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New NCCN Distress Guidelines and Tools Encourage Patients to Speak Up

TON - May 2017, Vol 10, No 3 - Conference Correspondent, NCCN News
Phoebe Starr

Orlando, FL—In recognition of the distress associated with the diagnosis and treatment of cancer, the National Comprehensive Cancer Network (NCCN) has produced several resources to help patients report their distress and cope with it. The organization has published the first NCCN Guidelines for Patients and NCCN Quick Guide for Distress. An updated Distress Thermometer is included in the NCCN Quick Guide for Distress. These resources are available at no charge at, and on the NCCN Patient Guides for Cancer mobile applications.

The Distress Thermometer is a user-friendly tool that allows patients to self-report their distress level—on a scale from 0-10, with 10 being the most severe—during the past week. On the back of the thermometer, patients can choose from a long list of problems that their distress may be related to, including practical problems (eg, child care, insurance/financial, transportation), family problems, emotional problems, spiritual/religious concerns, and physical problems, as well as citing “other” problems not included in the list. The thermometer should be filled out by the patient and brought to each visit with the care team.

All patients with cancer experience some level of distress, and these new tools will help patients deal with their concerns. It is important to address distress because, regardless of disease stage, distress affects mental and psychosocial well-being, and is a risk factor for nonadherence and uncontrolled disease. Distress can also have a significant impact on a patient’s overall survival.

“The NCCN Distress Thermometer is the most widely used and most well-validated tool to assess distress,” said Teresa DeShields, PhD, Psychologist, Siteman Cancer Center, Washington University School of Medicine, St. Louis, MO. In 2016, the NCCN recommended using this tool at every visit, “but that was aspirational,” she said.

The 2017 NCCN Guidelines for Patients incorporate physical factors that contribute to distress.

“The new guidelines acknowledge that distress is not just psychological but can stem from physical factors as well. Distress is related to quality of life and linked to survival,” Dr DeShields emphasized. Physical symptoms, such as sleeplessness, anxiety, and depression, can drive distress. Symptoms of disease and those of distress can be difficult to tease out, she said. For example, loss of appetite or sleeplessness can be symptoms of both the disease and distress.

“This guideline and the tools encourage patient reporting of distress. We want them to speak up. Patients with cancer tend to underreport their symptoms and problems. There is no biomarker or test for distress. If a patient doesn’t speak up, then we can’t be of help,” Dr DeShields continued.

“These new guidelines are fantastic!” said Ruben Mesa, MD, Professor of Medicine and Chair of the Division of Hematology & Medical Oncology, Mayo Clinic, Phoenix, AZ. Dr Mesa was present at a press conference at the NCCN 22nd Annual Conference where the new patient guideline was unveiled.

“Now we have to get patients and providers to use these materials. Providers can order these materials and give them to patients. Providers have to make a push to encourage patients to speak up about their problems,” Dr Mesa said.

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Last modified: May 17, 2017