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Patients with hematologic malignancies often require urgent, aggressive, and lengthy chemotherapy treatment. These treatment regimens, divided into cycles, result in extended, often isolating periods of hospitalization where any direct clinical benefit for the patient, such as remission or "no evidence of disease," is not immediately declared. Consequently, this population is at a high risk of experiencing severe levels of cancer-related distress. Cancer-related distress is a complex psychosocial phenomenon that has consequences for patients, their families, and the healthcare staff. Thus, the importance of prevention, early recognition, treatment, and management is unquestionable. Nurses have an important role to help identify and manage the presence of cancer-related distress in these patients, as well as their family's. Nurses should work proactively in close partnership with an interdisciplinary team to effectively provide the necessary support for patients experiencing or who are at risk for high levels of cancer-related distress. This case study and subsequent discussion illustrate the symptom management needs and challenges related to cancer-related distress in the patient with a hematologic malignancy. Current evidence-based practice guidelines for the assessment and management of cancer-related distress will be presented.
Approximately 140 310 people were diagnosed with a hematologic malignancy (HM) (leukemia, lymphoma, and myeloma) in 2011.1 The treatment for this group of diseases is unique and often includes regimens that are long and aggressive, require extended periods of hospitalization, and may include high-dose chemotherapy and possibly hematopoietic stem cell transplantation.2 Improvements in chemotherapy treatment have resulted in prolonged survival. However, depending on a patient's diagnosis and chromosomal abnormalities, the 5-year survival rate may be as low as 21%3 and include numerous associated physical and/or psychological symptoms that are a result of the treatment and/or the disease process. Given the intense treatments and symptoms found in this population, it is not surprising that they also experience high levels of cancer-related distress.4 Specifically, cancer-related distress has been found to occur in as many as 48.7% of patients with an HM.5
Cancer-related 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[horizontal ellipsis]."6 While cancer-related distress is often amenable to treatment, it is frequently underdiagnosed and thus undertreated in patients receiving care for cancer.7,8 However, when cancer-related distress remains unrecognized and/or undertreated by healthcare professionals, it may lead to such negative consequences as impaired decision making, decreased satisfaction with healthcare received,9 impact treatment and patient recovery.10 Patients with high levels of cancer-related distress may become disabled with depression, anxiety, isolation, panic, and existential and spiritual crisis.6 Prompt diagnosis and management of cancer-related distress can result in improved communication and decreased healthcare utilization.6 Thus, the identification and management of cancer-related distress are pertinent for nurses practicing in oncology, palliative care, and hospice settings and particularly true for patients with an HM.
Martin is a 54-year-old husband and father of 3, who lives in a rural area and has worked at the same factory since graduating from high school. He has one child in college, and the youngest child is a junior in high school. His wife works as an administrative assistant at the local school. Martin presented to a community hospital with uncontrolled epistaxis. After initial medical workup, he was told that he likely had acute myeloid leukemia and was transferred to an academic medical center several hours away. The diagnosis of acute myeloid leukemia was confirmed, and he promptly started induction chemotherapy.
The healthcare team, including the doctors, nurses, and social work have all spoken to Martin regarding the acuity of the disease process as well as the course of treatment. Martin understands that he will likely spend at least the next 4 weeks in the hospital for chemotherapy and subsequent recovery from the treatment. He will then need to come into the hospital for additional consolidation treatment to ensure that the leukemia will not relapse. Martin's wife, who has now been at home alone for several weeks, is concerned about financial stability. She has suggested that he start to consider the possibility of long-term work disability. Martin refuses to discuss this option and continues to insist he just wants to get through this treatment and resume his life. He feels tremendous financial and personal pressure to provide for his family, including college tuition and maintaining their home. He believes he is going to die and is worried that he will leave his family without adequate support. He does not want to trouble his wife or children and has no outlet for his concerns.
