Psychosocial distress is a common experience for patients with cancer, but the characteristics and impact of that distress can be decidedly unique. The Distress Thermometer, developed by the National Comprehensive Cancer Network (NCCN), is a free resource to help clinicians identify cancer patients who need help managing psychosocial distress. The NCCN recently announced that the Distress Thermometer is now available in 46 languages as part of ongoing efforts to make NCCN guidelines and products more accessible to patients and providers who do not speak English.
"The Distress Thermometer provides a way to quickly and easily determine a patient's level of distress, so that we can get them to the resources they need," said Benjamin W. Brewer, PsyD, a clinical psychologist who is a panel member of the NCCN Guideline for Distress Management. Brewer is Director of Clinical Psychology and Counseling in the Division of Hematology at the University of Colorado Anschutz Medical Campus; he is also affiliated with the University of Colorado Cancer Center.
What Is Distress?
The term "distress" was selected by the NCCN panel that developed the first guideline for distress management in 1997. "Distress" is less stigmatizing than terms such as "psychiatric," "psychosocial," or "emotional," the NCCN guideline states. The late Jimmie C. Holland, MD, a pioneer in psycho-oncology, was the founding chairperson of the NCCN Guidelines Panel for Distress Management and was instrumental in establishing the terminology.
So what is distress? The guideline defines it as "a multifactorial unpleasant experience of a psychological (cognitive, behavioral, emotional), social, spiritual, and/or physical nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment." The definition also states that distress "extends along a continuum, ranging from common normal feelings of vulnerability, sadness, and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation, and existential and spiritual crisis."
The NCCN Distress Thermometer is presented as a line drawing of a thermometer with degree marks from 0 (no distress) to 10 (extreme distress). The NCCN definition of distress is printed above the thermometer. The patient circles the number that best reflects how much distress they have experienced in the past week, including that day. A score of 4 or higher is an indication that further evaluation and possible intervention are needed.
When administering the Distress Thermometer assessment, many facilities also incorporate a problem checklist that assists clinicians in determining how to focus any interventions. The patient is asked to check "yes" or "no" to indicate whether they are experiencing practical problems, family problems, emotional problems, spiritual/religious concerns, and/or physical problems.
Importance of 'Temperature'
The patient temperature check that is provided by the Distress Thermometer is important for many reasons. In addition to being part of a foundation for effective holistic patient care, distress screening is considered the standard of care. The American College of Surgeons Commission on Cancer includes distress screening in its accreditation standards, noting that a high percentage of patients with cancer have significant distress that is not identified during routine oncology visits. The Institute of Medicine also strongly supports distress identification and treatment. In most clinical settings that use it, the Distress Thermometer screening is performed before a patient's first visit with their primary oncologist.
"It is a growing part of oncology treatment," Brewer explained. "Even if you're dying, you are trying to live well. And in long-term survivorship, you also want to live well. By identifying and responding to distress, we can optimize cancer care for the whole person."
Health care providers across the continuum of care should view distress as an integral part of every cancer patient's health status, Brewer said. By using the Distress Thermometer and incorporating principles from the distress management guideline, providers can approach sensitive subjects and symptoms in ways that help patients feel comfortable honestly expressing their concerns and experiences.
"We know that screening for distress and then addressing these concerns can improve medical treatment. The effects of cancer itself and some treatments present difficulties that for many dramatically reduce their quality of life and cause suffering," Brewer said. "Problems like fatigue, insomnia, pain, anxiety, and depression can be treated with evidence-based approaches and compassion to improve quality of life during and after treatment.
"There are so many parts of having cancer that can impact your identity-your sense of who you are," he continued. "If part of your connection to life was your job and you cannot work, or your role as a parent or spouse is impacted due to side effects, this is often a root cause of distress."
Although public understanding of mental illness is improving, many people still experience stigma around mental health-even in the context of cancer treatment. The NCCN Distress Thermometer and Distress Management Guideline are worded to acknowledge the stigma that exists.
"The fact that we call it a distress screener rather than a mental health screener is important," Brewer said. "It is designed to be non-pathologizing, because distress when you have cancer is normal. The translation and adaptation of the distress thermometer to additional languages broadens this reach further, and we hope will help many more people be connected to resources that help them live better through their cancer treatment."
Psychologists including Brewer are focused on expanding the viewpoint for cancer treatment. "I see distress management as a critical side of cancer treatment-helping people feel better in the process of this very difficult event," he said. "We can take this on scientifically, and I think that's a piece that used to be missed and in some places is still missed. Identifying distress is just the beginning-we want to keep refining our approaches to treat it, just as we continue improving the medical options for those with cancer. It's a public health need and a mission."
Michelle Perron is a contributing writer.
Where to Access Distress Information
The Distress Thermometer and the Distress Management Guideline are accessible on the NCCN website. Free registration is required to download the guideline.
* NCCN Distress Thermometer in English: https://bit.ly/2DHkrzJ
* NCCN Distress Thermometer translations: https://bit.ly/31CpTM9
The NCCN is a not-for-profit alliance of cancer centers that develops and publishes evidence-based expert consensus recommendations for cancer treatment, cancer prevention, and cancer support. The alliance is a cancer resource throughout the world. In 2019, approximately 46 percent of the 1.2 million registered users of the NCCN website lived outside the United States, a spokesperson said.