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Helping Patients with Cancer-Related Distress

Abrahamson, Kathleen PHD, RN

doi: 10.1097/01.COT.0000372179.06602.7c

Psychosocial distress is a significant problem in patients with cancer, undermining patients' coping abilities and influencing treatment decisions, compliance, quality of life, and disease progression.

Nurses can improve the recognition and management of cancer-related distress.

Studies show that nearly half of all patients with cancer report measurable levels of psychosocial distress, although the number of patients who suffer emotional turmoil or social disruption during their illness is most likely underestimated.

Clinical practice guidelines established by the National Comprehensive Cancer Network (NCCN) recommend routine screening for distress upon admission and at pivotal times in the disease process, use of approved distress assessment tools for screenings, and use of established clinical pathways based upon assessment results.

Unfortunately, these guidelines are not consistently implemented, partly because nurses have not been given the time, education, resources, or organizational support to meet their patients' needs.

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Assessment Challenging

Accurate assessment of psychosocial distress is clinically challenging. The problem is complex and sometimes difficult to identify, primarily because signs and symptoms often mimic disease symptoms and treatment adverse effects. Fatigue, disruption in sleep or activity patterns, difficulty concentrating, and changes in appetite are all indicators of psychosocial distress.

Stress measurement tools, designed for ease of use in busy clinical settings, can help nurses differentiate distress from disease effects—for example, the Distress Thermometer, a thermometer-like diagram on which patients are asked to rate their level of distress on a 0-to-10 scale. An accompanying short problem list helps patients identify practical areas of concern, such as child care, housing, or specific physical symptoms.

The benefits of such short-form tools are ease of use and the ability to capture both subjective and objective data. A drawback is that their concise nature reduces specificity of measurement. Ceiling effects can occur in certain patients (for example, in those with end-stage disease or poor prognoses) when distress levels are very high.

Short-form tools may also miss incremental increases in distress in patients who present with already high levels, then receive worsening prognoses during treatment.

Such patients' scores on repeat testing will likely cluster at 9 or 10 from the outset, and won't change with subtle but important changes in distress status. Once a patient's numerical stress rating has been established, it can be challenging for nurses to interpret this in a clinically meaningful way.

Interpretation is an area in which nurses receive little or no formal training, and there is also significant variation in expert guidance. For example, developers of the Distress Thermometer have assigned a score of 5 as the cut-off point for moderate distress. But how nurses should respond to this level of distress is often unclear—and there's even less guidance on how to respond to lower scores of 3 or 4.

Adding to these interpretive challenges is the dynamic nature of distress, which can fluctuate significantly. Distress levels are sometimes highest at the beginning of treatment, because of anticipatory anxiety, and can climb again at the end of treatment, when patients might feel more isolated as a result of fewer interactions with clinicians.

Of all the clinicians on a patient's health care team, nurses are most likely to have primary responsibility for recognizing, assessing, and treating patients' distress.

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Highly Variable

Psychosocial distress is highly variable in people with cancer; those at highest risk tend to be women, young, poor, marginally educated, or to have histories of emotional or social problems.

The need for psychosocial support from nurses also varies, and can be significantly greater for patients who live in rural and underserved areas where access to specialists and mental health professionals is limited. In these areas nurses tend to be the primary clinical contact for patients dealing with cancer and with issues of cancer survivorship.

Although nurses report having a positive impact on patients, they cite time and environmental constraints as barriers to accomplishing stress assessment and management according to NCCN guidelines.

Psychosocial support isn't easy to document. Nurses routinely use skills such as active listening to build relationships of trust with patients, which are crucial to effective management of cancer-related distress. Yet, without documentation of reductions in patients' distress through use of evidence-based methods, nurses' contributions can be easily overlooked. Further, patients with advanced disease or worsening prognoses are frequently the most distressed.22

Yet perhaps because of discomfort regarding end-of-life issues or to protect themselves emotionally, nurses report particular difficulty in approaching patients about psychosocial issues at times of disease progression.

If effective delivery of cancer care is dependent upon nurses providing emotional support to meet their patients' psychosocial needs, and if nurses are reporting difficulty in doing so—whether because of time constraints or their own hesitation—then it is likely that many patients' needs aren't being met.

Trends in cancer care aren't helping the situation. Increasingly, cancer care is delivered in outpatient settings, eliminating opportunities for nurses to interact and build rapport with patients during less stressful periods like mealtimes.

Seeing patients only during highly focused clinical appointments also leaves nurses less time to communicate with family caregivers or consult with physicians on coping strategies for patients.

A lack of authority can also handicap nurses trying to follow clinical guidelines for managing cancer-related distress. For example, they might not be able to provide severely distressed patients with timely access to mental health professionals because they are not authorized to make referrals.

The effect of such organizational barriers is compounded when nurses perceive themselves as powerless to push for changes that would enable them to fully use their nursing knowledge on behalf of patients.

This is unfortunate since research shows that patient satisfaction with care improves when nurses have time and resources to address psychosocial needs—for example, through distress-reducing interventions such as relaxation training.

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Nurses should not acquiesce to conditions that result in inadequate diagnosis and treatment of cancer-related distress. Such unresolved distress influences treatment decisions, compliance with recommended treatment, disease progression, and quality of life for patients and their families.

It is not realistic to expect individual nurses to carve out the time and single-handedly obtain the resources necessary to meet clinical guidelines for stress assessment and treatment. Rather, a stronger research base is needed to drive the organizational changes necessary to support appropriate nursing response and stimulate innovation.

The goal is not to replace the emotional support that nurses routinely provide to their patients, but rather to strengthen clinical practice and improve outcomes through a more evidence-based approach.

Adapted from American Journal of Nursing 2010;110(4):67-69.

© 2010 Lippincott Williams & Wilkins, Inc.
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