been independently validated as reliable and trustworthy. No matter where people receive their care, they can advocate for the latest and best options currently available."

In response to the ongoing Coronavirus Disease 2019 (COVID-19) pandemic, NCCN is also helping to share essential information from NCCN Member Institutions on how to continue providing safe, optimal cancer care under current conditions. Visit NCCN.org/covid-19 for a growing list of free, downloadable resources for patients, providers, and caregivers, including a factsheet for cancer patients and tips for self-care and stress management.

The patient guidelines site had approximately 900,000 unique visitors from all over the world in 2019. Visit NCCN.org/patients to learn more or make a donation to the NCCN Foundation to support essential resources for people with cancer.