A diagnosis of cancer, its treatment, and surveillance are fraught with distress. Distress is defined by the National Comprehensive Cancer Network ® (NCCN ®) 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 is known to occur at any point along the cancer-disease trajectory: during diagnosis, during treatment, at the end of treatment, at pivotal treatment decision points, from survivorship through to end of life. 2 The severity of the distress can range 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.” 1 Most important, the impact of distress has been associated with reduced quality of life (QOL) and potentially reduced survival. 3,4
About 33% of all persons with cancer experience severe distress. 5,6 As a result of the prevalence and severity of distress, the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Distress Management recommend that all patients with cancer should be screened for distress, using a standardized tool, at their initial visit, at appropriate intervals, and as clinically indicated. 1 The time line for longitudinal screening of “appropriate intervals” has not been firmly established. 2 However, it is well recognized that appropriate intervals include times of vulnerability such as remission, recurrence, termination of treatment, and progression. 1,7 Despite efforts to improve distress screening and intervention, many institutions struggle to adhere to the NCCN Guidelines®. 8,9
In 2012, the American College of Surgeons Commission on Cancer (ACoS CoC) identified distress screening as an essential accreditation standard by 2015. 10 The standard mandates that patients be screened a minimum of 1 time at a “pivotal” medical visit (such as time of diagnosis, transitions in cancer treatment, recurrence, completion of cancer treatment, and progression of disease). In practice, most institutions typically screen at diagnosis. 2 According to the ACoS CoC, 41 VAMCs are accredited sites that will be impacted by the implementation of this standard. 10
Distress Screening Tools
A major challenge and barrier to integrating distress screening in cancer clinics is the lack of consensus on the best measurement tool in a busy ambulatory clinic. Although a number of screening tools are available for measuring cancer-related distress, they vary in efficacy and feasibility. According to Zabora and Macmurray, the perfect screening instrument for distress in persons with cancer does not exist.6 Brief screening tools demonstrate high sensitivity in identifying very distressed patients but lack specificity, resulting in false positives. 8,11 More extensive screening instruments, such as the Hospital Anxiety and Depression Scale (HADS), the Brief Symptom Inventory (BSI)-18, and the Psycho-Oncology Screening Tool (POST), have lower rates of false positives but may be more burdensome for providers, especially when considering copyright and cost. 6
Ambulatory cancer care requires a rapid screening method with high sensitivity and minimal burden. 12 The NCCN Distress Thermometer (DT) has face validity and allows for rapid screening; however, its psychometric properties are not as robust as other instru ments, such as the Center for Epidemiological Studies Depression Scale, the Hospital Anxiety and Depression Scale, Psychological Distress Inventory, or Brief Symptom Inventory. 13 Although the DT has been shown to identify clinically significant anxiety, it is not as sensitive in identifying depression. 4