	Over the past several decades, many advances have offered new treatment options to cancer patients and added to the ever increasing numbers of survivors. With advances in treatment, however, therapies have become more complex and have increased the long-term side effects. Several studies have documented that cancer and its treatment creates or aggravates psychosocial distress, while unresolved physical and practical problems can also add to the distress of patients attempting to complete their treatment and recovery.

	Oncology nurses know that unresolved distress can lead to additional problems, such as nonadherence to therapy

 Addressing distress concerns in patients with cancer can have a positive impact in reducing distress and improving quality of life.

	In 1999, the National Comprehensive Cancer Network (NCCN) established a panel to investigate and evaluate the issues that contribute to distress in patients with cancer. That same year they developed the first set of guidelines to screen for and treat distress in patients with cancer. The term distress was chosen because it didn’t have the stigma associated with a psychiatric diagnosis and also encompassed recognition of the physical, social, emotional, and practical issues that can contribute to anxiety and 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. 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.”

	In 2008, the need for addressing psychosocial issues and distress in cancer patients became more prominent with the publication of the Institute of Medicine (IOM) report, “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs.”

 Most recently, the American College of Surgeons Commission on Cancer incorporated a standard for distress screening into its cancer program accreditation.

	Many factors contribute to distress in patients with cancer. Several studies have evaluated the incidence of distress with a meta-analysis indicating that up to 47% of patients have a significant level of distress and, overall, approximately 30%-40% of patients have some combination of mood disorder.

 It has been further noted that the incidence of major depression increases with increasing levels of physical disability, advanced illness, and pain.

 Physical symptoms can also contribute to distress, with fatigue, sleep disturbance, and pain being the most commonly reported physical symptoms.

	More recently, distress research has evaluated the impact of caregiver burden on the distress level of the patient with cancer. The stress of caregiving can negatively impact the ability of the caregiver to provide for the needs of the patient, thereby adding to the distress of the patient with cancer.

	Distress screening should occur on the first visit and at interval visits as clinically indicated throughout the patient’s cancer journey, particularly at times when increased distress is likely. Distress for patients can include external or internal sources, such as cognitive, social, and spiritual components. Distress can present at any point during the cancer diagnosis and treatment.

	Patients are often hesitant about discussing stressful events, whether it is their own cancer diagnosis, stressful family dynamics, financial issues, or even their lack of knowledge or low education level. The NCCN guideline has incorporated a list of psychosocial distress characteristics. This list identifies patients at increased risk for distress, as well as periods of increased vulnerability for patients. Patient characteristics that increase the risk for distress can include psychiatric disorders, substance abuse disorders, poor social support, inadequate resources, communication barriers, uncontrolled symptoms, and severe comorbid illnesses.

 The NCCN further identifies periods of increased vulnerability, which can include staging and work-up, when the patient is informed of the diagnosis, when a change in treatment is indicated because of disease progression, recurrence of disease, or advancing cancer to end-of-life care, as well as discharge from the hospital, transition to survivorship, and ongoing medical surveillance. This reinforces the importance of screening on a periodic basis, because once a patient is diagnosed with cancer, he or she will likely continue to face these periods of vulnerability.

	Barriers to care can impact quality of life and increase distress in patients with cancer. Screening can identify many of these barriers so that appropriate management can be implemented; however, frequently there are barriers to providing the support indicated.

	Barriers to screening for distress can arise from the healthcare team, the healthcare system, or from the patient. Patient barriers include psychiatric disorders and the stigma that may be attached to psychological issues, substance abuse, cognitive impairment, depression with or without suicide attempt, communication/language barriers, financial limitations, insurance problems, work or transportation issues, and cultural or spiritual concerns. Patients may also be hesitant to discuss their concerns with healthcare team members for various reasons. Healthcare team/system barriers include time constraints in oncology offices, lack of knowledge on how to screen for and manage distress issues, scheduling delays, lack of community resources or lack of knowledge regarding resources, inappropriate use of specialized staff, technological factors, communication/ language barriers, and other uncontrolled factors. The time and effort required to fill out and then discuss the results of the screening tool can feel overwhelming and exhausting to patients who are already feeling fatigued.

	Regardless of the numerous barriers to distress screening, the patient needs to be assessed and evaluated both psychologically and physically in order to be treated appropriately throughout the cancer journey.

		Karen Masino, MS, CNP, ACNP-BC, AOCNP, RN,

	There are multiple evidence-based screening tools in what appears to be a trend toward the use of a simple instrument such as the distress thermometer and the distress problem checklist.

 This tool has been validated to indicate distress in patients if the score is 5 or higher on the distress thermometer.

