NCCN releases new resources to improve quality of life for people with cancer

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The National Comprehensive Cancer Network® (NCCN®) is announcing new resources focused on improving quality of life for people with cancer while making sure care planning reflects individual needs and priorities. Today marks the publication of a new NCCN Guidelines for Patients®: Palliative Care, part of an ongoing expansion of supportive care resources. The new NCCN Guidelines for Patients: Fatigue and Cancer is also publishing, along with an updated book on managing Distress During Cancer Care.

The NCCN Foundation® provides funding for the NCCN Guidelines for Patients. All guides are available free-of-charge at NCCN.org/patientguidelines or via the NCCN Patient Guides for Cancer App.

People with cancer should be able to live the best life possible. That means not just treating the cancer, but also helping people cope with any symptoms or hardships-;both physical and emotional. The NCCN Foundation is committed to providing tools that encourage and normalize conversations that put the emotional, social, and spiritual needs, values, beliefs, and cultures of the person with cancer and their caregivers at the center of any care plan."

Gena Cook, CEO, Kaliper Health and Chair of the NCCN Foundation Board of Directors

"These guidelines will help enhance the quality of care and quality of life for individuals dealing with a diagnosis, and assist their families and caregivers as well," said Joanna Doran, CEO of Triage Cancer. "The experience is improved by focusing on the patient's overall health and wellbeing, not just the treatment, and helping caregivers handle the side effects of managing the disease."

The NCCN Guidelines for Patients have received numerous awards for patient information, including a recent Excellence in Cancer Patient Education from the Cancer Patient Education Network (CPEN), founded by the National Cancer Institute (NCI). Independent studies have found them to be among the most-trustworthy sources for cancer information online.

NCCN Guidelines for Patients are based on the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®)-;the gold 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 contain the same evidence-based expert consensus treatment information as the clinical versions but are written specifically for people with cancer and their caregivers. Each book includes a glossary of medical terms and suggested questions to ask during appointments.

"There are many myths and less evidence-based approaches out there that patients may hear about or read about; the NCCN Guidelines for Patients steer them towards solutions that are supported by the best available evidence," explained Catherine Jankowski, PhD, University of Colorado Cancer Center, Chair of the NCCN Guidelines® Panel for Cancer-Related Fatigue. "For instance, when it comes to managing cancer-related fatigue, the evidence is squarely in favor of the benefits of physical activity, even at low levels."

Dr. Jankowski explained that NCCN's various clinical practice guidelines for supportive care are designed in a coordinated fashion, noting, for example, that fatigue can cause distress and vice versa. Patients are sometimes surprised by how persistent cancer-related fatigue can be, and that it can arise at any time during or after treatment.

"Palliative care gives people a big picture view of what it's like to navigate the cancer care experience across the scope of care, beginning with diagnosis," said Toby Campbell, MD, MS, University of Wisconsin Carbone Cancer Center, Vice-Chair of the NCCN Guidelines Panel for Palliative Care. "This is how the care team is able to represent each individual throughout a complicated series of events. These patient guidelines will help enable difficult conversations and affirm that people with cancer can make treatment choices based on what matters to them. Palliative care is also how we navigate symptoms and make it easier for patients to 'weather the storm.'"

Dr. Campbell stressed that palliative care is an important part of comprehensive cancer care regardless of age, cancer stage, or the need for other therapies. He noted that recent studies have found that palliative care can often be delivered effectively through video visits, reducing the burden of patients needing to come into the clinic.

NCCN's series of supportive care patient guidelines also includes books focused on side-effects from treatment, such as nausea and vomiting, blood clots, anemia, and immunotherapy-related adverse events. There are also survivorship guidelines featuring healthy living recommendations and information on addressing any long-term effects from cancer. The library of patient guidelines now includes 70 books in all, including guides to prevention, detection, and treatment for nearly every type of cancer-;many are available in multiple languages.

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