Martin's family tries to come regularly to see him, but these visits are limited to the weekends because of distance. He appears to distance himself from his family, expressing little emotion. Martin spends the majority of his time in his room with the blinds drawn. He is reluctant to get out of bed because of fatigue, pain from mucositis, and intermittent diarrhea. He is polite but quiet with the nursing staff and asks no questions of the medical team on daily rounds. He is considered to be an "easy" patient, and while medications are prescribed for diarrhea and mucositis pain, the assessment of psychosocial needs is never considered.
In 1998, the NCCN, through an interdisciplinary panel, initiated the development of clinical practice guidelines focused on the psychosocial care of patients with cancer.6,10,11 Since then, recommendations regarding the detection and management of cancer-related distress have been recognized as an important aspect of clinical cancer care.10 While the NCCN guidelines were designed for the assessment and management of cancer-related distress in community oncology practice,6 the basic principles are also appropriate and applicable to inpatient hematology/oncology care.
Specifically, the NCCN recommends assessing the patient's level of cancer-related distress during the clinic visit prior to his/her appointment.6 However, for patients with an HM who are often immediately hospitalized for supportive management while confirmatory diagnosis is made and subsequent treatment is initiated, modifications in screening are necessary. Thus, screening for cancer-related distress in this unique population should be initiated at time of hospital admission, at patient-directed time intervals and during transitions in the treatment process, or when a patient experiences adverse events, such as infection. The optimal timing of screening after the initial hospitalized assessment is still under investigation.7 A reasonable starting point for clinical practice could be once a week for those patients found to have high levels of distress at their initial admission screening. Important to note is the fact that patients with an HM where cure is the focus receive far less palliative care referrals when compared with patients receiving medical oncology/solid tumor care.4,12
The NCCN Distress Thermometer (DT) (Figure) is the recommended instrument for the assessment of cancer-related distress, as it has been found to be both rapid and effective for the measurement of cancer-related distress.13 The DT has been validated with the Hospital Anxiety and Depressive Scale14 and the Center for Epidemiological Studies-Depression Scale.15 Additionally, the DT has been found to more accurately identify the presence of cancer-related distress, when compared with such instruments as the Hospital Anxiety and Depressive Scale.14 The DT includes both a single-item Likert scale of cancer-related distress on a 0- to 10-point scale and the assessment of five unique causal domains of cancer-related distress for patients. These five domains include practical problems (housing, insurance, transportation), family problems, emotional problems, spiritual/religious concerns, and/or physical problems. Patients are asked to indicate with yes/no if specific issues from each of the five domains have been a problem in the past week. The DT has also been validated as a useful measure in the screening for cancer-related distress in patients hospitalized for bone marrow stem cell transplantation.15
The inherent nature of cancer-related distress may affect any domain of a patient's life, including physical, psychological, social, and/or spiritual. Table 1 details the four domains of distress across the disease trajectory for patients with an HM. These patients may experience physical and/or psychological symptoms at any point in the disease process. Important to note is that patients who report physical symptoms are less likely to have their psychological symptoms, including cancer-related distress, diagnosed and subsequently managed.10 The presentation of physical symptoms that are actually the result of psychological symptoms is the somatization of symptoms, where physical symptoms present as a result of psychological cancer-related distress.10 The recognition and treatment of somatic symptoms are complex and have been found to increase the need for healthcare utilization.16
Commonly reported symptoms of cancer-related distress include anger, sadness, insomnia, anorexia, and social isolation.6 Somatic symptoms commonly found in distressed patients include gastrointestinal upset (nausea, vomiting, diarrhea), pain (headaches, neck/shoulder pain, paresthesia), fatigue, weakness, dyspnea, and/or palpitations.16 A detailed list of physical symptoms commonly found to be present in patients reporting cancer-related distress is presented in Table 2.
Patients with an HM may also experience social distress as a result of their diagnosis and treatment. Social distress may be provoked by a sense of social isolation as well as financial strains that may develop as a result of long hospitalizations, given that these patients may spend weeks to months hospitalized, often in a medical center hours from their home and main support system. After discharge, these patients are typically neutropenic and thus at high risk for infection-related complications. Thus, the social distress may extend to times when while they are home they may still need to limit contact with family and friends, especially young children or grandchildren.
