Cancer care provides an array of biomedical treatment, but it must also address the psychological and social problems associated with the illness. The cancer experience can have a life-changing impact on many individuals, including the need to accept loss, lack of control in some situations, and fear of recurrence. Psychosocial problems created by or exacerbated by the diagnosis of cancer can include depression and other emotional problems; lack of information or skills needed to manage the illness; lack of transportation or other resources; and disruptions in work, school, and family life. Distress encompasses the emotional, physical, and psychological aspects of facing a cancer diagnosis and treatment.
The National Comprehensive Cancer Network (NCCN) defines distress as “a multifactorial unpleasant emotional experience of a psychological (cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment.”1 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. To deliver high-quality cancer care, patients’ psychosocial needs must be addressed and tools/resources/support services provided to improve patient outcomes.
A failure to acknowledge and measure distress can lead to poorer outcomes, including decreased patient adherence. Emotional distress is associated with decreased adherence to treatment, diminished quality of life (QOL), worse survival, higher medical costs, and overall greater burden on the medical system. Studies have shown depression to be a common psychological symptom experienced by patients with cancer. If left untreated or undiagnosed, distress may affect QOL. Many studies confirm that distress is often overlooked and that many patients do not receive appropriate screening or treatment. Bultz and Johansen2 found that unrecognized depression and anxiety can lead to increased use of emergency departments in an attempt to get relief from distress-related symptoms. This places additional financial burden on not only the patient but the healthcare system as well.
In 2007, the Institute of Medicine (IOM) released Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs,3 a report identifying the seriousness of unmet psychosocial needs faced by patients with cancer and their families. One recommendation was for cancer programs to include distress screening as part of the assessment. The IOM report emphasizes the importance of screening patients for distress and psychosocial health needs as a critical first step to providing high-quality healthcare. It recommends screening as a part of standard clinical care and as a tool for promoting effective patient-provider communication, as well as to support patients by providing personalized information, identifying strategies to address psychosocial needs, providing emotional support, and helping patients manage their illnesses and health.
Building upon this, the American College of Surgeons Commission on Cancer (CoC) required accredited cancer programs to develop a process for distress screening by 2015.4 CoC Standard 3.2 incorporates distress screening into routine cancer care. The CoC specifies that patients must be screened for distress at least once during a pivotal visit when patients are at greatest risk for distress, such as upon diagnosis, a pre-op or post-op surgical visit, consultation with an oncologist, initiation of chemotherapy or radiation therapy, and transition into either survivorship or hospice care. Periods of increased vulnerability for distress among cancer patients may also include finding a suspicious symptom, during diagnostic workup, awaiting treatment, changing treatment modality, end of treatment, discharge from hospital following treatment, medical follow-up and surveillance, treatment failure, recurrence/progression, advanced cancer, and end of life.
The NCCN created guidelines for distress management. The NCCN Distress Thermometer was developed in 2007 as a visual analog tool for patients to indicate their distress level. The Distress Thermometer is designed to screen for distress and is not a diagnostic tool for depression or anxiety. Potential sources of distress are listed for patients to self-identify. This single-page tool can facilitate conversations between patients and healthcare providers to better elicit what is contributing to patient concerns and how these issues can be effectively resolved. Asking patients, “How is your stress today on a scale of 1 to 10” opens a dialogue with the oncologist or navigator for a discussion of emotions that is acceptable.
According to the NCCN guidelines, patients should be screened during the initial visit and then as clinically indicated throughout the treatment. Scores of 4 or higher suggest a level of distress that has clinical significance. If the patient’s distress is mild (score is <4), the primary oncology team may choose to manage the concerns by usual clinical support management. If the patient’s distress level is 4 or higher, a member of the oncology team looks at the problem list to identify key issues of concern and asks further questions to determine to which resources (mental health, social work and counseling, or chaplaincy services) the patient should be referred to.
The primary objective/reason for screening for psychosocial distress along the cancer continuum is to address patients’ perception of QOL. Effective psychosocial care, consisting of a multidisciplinary team approach, has been shown to positively influence patient outcomes and QOL. The NCCN Distress Thermometer has a secondary benefit of connecting many patients to services that might not otherwise have been identified. Potential benefits of distress screening are that it provides patients an opportunity to partner with their healthcare team, overcomes patients’ reluctance to ask for help, destigmatizes the issue and allows patients to share their vulnerabilities, and ensures timely referral to supportive services. Per CoC Standard 3.2, licensed mental health professionals and certified chaplains experienced in psychosocial aspects of cancer should be readily available as staff members or by referral.
Increasing evidence suggests that distress screening alone is not sufficient to improve patient outcomes; another critical component is appropriate, timely, and personalized follow-up referrals. Navigators are instrumental in the development and implementation of a plan for psychosocial health services in their cancer program that supports patients (by providing personalized information, identifying strategies to address psychosocial needs, providing emotional support, helping patients manage their illness and health), links patients and families with psychosocial services, and coordinates psychosocial and biomedical care.
Common barriers to care include lack of social support, financial and insurance concerns, and problems with healthcare communication. Navigators can focus on resolving barriers to care, which can be assessed during interviews with patients, and gathering data on psychosocial, financial, and practical issues. Regular interaction with navigators allows periodic evaluation of the success of intervention to reduce barriers. Clinical health outcomes measurement should include assessment of the psychosocial domain (QOL and patient/family satisfaction) for the continuous evaluation of the navigation program.
Acknowledgment of the supportive role of navigation in addressing all potential concerns, not just coordination of care and side effect management, should help to alleviate distress later if issues arise. Patients, families, and treatment teams should be informed that management of distress is an integral part of total medical care and be provided with appropriate information about psychosocial services in the treatment center and the community. Navigators can strengthen physical and psychosocial adjustment to a cancer diagnosis by identifying and promoting effective coping strategies.
AONN+ Psychosocial Support Services and Assessment Competencies
- Distress screening
- Strategies for coping: disease, treatment, distress/anxiety
- Referrals to psychosocial support and resources
- National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology. (NCCN Guidelines). Distress Management. Version 1.2014. www.nccn.org/professionals/physician_gls/pdf/distress.pdf.
- Bultz BD, Johansen C. Screening for distress, the 6th vital sign: where are we, and where are we going? Psychooncology. 2011;20:569-571.
- Institute of Medicine. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Washington, DC: The National Academies Press; 2007.
- American College of Surgeons. Commission on Cancer Standards 2015. Cancer Program Standards 2012. Version 1.2.1. Ensuring patient-centered care (educational standards). www.facs.org/quality-programs/cancer/coc/standards. 2014.
NCCN Distress Thermometer. www.nccn.org/patients/resources/life_with_cancer/pdf/nccn_distress_thermometer.pdf.