	Other widely used tools include the Hospital Anxiety and Distress Scale (HADS)

 and instruments that have been developed for specific disease sites such as breast, as well as automated touch-screen computerized technology that appears to be at least as well accepted as a paper version.

 It is beyond the scope of this article to discuss these tools in depth. The reader is referred to Carlson et al

 for a more in-depth discussion of various tools. The ideal screening tool should be brief, and scoring results should be both simple and efficient. The tool used may evaluate distress experienced in the past day, week, or within the patient’s lifetime. Stressors, once identified, should be monitored, documented, and treated promptly.

	Building a Distress Screening and Management Program

	Screening for distress is considered only the first step in identifying factors that contribute to a poorer quality of life. Just as important as completing the screening, is having processes in place to address the issues that confront patients.

	Selecting a multidisciplinary team is recommended for implementing and monitoring distress management. While the primary oncology team— which typically consists at a minimum of an oncology physician and oncology nurses&mdash;can address many patient concerns, it is important to include other disciplines and community resources to provide the full spectrum of services patients may require; these may include therapists, social workers, nutrition services, chaplaincy services, psychiatric and mental health services, palliative care and hospice services, as well as community agencies providing support groups and assistance with practical problems such as transportation and financial concerns. Many facilities already have representation from these areas on their cancer committees. Formalizing these resources into a subcommittee of this group may be one approach in developing a distress management program.

	The team should determine the tool and the process that will be implemented to develop a distress screening and management program. The tool selected may be determined by the staff appointed to do the screening. In some facilities, a social worker may be designated to meet with the patient or may review the screening and make referrals to other professionals. In other facilities, the screening may be done as part of a routine office visit with the physician and staff, in which case a very fast tool such as the distress thermometer8 may be more appropriate for screening. The process needs to identify how the screening will be completed and at what points it will occur.

	Good communication must be a priority in addressing concerns of patients. Acknowledging the patient’s concerns and providing adequate time to explore the patient’s issues can help to develop a trusting relationship between the patient and the healthcare team and set the stage for a positive relationship in the future.

	Each facility or physician practice needs to identify available resources and staff to address and manage distress issues. It is important to emphasize that all services do not have to be housed within a facility; resources that are available by referral or connecting with a community resource also need to be included. Networking with community groups and developing partnerships with outside organizations is strongly recommended. The listing of resources should be formalized and disseminated throughout the institution and treatment facilities.

	Since distress issues can affect patients throughout the cancer trajectory, it is necessary to have the resources to address all of the issues that can cause or exacerbate distress, from diagnosis through to survivorship and into end-of-life care. Carlson et al

 outline key points for successful implementation of a distress screening program:

		Adequate time needs to be allocated to lay the groundwork.

		Gain support of hospital administrators and clinic coordinators prior to implementing screening.

		Offer appropriate training for staff involved in screening, providing services, and processing reports. Assess available support services to address psychosocial needs and physical problems to determine if additional services are needed.

		Triage guidelines and algorithms can be helpful.

		Perform ongoing evaluation, and be sure to determine whether the screening program addresses needs of the medically frail, minority, and underserved populations and those with language barriers.

	Role of the Oncology Nurse Navigator in Distress Screening

	The oncology nurse navigator (ONN) is in an ideal position to be involved in screening for distress, as well as providing management of distress issues, supporting patients as they progress through the cancer trajectory. The ONN functions as an advocate for patients, explaining disease and treatment options and linking patients with resources that will enable them to complete their treatment and maintain or improve their quality of life. The ONN also is a primary point of contact to facilitate communication and act as a liaison with the healthcare team on behalf of the patient.

	The intervention of an ONN has demonstrated a positive impact on distress scores of selected groups of patients.

 Since unresolved distress has been implicated in increased medical costs and, possibly, shortened survival,

 the impact of an ONN in lowering a patient’s distress level is an area that warrants further study.

	Nurse navigators can evaluate distress levels in patients and communicate these concerns to the healthcare team. Oncology nurses have been consistently involved in providing education to patients regarding their disease process and treatment, side-effect management, and in providing support.

	Because of the many sources of distress, the ONN can also provide interventions to help guide patients on managing their symptoms, as well as providing links to resources that can address their distress issues and help them with their coping skills.

	ONNs are key stakeholders in developing distress screening and management programs within their facilities and are active participants in interventions to provide support and improve the quality of life of patients with cancer.

			Partridge AH, Wang PS, Winer EP, Avorn J. Nonadherence to adjuvant tamoxifen therapy in women with primary breast cancer. 

			DiMatteo MR, Lepper HS, Croghan TW. Depression is a risk factor for noncompliance with medical treatment: metaâ€analysis of the effects of anxiety and depression on patient adherence. 