Spiritual distress may develop at any time point in the disease trajectory for these patients. Distress in this domain may be generated by feelings of guilt, burden, loss, to place meaning on their illness, as well as their relationships and/or beliefs in a higher power. The NCCN Distress Guidelines provide extensive suggestions for the assessment and care of patients experiencing spiritual distress.
Mild cancer-related distress (a score of <=4 on the DT) is considered an expected and acceptable level of cancer-related distress for patients, given their current situation. Typical symptoms associated with this level of cancer-related distress may be such feelings as fear, worry, and uncertainty regarding the future. The symptoms associated with cancer-related distress may be present at any point in the disease trajectory.6
Moderate to severe cancer-related distress is considered for any whose score is greater than 4 on the DT. Common symptoms associated with this level of cancer-related distress include excessive worries, fears, sadness, unclear thinking, despair, and hopelessness.6 Understanding and recognizing individuals who are at increased risk for developing high levels of cancer-related distress are an important aspect in the screening and assessment of patients. There are several risk factors that place an individual at increased risk for developing high levels of cancer-related distress. Table 3 provides specific examples of these risk factors, including cognitive impairment, communication barriers, presence of significant comorbid conditions, history of psychiatric illnesses, and social stressors.6Table 4 presents unique factors found to increase an individual's susceptibility to cancer-related distress.
While the use of the DT for the assessment of cancer-related distress offers fast and reliable results, clinicians should not rely solely on this instrument alone for screening. Imperative to appropriate assessment is the use of active listening through both verbal and nonverbal behaviors.10 During active listening, not only is the clinician reinforcing empathy for the patient by creating an empathetic environment, but they are also making it possible to better assess the current state of the patient.10 Additionally, Ryan and colleagues10 report that when clinicians acknowledge the presence of cancer-related distress of a patient, the patient is then more likely to provide further information related to the etiology of his/her distress. This empathic exchange further enhances the clinician's understanding of the origin of cancer-related distress for the patient.
Recommendations on the management of patients with cancer-related distress vary depending on the level of distress that the patient reports, as well as the symptoms that they are experiencing. Patients who report mild cancer-related distress are typically managed by the primary healthcare team, which includes the nurses and oncologists. In caring for patients with mild cancer-related distress, it is crucial for the healthcare providers to develop a strong communication style that facilitates a trusting relationship.6 This communication should include ample time for patients to ask questions.10 Teaching relaxation techniques to manage associated symptoms is another supportive care measure that nurses can facilitate for the management of mild cancer-related distress for patients. Providing patients with a list of community resources, support groups, and online resources, as well as reinforcing to the patient that their feelings are quite normal, may help manage the levels of cancer-related distress. The regular reevaluation of distressing symptoms should be routine across the disease treatment trajectory.
The NCCN recommends that any patient with moderate to severe distress should receive a referral for further evaluation by mental health professional, social worker, or spiritual counselor, as appropriate. In order to be truly proactive for patients with HM, those identified as at high risk for cancer-related distress at diagnosis and admission to the hospital should have immediate and consistent palliative care, social work, and/or clinical psychology consulted on a proactive basis.
The patient-reported domain found to be causing the cancer-related distress from the DT should guide the specific referral. Mental health services are completed by either a psychologist or a psychiatrist and include further diagnostic assessment of the cancer-related distress as well as further exploring areas such as symptoms and past psychiatric history. The NCCN panel has developed specific cancer-related distress guidelines for the management of the seven most common psychiatric disorders, which include dementia, delirium, mood disorder, adjustment disorder, anxiety disorder, substance abuse, and personality disorders.6
For patients whose cancer-related distress is a result of psychosocial problems such as adjustment to illness, social isolation, quality-of-life issues, and/or decision making, counseling and psychotherapy are recommended.6 For these patients, the nurse can be instrumental in providing supportive care during the counseling process, as well as assisting the patient to identify community resources. Providing the patient with information on national resources such as the American Cancer Society, American Psychosocial Oncology Society, and the Leukemia and Lymphoma Society may also be beneficial for patients. The nurse of course will continue to provide education to the patient and family and advocate for optimal symptom and pain reeducation interventions.
