New Supportive Care Resources from NCCN Help Patients with Cancer Confront Distress
New NCCN Guidelines for Patients®: Distress available on NCCN.org/patients
[FORT WASHINGTON, PA – March 16, 2017] — All patients with cancer experience some level of distress associated with their cancer diagnosis and the effects of the disease and its treatment—regardless of the stage of disease. Not only does distress effect a patient’s mental and psychosocial well-being, but because distress is a risk factor for non-adherence, uncontrolled distress can have a significant impact on a patient’s overall survival.
And yet – many patients don’t feel comfortable talking about their anxiety, family problems, or other issues with their oncologist.
Empowering Patients through Education
To empower patients confronting distress after a cancer diagnosis, the National Comprehensive Cancer Network® (NCCN®) has published the NCCN Guidelines for Patients® and NCCN Quick Guide™ for Distress through funding from the NCCN Foundation® and Good Days, a patient advocacy organization providing financial assistance to patients so that they do not have to choose between access to medicine they need and affording everyday living. These resources are available free of charge at NCCN.org/patients and on the NCCN Patient Guides for Cancer mobile app.
“NCCN was a pioneer in understanding the central role of distress in overall patient management in oncology,” said Jimmie C. Holland, MD, the Wayne E. Chapman Chair in Psychiatric Oncology at Memorial Sloan Kettering Cancer Center and Founding Chair of the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) Panel for Distress Management. “We are proud to continue that tradition through the publication of these patient tools that will further assist patients in identifying the symptoms of distress and empower them to seek help to manage them.”
In addition to her role with NCCN, Dr. Holland, a pioneer in psycho-oncology, is the Founding President of the American Psychosocial Oncology Society (APOS), which brings together professionals from all disciplines working in psychosocial oncology so that patients affected by cancer have access to quality psychosocial care to optimize health outcomes. APOS has endorsed the NCCN Guidelines for Patients®: Distress.
Meeting National Requirements
In 2015, the American College of Surgeons (ACS) began to require cancer centers to have in place a process for distress screening in all patients diagnosed with cancer. Many had already been relying on the widely-used NCCN Distress Thermometer, which was first created in 1997 as part of the NCCN Guidelines for Distress Management. Similar to the pain scale used in various areas of medicine, the distress thermometer allows patients to self-identify their stress level from zero to 10, with 10 being an extreme level of distress. Under the guidelines, patients reporting above a “4” should be referred to supportive care that will best serve their needs.
As described in the NCCN Guidelines for Patients®: Distress, the NCCN Distress Thermometer, which meets the ACS Commission on Cancer’s requirements, is presented with a “problem list” where patients can identify sources of distress from the following categories:
- Practical Problems
- Family Problems
- Emotional Problems
- Spiritual/Religious Concerns
- Physical Problems
“In patients with cancer, distress encompasses far more than anxiety about treatment and prognosis,” says Dr. Holland. “Encouraging patients to identify and express the sources of distress in their lives will ultimately improve their psychosocial and physical well-being. My hope is that one day, all oncologists will post the NCCN Distress Thermometer in their examination rooms just as ophthalmologists have the eye chart. Discussion of distress should be a routine part of the patient visit.”
Today, the NCCN Distress Thermometer is accessible in the NCCN Quick Guide™ sheet for Distress.
“The moment a patient is diagnosed with cancer, distress is likely to begin to surface,” says Clorinda Walley, Executive Director of Good Days. “As an advocacy organization that works directly with patients, Good Days regularly supports individuals who not only need financial resources, but require the right information that will aid their specific health care situation. The NCCN Guidelines for Patients: Distress empowers cancer patients so that they may construct a holistic path to wellness.”
A Full Library of Patient Resources
NCCN Guidelines for Patients, patient-friendly adaptations of the NCCN Guidelines, are easy-to-understand resources based on the same clinical practice guidelines used by health care professionals around the world to determine the best way to treat a person with cancer. Each resource features unbiased expert guidance from the nation’s leading cancer centers designed to help people living with cancer understand and discuss their treatment options with their providers.
NCCN Guidelines for Patients and NCCN Quick Guide™ sheets—one-page summaries of key points in the patient guidelines—are written in plain language and include patient-friendly tools, such as questions to ask your doctor, a glossary of terms, and medical illustrations of anatomy, tests, and treatment. NCCN Guidelines for Patients and NCCN Quick Guide™ sheets DO NOT replace the expertise and clinical judgment of the clinician.