			Bultz B, Holland J. Emotional distresss in patients with cancer: the sixth vital sign. 

			Brown KW, Levy AR, Rosberger Z, Edgar L. Psychological distress and cancer survival: a follow-up 10 years after diagnosis. 

			Adler N, Page A. Institute of Medicine: Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Washington, DC: National Academies Press; 2008.

			Jacobsen PB, Jim HS. Psychosocial interventions for anxiety and depression in adult cancer patients: achievements and challenges. CA: 

			Breitbart W, Poppito S, Rosenfeld, B, et al. Pilot randomized controlled trial of individual meaningâ€centered psychotherapy for patients with advanced cancer. 

			National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology for Distress Management V.3.2012. 

http://www.nccn.org/professionals/physician_gls/pdf/distress.pdf

			American College of Surgeons Commission on Cancer. Cancer Program Standards 2012: Ensuring Patientâ€Centered Care. 2011. 

http://www.facs.org/cancer/coc/cocprogramstandards2012.pdf

			Mitchell AJ, Chan M, Bhatti H, et al. Prevalence of depression, anxiety, and adjustment disorder in oncological, hematological, and palliativeâ€care settings: a metaâ€analysis of 94 interviewâ€based studies.

			Sellick SM, Crooks DL. Depression and cancer: an appraisal of the literature for prevalence, detection, and practice guideline development for psychological interventions. 

			Carr D, Goudas L, Lawrence D, et al. Management of cancer symptoms: pain, depression, and fatigue.

			Sarna, L., Brecht, M. (1997). Systematic review and meta-analysis of the correlates of cancerâ€related fatigue. 

			Oh HS, Seo WS. Systematic Review and Metaâ€Analysis of the Correlates of Cancerâ€Related Fatigue. 

			Dy SM, Apostol CC. Evidenceâ€based approaches to other symptoms in advanced cancer. 

 J. 2010;16(5), 507â€13. 16. Berger AM, Visovsky C, Hertzog M, Holtz S, Loberiza FR. Usual and worst symptom severity and interference with function in breast cancer survivors. 

			Northouse L, Williams AL, Given B, McCorkle R. Psychosocial care for family caregivers of patients with cancer. 

			Craike MJ, Livingston PM, Warne C. Sensitivity and specificity of the Distress Impact Thermometer for the detection of psychological distress among CRC survivors. 

			Zwahlen D, Hagenbuch N, Carley MI, Recklitis CJ, Buchi S. Screening cancer patients’ families with distress thermometer (DT): a validation study. 

			Luckett T, Butow PN, King M, et al. A review and recommendations for optimal outcome measures of anxiety, depression, and general distress in studies evaluating psychosocial interventions for English-speaking adults with heterogeneous cancer diagnoses. 

			Mitchell AJ. Short screening tools for cancer-related distress: a review and diagnostic validity meta-analysis. 

			Dinkel A, Berg P, Pirker C, et al. Routine psychosocial distress screening in radiotherapy: implementation and evaluation of a computerized procedure. 

			Mitchell AJ, Meader N, Symonds P. Diagnostic validity of the Hospital Anxiety and Depression Scale (HADS) in cancer and palliative settings: a meta-analysis. 

			Carlson LE, Waller A., Mitchell AJ. Screening for distress and unmet needs in patients with cancer: review and recommendations. 

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Articles

Cancer and its treatment creates or aggravates psychosocial distress, while unresolved physical and practical problems can also add to the distress of patients attempting to complete their treatment and recovery.

Screening and Management: Distress and the Nurse Navigator, Part II

	Imagine for a moment that you are a young, healthy, vibrant wife and mother who goes to the emergency room for abdominal pain and bloating. You are expecting to have a GI workup and to be sent home with a medication for gastric reflux. Several tests are done: labs; a CT scan of the chest, abdomen, and pelvis; and a paracentesis to remove the extra fluid that is causing the bloating. The simple ER visit turns into an admission to the hospital for further workup, and the outcome is a diagnosis of ovarian cancer with metastasis to the liver. You suddenly change from a woman in control of her health and well-being to a shocked, frightened, overwhelmed patient who hears the word “cancer” but does not fully understand what it means. Oncology, surgery, chemotherapy, and radiation are words you never imagined in your personal health vocabulary. Your focus shifts from the diagnosis to the prognosis, and from thoughts of your own well-being to thoughts of your husband, your children, and your career. How stressful would this be?

