Jimmie C. Holland, MD. ©Getty Images
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 affect a patient’s mental and psychosocial well-being, but because distress is a risk factor for nonadherence, uncontrolled distress can have a significant impact on a patient’s overall survival. However, 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 the NCCN Quick Guide™ for Distress through funding from the NCCN Foundation and Good Days, a patient advocacy organization providing financial assistance to patients so they do not have to choose between accessing needed medicine 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, 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, which 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 Founding President of the American Psychosocial Oncology Society (APOS), which brings together professionals from all disciplines working in psychosocial oncology, so 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 0 to 10, with 10 being an extreme level of distress. Under the guidelines, patients reporting above a 4 should be referred to supportive care, which 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 the sources of distress from the following categories: practical problems, family problems, emotional problems, spiritual/religious concerns, and physical problems.
Routine Part of Patient Visit
“In patients with cancer, distress encompasses far more than anxiety about treatment and prognosis,” said 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,” said 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 they may construct a holistic path to wellness.” ■