NCCN currently offers NCCN Guidelines for Patients for the following: Brain, Breast, Colon Distress, Esophageal, Kidney, Non-Small Cell Lung, Ovarian, Pancreatic, Prostate, and Stomach Cancers; Acute Lymphoblastic Leukemia; Adolescents and Young Adults with Cancer; Chronic Lymphocytic Leukemia; Chronic Myelogenous Leukemia; Hodgkin Lymphoma; Lung Cancer Screening; Malignant Pleural Mesothelioma; Melanoma; Multiple Myeloma; Myelodysplastic Syndromes; Nausea and Vomiting; Non-Hodgkin’s Lymphomas; Soft Tissue Sarcoma; and Waldenström’s Macroglobulinemia.
The NCCN Guidelines for Patients and NCCN Quick Guide™ sheet for Distress are available to download for free from NCCN.org/patients and on the NCCN Patient Guides for Cancer mobile app.
NCCN Guidelines for Patients®: Distress will be available at the following Conferences this month:
About NCCN Foundation
NCCN Foundation® was founded by the National Comprehensive Cancer Network® (NCCN®) to empower people with cancer and advance oncology innovation. NCCN Foundation supports people with cancer and their caregivers at every step of their treatment journey by delivering unbiased expert guidance from the world’s leading cancer experts through the library of NCCN Guidelines for Patients® and other patient education resources. NCCN Foundation is also committed to advancing cancer treatment by funding the nation’s promising young investigators at the forefront of cancer research, initiating momentum in their careers and furthering the betterment of patients through their groundbreaking innovations. For more information about NCCN Foundation, visit http://www.nccnfoundation.org.
About Good Days
Good Days is a national, independent 501(c)(3) non-profit charitable organization that provides financial assistance to patients so that they do not have to choose between access to medicine they need and affording everyday living. Since 2003, Good Days has provided more than 800,000 grants and helped more than 500,000 people with access to healthcare resources. For more information about Good Days, visit http://www.mygooddays.org
About American Psychosocial Oncology Society (APOS)
APOS is the only multidisciplinary organization in the United States dedicated to researching and treating the psychosocial aspects of cancer. For more information go to www.apos-society.org.
About the National Comprehensive Cancer Network
The National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 27 of the world’s leading cancer centers devoted to patient care, research, and education, is dedicated to improving the quality, effectiveness, and efficiency of cancer care so that patients can live better lives. 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 health care delivery system. As the arbiter of high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers.
The NCCN Member Institutions are: Fred & Pamela Buffett Cancer Center, Omaha, NE; Case Comprehensive Cancer Center/University Hospitals Seidman Cancer Center and Cleveland Clinic Taussig Cancer Institute, Cleveland, OH; City of Hope Comprehensive Cancer Center, Los Angeles, CA; Dana-Farber/Brigham and Women’s Cancer Center | Massachusetts General Hospital Cancer Center, Boston, MA; Duke Cancer Institute, Durham, NC; Fox Chase Cancer Center, Philadelphia, PA; Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT; Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance, Seattle, WA; The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD; Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL; Mayo Clinic Cancer Center, Phoenix/Scottsdale, AZ, Jacksonville, FL, and Rochester, MN; Memorial Sloan Kettering Cancer Center, New York, NY; Moffitt Cancer Center, Tampa, FL; The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute, Columbus, OH; Roswell Park Cancer Institute, Buffalo, NY; Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine, St. Louis, MO; St. Jude Children’s Research Hospital/The University of Tennessee Health Science Center, Memphis, TN; Stanford Cancer Institute, Stanford, CA; University of Alabama at Birmingham Comprehensive Cancer Center, Birmingham, AL; UC San Diego Moores Cancer Center, La Jolla, CA; UCSF Helen Diller Family Comprehensive Cancer Center, San Francisco, CA; University of Colorado Cancer Center, Aurora, CO; University of Michigan Comprehensive Cancer Center, Ann Arbor, MI; The University of Texas MD Anderson Cancer Center, Houston, TX; University of Wisconsin Carbone Cancer Center, Madison, WI; Vanderbilt-Ingram Cancer Center, Nashville, TN; and Yale Cancer Center/Smilow Cancer Hospital, New Haven, CT.
Clinicians, visit NCCN.org. Patients and caregivers, visit NCCN.org/patients. Media, visit NCCN.org/news