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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.
Kerrie L. Girard, RN, BSN
Clinical Navigator, Banner MD Anderson Cancer Center, Gilbert, AZ
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 therapy1,2 and increased medical costs3 and have a negative impact on survival.4 Addressing distress concerns in patients with cancer can have a positive impact in reducing distress and improving quality of life.5-7
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.8
The NCCN has defined 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.”8
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.”9 Most recently, the American College of Surgeons Commission on Cancer incorporated a standard for distress screening into its cancer program accreditation.7
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.10 It has been further noted that the incidence of major depression increases with increasing levels of physical disability, advanced illness, and pain.11 Physical symptoms can also contribute to distress, with fatigue, sleep disturbance, and pain being the most commonly reported physical symptoms.12-16
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.17
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.8 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,
Nurse Navigator, Ingalls Memorial Hospital, Harvey, IL
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.8 This tool has been validated to indicate distress in patients if the score is 5 or higher on the distress thermometer.18,19
Other widely used tools include the Hospital Anxiety and Distress Scale (HADS)20,21 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.22,23 It is beyond the scope of this article to discuss these tools in depth. The reader is referred to Carlson et al24 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.
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—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 al24 outline key points for successful implementation of a distress screening program:
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.25 Since unresolved distress has been implicated in increased medical costs and, possibly, shortened survival,1,2 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.