Psychosocial Oncology

Emotional distress in patients with cancer: the sixth vital sign

Barry D. Bultz, PhD, CPsych1 and Jimmie C. Holland, MD2
Department of Psychosocial Resources, Tom Baker Cancer Centre/Alberta Cancer Board, and Department of Oncology, Faculty of Medicine, University of Calgary, Calgary, Alberta, Canada 2 Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, NY
1

As the incidence of cancer continues to rise, so too will the rate of emotional distress in cancer patients. Policy makers, hospital administrators, and oncologists must begin to recognize emotional distress as an essential component of patient care, one that requires routine detection, monitoring, and treatment. There are both clinical and economic benets to addressing the psychosocial needs of these patients.

s more patients become survivors and more live with cancer as a chronic disease, the importance of a patient-centered approach to psychosocial care grows. The most signicant advance in cancer treatment in the past decade has been in psychosocial care, reported Dr. David Beatty, Executive Director of the National Cancer Institute of Canada in 1993.1 However, emotional care of the cancer patient still has received only minor recognition within the formal cancer care system. Its evident that this policy must change and the issue addressed. In June 2004, the Canadian Strategy for Cancer Control2 took a major step in the right direction by supporting the proposition that emotional distress become the sixth vital sign to be checked routinely, along with pulse, respiration, blood pressure, temperature, and pain. Scope of the problem For patients and their families, there are signicant emotional consequences to the diagnosis and treatment of cancer. Despite treatment advances, cancer is still often considered synonymous with death, pain, and suffering.3 Research has demonstrated that across the trajectory of the illnessfrom the time of diagnosis to treatment, termination of treatment, survivorship, or recurrence and palliationthe incidence of emotional distress in North American patients ranges from 35% to 45%.46 Up to 58% of patients in palliative care may experience signicant levels of emotional distress.7 In a Jordanian sample of cancer inpatients, the
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prevalence of distress was 70%.8 Similar overall rates are reported in other parts of the Middle East,911 several European countries,1214 South America,15 and Asia.16,17 Large studies that screened for distress in cancer patients at Johns Hopkins in Baltimore, MD,4 and the Tom Baker Cancer Centre in Alberta, Canada,5 found high levels of fatigue (in 49% of all patients), pain (26%), anxiety (24%), and depression (24%), along with signicant nancial hardship.

A cancer diagnosis and treatment can result in signicant emotional consequences for patients and their families. Treating emotional distress must be viewed as an integral part of quality patient care. Like other vital signs, levels of emotional distress should be routinely evaluated during all patient visits. When the psychosocial aspects of cancer care are neglected, a practices nancial and stafng burdens increase.

Manuscript received January 14, 2006; accepted March 23, 2006. Correspondence to: Barry D. Bultz, PhD, CPsych, Director, Department of Psychosocial Resources, Tom Baker Cancer Centre and Faculty of Medicine, University of Calgary, 2202 - 2nd Street Southwest, Calgary, Alberta, T2S-3C1, Canada; telephone: 403355-3205; fax: 403-355-3206; bdbultz@ucalgary.ca.
Commun Oncol 2006;3:311314 2006 Elsevier Inc. All rights reserved.

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The high cost of neglect Despite the acknowledgment by oncologists and administrators of the importance of the psychosocial side of cancer, there has been little effort to modify clinical practice, expand hospital budgets to pay for these services, or implement policy changes for third-party coverage of this critical component of patient care. In Canada, where healthcare is publicly funded and delivered, a 1999 survey of provincial cancer agencies found that less than 3% of the operating dollars of a cancer center were channeled to psychosocial care of cancer patients, as compared with 5% for cleaning services.18 In the United States, most cancer care has been moved from the hospital to the clinic, but the psychosocial services in the hospital have not been moved to these outpatient facilities, and new psychosocial counseling positions have not been added in most places. This situation is largely due to poor reimbursement from public and private sources for outpatient mental health and social services. Ofce practices today cannot generate the funds to support the salaries of such staff without the use of grants or philanthropy. In a resource-rich country like the United States, this is a policy decision that must be examined. Two events suggest progress. In June 2004, the US Presidents Cancer Panel issued this statement: The Federal government should implement comprehensive health care reform, whose provisions should include coverage for psychosocial services, both during and after treatment, and reimbursement for a range of follow-up care, including that provided by nonphysicians. In the 2005 Appropriations Bill,19 $1 million was allocated to perform a study, likely by the Institute of Medicine, National Academy of Sciences, to examine the barriers to psychosocial services of patients with cancer. Such moves by the Federal
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government are encouraging. Many insurance companies in the United States and healthcare administrators in Canada say the system cannot afford to pay for this soft side of cancer care. We suggest that this is not the case. Simply stated, we cannot afford to ignore the problem, because, in fact, nancial and human resource (stafng) burdens become greater when these aspects of care are neglected. The literature is clear: When the emotional needs of cancer patients remain untreated, a high prevalence of emotional distress is the norm in cancer populations globally. Patients who are distressed demand more time, make more phone calls, and are seen to frustrate busy doctors and nurses more than those who are not distressed. They often turn to emergency rooms, or they telephone oncologists ofces to address symptoms caused by distress.20 They utilize limited resources to relieve anxiety and depression, which often have not been diagnosed or treated. As a result, signicant clinical and nancial burdens are placed on patients, their families, and the health care system. Benets of care Despite the fact that many clinical studies have demonstrated patients benet from psychosocial care,21,22 less than 5% of distressed patients in busy clinics are recognized and receive any psychosocial treatment. Studies have also demonstrated that receiving timely psychosocial care can be had without increased cost.23 In a randomized trial in Canada, Simpson et al showed a 25% decrease in billings to the medical system as a result of psychosocial intervention in breast cancer patients.24 A meta-analysis of 90 studies by Chiles et al showed that medical costs were offset when psychosocial care in medically ill patients was improved.25 Given that the World Health Organization estimates the incidence of cancer will double within the next