Religion and spirituality are important aspects of many people's lives. This is especially true at times of illness, where many people report using religion or spiritual resources as a method to cope with their illness.6 Therefore, when religious or spiritual distress arises, such as loss of faith, relating to God or a higher power, a high level of distress may also develop. Patients may feel comfortable speaking with the nurse about some of these spiritual concerns; however, when high levels of distress are present, the patient receives a visit from a chaplain. Thus, a chaplain is an indispensable member of the interdisciplinary team.
Martin is at day 18 post-induction chemotherapy treatment, and his mucositis pain continues, whereas his diarrhea has become more frequent. He has also begun to develop a dull headache, which he tells his nurse during his morning assessment. Given that Martin's platelet count is 25 000 per microliter, a stat computed tomography is ordered. When Martin learns from his nurse that he will need to have to leave the unit for a computed tomography, he confides in the nurse "I just don't think I can take anything else." In hearing this, the nurse sits down and talks with Martin about how he is feeling. The nurse actively listens as Martin confides how scared he is about his future. The nurse recognizes that Martin appears to be distressed. The nurse discusses this assessment with the healthcare team, and a palliative care consultation is made.
The palliative care team visits Martin the next day and finds that he is very worried and nervous about his future as well as that of his family. He confides that he is having a hard time being away from home, not being able to work, and constantly worrying about what his laboratory counts are. The team determines that Martin is suffering from severe emotional cancer-related distress. The palliative care team teaches Martin relaxation techniques and initiates a counseling referral. Now that the emotion of distress has been identified, the healthcare team is more directly asking Martin how he is doing and providing more time for questions. By the end of the week, Martin's headache has subsided, and his diarrhea is minimal.
Martin's future is uncertain at this point. Once he is well enough to go home, Martin will be closely monitored. Future bone marrow biopsies will determine whether Martin's cancer responded to the initial therapies. If the biopsy findings show he did respond, then Martin will begin consolidation chemotherapy treatment, which requires another 5 days of hospitalized treatment. However, if Martin's cancer did not respond to the treatment, he will need to be hospitalized for reinduction chemotherapy treatment. Additionally, depending on Martin's response, he may be a candidate for hematopoietic stem cell transplantation. Regardless of the treatment course, many of these patients often can benefit from the support of palliative care service.4,12
Cancer-related distress is a common symptom experienced by patients to varying degrees across the cancer disease trajectory. Unfortunately, cancer-related distress is commonly underrecognized and subsequently undertreated.7,8,17 This is especially true for patients with an HM who are highly susceptible to moderate to severe levels of cancer-related distress, given the typical disease course (extended periods of hospitalization, high risk of treatment failure, and/or disease recurrence), all of which may strain social issues for patients and their families. Thus, oncology, palliative care, and hospice nurses all play a vital role in the assessment and management of cancer-related distress for this unique patient population. Nurse practitioners can identify and initiate appropriate referrals for consultations per the cancer-related distress management algorithm developed by the NCCN. Nurses who care for patients on a day-to-day basis establish relationships and thus have the advantage of being able to assess changes in levels of patient distress as well as the ability to facilitate important communication necessary for the best distress management over the course of treatment.18 In order to most appropriately manage cancer-related distress, there need to be standards of assessment universally incorporated into clinical practice; staff need to be aware of the symptoms, how to empathetically communicate with patients, and how to identify what interventions are best suited for patients, given their identified source(s) of cancer-related distress.18 Further research is needed in distress and the psychosocial support needs of patients with an HM.19
Cancer-related distress is highly prevalent and often unrecognized in patients. Yet, the presence of distress may have many etiologies and manifest as additional physical symptoms, which only further exacerbates the discomfort and suffering these patients experience.10,16 Thus, the assessment and early diagnosis of distress are imperative to the appropriate management. Oncology, palliative care, and hospice nurses should work proactively in close partnership with an interdisciplinary team to effectively screen and support patients at high risk for cancer-related distress such those receiving treatment for an HM.
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