	Think now about being a middle-aged man who has just returned from running a marathon. You and your coworkers at the fitness center that you own and operate are training for a triathlon in 6 months. You go for your yearly checkup with your primary-care physician and have blood work, a cardiac stress test, a digital prostate exam, and a routine physical. Your doctor notices an enlarged prostate gland on exam and adds a prostate-specific antigen (PSA) level to the blood work. You leave the office and don’t think much about it until you get a call a week later from the medical assistant, who tells you that you will need to consult an oncologist for your prostate cancer. You have no family history of cancer, you don’t understand what an elevated PSA means, and, frankly, you don’t have time to be sick. All you can think about is how this diagnosis will impact your running and how reasonable it would be to put off treatment until the triathlon is over. How stressful would this be?

	Now picture yourself as a new grandmother, recently retired after a 40-year career as a business professional. You are enjoying spending time with the new baby but seem to feel a bit more fatigued than you are used to. You develop a cold that just seems to linger on. The cold turns into an upper respiratory infection with an annoying cough. You see your family doctor, who prescribes an antibiotic. Two weeks after completing the medicine, the cough is not going away. Suspecting pneumonia, your doctor orders a chest x-ray. When you are called in to discuss the results, a bombshell is dropped: You have suspicious lesions in your lungs. You are referred to an oncologist, who orders subsequent tests including biopsies; a PET scan of the chest, abdomen and pelvis; and blood work. In the process of going through the tests, you develop significant pain in several areas on your spine. When you meet with the oncologist to discuss the results of the tests, you are told that you have non-small cell lung cancer with lymph node involvement and metastasis to the bone. If this wasn’t devastating enough, this is the same diagnosis that your husband received less than 2 years ago. You saw him suffer and change from a strong man into a weak, frail individual who left this world much too soon. How stressful would this be?

	How stressful any of these situations would be depends largely on the individual faced with the situation. Distress is an underestimated, difficult-to-define, and unique response; how stressful something is for one person does not predict how stressful the same situation will be for another. Distress is, however, something that every cancer patient deals with. One goal for a successful nurse navigator program is to be able to recognize distress as a condition that plays a large part in the patient’s cancer journey. With that insight, a navigator can help the patient alleviate the distress, navigate through the rough patches, and focus on his or her health and well-being. To be most helpful, the nurse navigator needs to quickly recognize the patient’s health and financial concerns, psychosocial needs, coping mechanisms, and support system, as well as any cultural influences or religious beliefs that may impact care. The nurse navigator has to identify barriers to treatment so that the patient can get the most appropriate care as quickly as possible.

	At Banner MD Anderson Cancer Center (BMDACC) in Gilbert, Arizona, the nurse navigator program is just getting under way. Since its debut in September 2011, the program has changed multiple times, and the process by which patients navigate through the system has been a moving target. Initially, the nurse navigator, who is an oncology nurse in a case manager’s role, would meet the patients after they had consulted with financial services. This allowed the navigator to assist right up front if high copays or insurance concerns (such as the requirement for prior authorization) were identified.

	Meeting early on also gave the nurse and patient time to form a relationship and to build trust in one another. The navigator could assess the support system, the family dynamics, and the patient’s coping mechanisms. Ideally, the nurse navigator would obtain important information on the initial visit that could be relayed to the appropriate staff, such as social worker, dietitian, physical therapist, or physician. The nurse would gather treatment information, including the patient’s understanding of his or her diagnosis and prognosis; family history of cancer; past surgery, chemotherapy, or radiation treatment; and any medical records or scans the patient had on hand.

	In theory, this meeting prior to the patient seeing the physician was a good idea, but every good idea has its drawbacks. BMDACC nurse navigators recognized that too much time was being spent with patients who were only getting a second opinion; patients who were not returning for treatment were not going to need the nurse navigator, and the time spent on those patients was time taken away from the patients who really needed assistance.

	Meeting the patients ahead of time occasionally made the patients late for the physician visit, causing both the patient and the physician to feel rushed. The anxiety level of patients facing a cancer diagnosis was so high that a large portion of what the navigators were saying so early in the process was not being heard. We recognized that a different approach was indicated to better provide for the needs of our patients.

	Therefore, the nurse navigators switched gears and began seeing the patients after they met with the physician. This allowed the nurse navigator and physician to better communicate regarding the patient’s treatment plan and address distress concerns.

	Regardless of when patients are seen by nurse navigators, at BMDACC, the distress level of the patient and his or her loved ones is considered very relevant to the treatment plan and to the care received. Any navigator program should address distress as one of its key components in order to be effective. The caring, nurturing, and compassionate traits that go along with nursing also need to be incorporated into navigation programs. Cancer patients deserve medical treatment for their cancer and distress relief from their nurse navigator.

One goal for a successful nurse navigator program is to be able to recognize distress as a condition that plays a large part in the patient's cancer journey.

Kerrie L. Girard, RN, BSN

Articles

Screening and Management: Distress and the Nurse Navigator, Part II

Distress and the Nurse Navigator, Part I