15 years in developed countries, correspondingly high prevalence rates of psychosocial and emotional distress can be expected.26 However, to put such needs of patients squarely at the center of the healthcare model involves a fundamental shift in our approach to patient care. It is time for policy makers, hospital administrators, and oncologists to view emotional distress as an essential component of patient care the sixth vital signand therefore routinely screen, monitor, and treat its symptoms.27 Screening approaches Over a 2-year period, beginning in 1998, the National Comprehensive Cancer Network (NCCN), through a multidisciplinary panel, developed the rst set of standards and clinical practice guidelines for psychosocial care in cancer.28 Because all major disciplines involved in clinical care (oncology, nursing, psychiatry, psychology, chaplaincy, social work, and patient advocacy) took part in this panel, it was both highly effective and practical in its approach to improving care. The panel focused on the ambulatory setting, where most cancer care is given today. The NCCN panel chose the word distress to describe the psychological, social, and spiritual (nonphysical) aspects of care because it carries no stigmatizing connotations and because patients feel comfortable with it. How much distress is a normal part of cancer? Distress extends from normal problems such as fears, worry, and sadness to disabling problems such as true depression, generalized anxiety, panic, isolation, or a spiritual or existential crisis. Levels of emotional distress require routine evaluation during all patient visits. The NCCN practice guideline has provided an algorithm (Figure 1) to help quickly identify patients with signicant distress. Like the 010 scale for the assessment of pain, the fth vital sign,29 a visual analog screening approach helps pawww.CommunityOncology.net

Emotional distress in patients with cancer

PSYCHOSOCIAL ONCOLOGY

tients rate their distress (Figure 2). A score of 45 or higher is a trigger for further evaluation or referral to a psychosocial or supportive care service. The distress thermometer is accompanied by a problem list (Figure 2), on which patients can mark the nature and source of their distress (physical, social, psychological, or spiritual); in this way, the appropriate referral discipline (eg, mental health, social work, pastoral counseling) can be identied. Patients have found this approach acceptable, and physicians have found that it serves as a useful checklist to prompt and guide questions. Jacobsen and colleagues have validated this rapid screen in ambulatory settings.30 Physicians and nurses must be trained to use rapid screening methods routinely to ensure that patients are asked about their level of distress at each visit and at all stages of illness. The American Psychosocial Oncology Society offers four free online lectures for nurses on using the distress thermometer (www.apos-society.org). The NCCN Panel has developed standards for psychosocial care and management of distress, which, for the rst time, establish a minimal set of quality measures for recognizing and managing distress31: Distress should be recognized, monitored, documented, and treated promptly at all stages of disease. All patients should be screened for distress during their initial visit, at appropriate intervals, and as clinically indicated, especially with changes in disease status (ie, remission, recurrence, or disease progression). Screening should identify the level and nature of the distress. Distress should be assessed and managed according to clinical practice guidelines. Conclusion It makes ethical, emotional, and economic sense to recognize that the peoVolume 3/Number 5

FIGURE 1 Algorithm for identication of signicant distress.*

FIGURE 2 Screening tools for measuring distress.*

* Reproduced with permission from The NCCN 1.2005 Distress Management Guideline, The Complete Library of NCCN Clinical Practice Guidelines in Oncology [CD-ROM]. Jenkintown, Pa: National Comprehensive Cancer Network, Mar 2006. To view the most recent and complete version of the guideline, go online to www.nccc.org. These Guidelines are a work in progress that will be rened as often as new signicant data become available. The NCCN Guidelines are a statement of consensus of its authors regarding their views of currently accepted approaches to treatment. Any clinician seeking to apply or consult any NCCN guideline is expected to use independent medical judgment in the context of individual clinical circumstances to determine any patients care or treatment. The National Comprehensive Cancer Network makes no warranties of any kind whatsoever regarding their content, use, or application and disclaims any responsibility for their application or use in any way. The Guidelines are copyrighted by the National Comprehensive Cancer Network. All rights reserved. These Guidelines and illustrations herein may not be reproduced in any form for any purpose without the express written permission of the NCCN.

