Oncology professionals and organizations around the world have come to realize the diagnosis and treatment of cancer can evoke significant levels of distress for cancer patients and their families. The Institute of Medicine’s 2008 report, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs, called attention to the importance of addressing the psychological and social problems associated with cancer and that leaving these need unmet could result in “. . .additional suffering, weaken adherence to prescribed treatment, and threaten patients’ return to health.”
Recognizing the critical need to assess and address the emotional and social concerns of oncology patients, the National Comprehensive Cancer Network (NCCN) issued a consensus statement recommending distress screening and management as a standard of care within oncology health services delivery. The term “distress” is used because:
- it is less stigmatizing to patients and families than psychiatric diagnoses or psychological jargon,
- it supports an understanding that distress is a normal process which ranges from mild to debilitating, and
- it facilitates recognition that distress severity can change across the cancer continuum.
In 2012, the American College of Surgeons Commission on Cancer (CoC) added distress screening to its accreditation standards for cancer programs. These standards are designed to help accredited programs focus on patient-centered care with the goal of improving the quality of cancer care throughout the United States. Standard 3.2: Psychosocial Distress Screening states:
The cancer committee develops and implements a process to integrate and monitor on-site psychosocial distress screening and referral for the provision of psychosocial care.
To comply with this standard, cancer programs are required to screen cancer patients at least once during a pivotal medical visit over the course of treatment. The mechanism and method for distress screening is determined by the cancer program. Common approaches range from self-report patient questionnaires to clinician-administered questionnaires to clinical interview. The CoC prefers that patients are screened using standardized, validated instruments with established clinical cutoffs.
Despite this progress, distress continues to be under-detected and under-treated. When not addressed, distress has been shown to contribute to a number of negative patient outcomes including increased suffering, decreased quality of life for both patients and family members, reduced adherence with medical treatment, frequent and longer hospitalizations, and decreased survival odds.
How Big is the Problem?
It is now accepted that 25-50% of all cancer patients experience significant levels of distress.1-3 Among these patients are two sub-groups: those who meet the criteria for psychiatric illnesses such as major depression, PTSD, or adjustment disorders (up to 25% of all patients), and patients who report distress levels that do not meet criteria for a psychiatric diagnosis but experience distress that significantly interferes with quality of life and functional status (15-20% of all patients).1-3 Using the term “distress” allows cancer programs to identify patients who fall into either of these two groups and provide interventions to reduce suffering and improve quality of life. It is important to remember distress and its intensity may fluctuate over the cancer trajectory. Distress levels may increase with recurrence, advanced disease, increased pain, disability, and symptom burden.
The difficulty cancer programs are facing in screening for distress might lead to an assumption that there is a lack of screening instruments that are brief and easy to administer, score, and interpret. Fortunately, this is not the case. There are many different types of screening instruments available to cancer programs. Among those most commonly used are:
NCCN Distress Thermometer
Endorsed by the NCCN Distress Practice Guidelines panel, this tool consists of a single item asking patients to rate their distress using a vertically aligned (thermometer) visual analogue scale with scores ranging from 0 (“no distress”) to 10 (“extreme distress”). The NCCN Clinical Practice Guidelines for Distress Management added a 34-item problem checklist to the Distress Thermometer to help in identifying the source of the patient’s distress.
Edmonton Symptom Assessment Scale (ESAS)
The Edmonton Symptom Assessment Scale (ESAS) is a brief screening instrument developed for use with palliative care patients and validated with oncology patients. It consists of nine visual analogue scales for patients to rate the severity of the following nine symptoms: pain, activity, nausea, depression, anxiety, drowsiness, lack of appetite, well-being, and shortness of breath.
Screening Implementation: More Than Just a Screening Tool
For cancer care providers, selecting a screening tool and establishing a screening process are essential first steps, but they are only the beginning of developing a distress-screening program. Positive screens require an assessment by the appropriate psychosocial professional to determine the frequency, intensity, duration, and functional impact of the distress. The assessment may reveal the need for intervention and/or referral. After intervention, follow-up and further evaluation are needed ensure that the patient’s distress is minimized or eliminated.
Some cancer programs have internal professionals to assist in the assessment, intervention, and follow-up components of a distress-screening program. For example, patients might be referred to dietitians, social workers, psychologists, pharmacists, financial navigators, or specialists in spiritual care, palliative care, and rehabilitation—just to mention a few. However, even with in-house psychosocial professionals available, the procedures associated with referral, communication, and follow-up can be significantly challenging. Cancer programs that do not have oncology-trained psychosocial professionals available may work with resources in the community, including local social service organizations and universities, to develop a referral network that can help address distress.
A number of national organizations offer resources, tools, and peer-to-peer insights on support for establishing and improving cost-effective distress-screening programs for patients with cancer, including but not limited to the Association of Community Cancer Centers; American Psychosocial Oncology Society, Association of Oncology Social Work, American Society of Clinical Oncology, American Cancer Society, Leukemia and Lymphoma Society, and Cancer Support Community. Even pharmaceutical companies can provide resources for cancer patients within individual cancer centers.
The distress screening instruments should be brief; easy to administer, score, and interpret; and be non-stigmatizing to patients. Cutoff values and specific validity and reliability data should be empirically established. Distress screening is the most effective when the screening instrument is embedded within the electronic health record (EHR) and patients are screened prior to their caregiver appointments. This allows easy administration, reliable results, and immediate feedback to patients. Further, when positive screening scores create automated referrals to the appropriate psychosocial provider through the EHR, efficiency is maximized.
Finally, cancer programs need adequate staff to determine which screening instrument to use, develop the screening policies and procedures, evaluate and interpret the screening instrument, and develop the appropriate interventions and/or referrals. Anecdotally, we have found that the distress-screening process is helping us to uncover patient problems at an earlier point thus facilitating problem solving while these problems are still manageable.
- Zebrack B, Kayser K, Sundstrom L, et al. (2015) Psychosocial distress screening implementation in cancer care: An analysis of adherence, responsiveness, and acceptability. J Clin Oncol. 2015;33(10):1165-1170.
- Hegel MT, Moore CP, Collins ED, et al. Distress, psychiatric syndromes and functional impairment in women with newly diagnosed breast cancer. Cancer. 2006;107(12):2924–2931.
- Kendall J, Glaze K, Oakland S, et al. What do 1281 distress screeners tell us about cancer patients in a community cancer center? Psycho-oncol. 2011;20 (6):594-600.
Jeffrey Kendall, PsyD, is Director of Oncology Supportive Care for University of Minnesota Cancer Care. He serves on the Education Committee for the Association of Community Cancer Centers (ACCC), and served on the Advisory Committee for the ACCC Distress Screening education project, conducted in partnership with the American Psychosocial Oncology Society (APOS).
A Message from Our Sponsor
As the founding sponsor of Real World Health Care, the HealthWell Foundation is committed to helping patients get the medical treatments they need, regardless of their ability to pay. We’ve seen first-hand how financial distress can impact the health and lives of individuals and families. Cancer patients with behavioral health conditions are particularly hard hit; according to the American Society of Clinical Oncology (ASCO), patients with some forms of cancer incur $8,000 more per year in health care costs than cancer patients without behavioral health conditions.
In keeping with our mission, we are pleased to announce the introduction of a new Cancer-Related Behavioral Health Fund, specifically for treatment-related behavioral health issues in cancer. The Fund provides financial assistance to individuals with a diagnosis of cancer to help with cost-shares (deductibles, coinsurances and copayments) for covered services rendered by behavioral health providers (psychiatrists, psychologists, clinical counselors, and licensed social workers).