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ple part of cancer care is vital to a wellmanaged and compassionate cancer system.18 Neglecting emotional distress creates a gap in comprehensive quality care. Patients need to have these symptoms addressed, evidence to support the clinical benet of doing so is obvious, and the potential for cost-effectiveness is apparent. Now it only remains for practitioners to urge policy changes at the national level and see that they are implemented.
References

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rent breast cancer: anxiety, depression, PTSD. Psychooncology 2004;13(suppl 4):S66. 11. Montazeri A, Sajadian A, Fateh A, Haji-Mahmoodi M, Ebrahimi M. Factors predicting psychological distress in cancer patients. Psychooncology 2004;13(suppl):S62. 12. Gil F, Travado L, Tomamichel M, Grassi L. Visual analogue scales (VAS) and hospital anxiety depression (HAD) scale as tools for evaluating distress in cancer patients: a multicentre southern European study. Psychooncology 2003;12(suppl 4):S257. 13. Dolbeault S, Mignot V, Gauvain-Piquard A, Mandereau L, Asselain B, Medioni J. Evaluation of psychological distress and quality of life in French cancer patients: validation of the French version of the memorial distress thermometer. Psychooncology 2003;12(suppl 4):S225. 14. Mehnert A. Prevalence of post-traumatic stress disorder, anxiety and depression in a representative sample of breast cancer patients. Psychooncology 2004;13(suppl):S62. 15. Santos FRM. Symptoms of post-traumatic stress disorder in patients with malignant hematologic disease. Psychooncology 2004;13(suppl):S67. 16. Fielding R, Lam WWT, Ho E. Factors predicting psychological morbidity in Chinese women following breast cancer surgery. Psychooncology 2004;13(suppl):S53. 17. Shimizu K, Akechi T, Okamura M, Akizuki N, Uchitomi Y. Feasibility and usefulness of the distress and impact thermometer as a brief screening tool to detect psychological distress in clinical oncology practice. Psychooncology 2004;13(suppl):S68S69. 18. Bultz BD. Changing the face of cancer care for patients, community and the health care system. Commission on the Future of Health Care in Canada. Report, 2001. 19. US House of Representatives Conference Report. 2004. Available at: www.house. gov/rules/h4818crfulltext.htm. Accessed January 24, 2006. 20. Carlson LE, Bultz BD. Efcacy and medical cost offset of psychosocial interventions in cancer care: making the case for economic analyses. Psychooncology 2004;13:837 849. 21. Ashbury FD, Findlay H, Reynolds B, McKerracher K. A Canadian survey of cancer patients experiences: are their needs being met? J Pain Symptom Manage 1998;16:298306. 22. Newell SA, Sanson-Fisher RW, Savolainen NJ. Systematic review of psychological

therapies for cancer patients: overview and recommendations for future research. J Natl Cancer Inst 2002;94:558584. 23. Koocher GP, Curtiss EK, Pollin IS, Patton KE. Medical crisis counseling in a health maintenance organization: prevention intervention. Professional PsychologyResearch and Practice 2001;32:5258. 24. Simpson JS, Carlson LE, Trew M. Effect of group therapy for breast cancer on healthcare utilization. Cancer Pract 2001;9:19 26. 25. Chiles JA, Lambert MJ, Hatch AL. The impact of psychological interventions on medical cost offset: a meta-analytic review. Clin Psychol 1999;6:204220. 26. World Health Organization. Executive Summary National Cancer Control Programmes: Policies and Managerial Guidelines. 2nd ed. Geneva: World Health Organization; 2002:XII. 27. Bultz BD, Carlson LE: Emotional distress: the sixth vital sign in cancer care. J Clin Oncol 2005;23:64406441. 28. Holland JC. Update: NCCN practice guidelines for the management of psychosocial distress. Oncology (Huntingt) 1999;13:459 507. 29. Berry PH, Chapman CR, Covington EC, et al, eds. Pain: current understanding of assessment, management and treatments. Vol 29. National Pharmaceutical Council and the Joint Commission for the Accreditation of Healthcare Organizations. Reston, Va; 2001. 30. Jacobsen PB, Donovan KA, Trask PC, et al. Screening for psychologic distress in ambulatory cancer patients. Cancer 2005;103:1494 1502. 31. Holland JC, Anderson B, Distress management clinical practice guidelines in oncology. J Natl Compr Canc Netw 2003;1:344374.

ABOUT THE AUTHORS Afliations: Dr. Bultz is the director in the

Department of Psychosocial Resources, Tom Baker Cancer Centre/Alberta Cancer Board and Chief and Adjunct Professor Division of Psychosocial Oncology in the Department of Oncology, University of Calgary, Alberta, Canada. Dr. Holland is the Wayne Chapman Chair in Psychiatric Oncology and attending psychiatrist in the Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, NY. Conicts of interest: None disclosed.

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