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Treating the Whole Patient: Focus on Cancer-Related Fatigue and Pain


Matthew Loscalzo, MSW
Program Co-chair
Director, Patient and Family Services
Co-director, Center for Cancer Pain Research
The Sidney Kimmel Cancer Center
The Johns Hopkins University
Baltimore, Maryland
  Suzanne A. Nesbit, PharmD, BCPS
Clinical Specialist, Pain Management
Department of Pharmacy
The Sidney Kimmel Cancer Center
The Johns Hopkins University
Baltimore, Maryland
Victoria Mock, DNSc, RN, AOCN®
Program Co-chair
Director, Nursing Research
The Sidney Kimmel Cancer Center
The Johns Hopkins University
Baltimore, Maryland
Kathryn Smolinski, MSW, LCSW-C
Senior Clinical Social Worker
The Sidney Kimmel Cancer Center
The Johns Hopkins University
Baltimore, Maryland
MiKaela Olsen, RN, MS, OCN®
Clinical Nurse Specialist, Oncology
The Sidney Kimmel Cancer Center
The Johns Hopkins University
Baltimore, Maryland


Use of Screening Tools in Cancer Patients  

Pain, fatigue, and psychosocial issues are major challenges for patients with cancer, throughout the disease continuum. For this reason, screening and assessment are important in identifying and treating patients who have these or other symptoms. “At the Johns Hopkins Sidney Kimmel Cancer Center, we routinely screen each adult outpatient with cancer, and refer those in need of further attention for a thorough assessment,” said Matthew Loscalzo, MSW, Program Co-chair, Director, Patient and Family Services, Co-director, Center for Cancer Pain Research, the Sidney Kimmel Cancer Center, the Johns Hopkins University, Baltimore, Maryland. Mr. Loscalzo provided an overview of the Psychosocial Screening Program and its implications for addressing fatigue and pain in patients with cancer.

The Psychosocial Screening Program
In screening for cancer-related fatigue and pain, it can be difficult to distinguish between symptoms of fatigue and pain and depression. Indeed, fatigue and depression are both associated with low energy, anhedonia, and low motivation. While 40% to 80% of patients with cancer may experience fatigue, 25% may also have depression (Deragatis et al 1983). At the Johns Hopkins University, the Psychosocial Screening Program helps to address these issues. All outpatients receiving treatment at the cancer center undergo psychosocial screening, which includes a Brief Symptom Inventory-18 (BSI-18), a common problem checklist, and a resource packet. The BSI-18 is a standardized instrument, which addresses a person’s level of psychological distress. The common problem checklist addresses 20 areas, categorized by emotional, social, physical, communication, and economic domains. “The most important question on the checklist is, ‘What problem would you like us to help you with?’,” Mr. Loscalzo noted. Patients who need further attention are then referred to appropriate assessment and treatment. According to Mr. Loscalzo, analysis of the psychosocial screening data have consistently revealed the same top three patient-reported problems: fatigue, pain, and transportation.

Fatigue and Pain
“Fatigue and pain are common bedfellows,” said Mr. Loscalzo. Both syndromes are prevalent and are treatable, and yet they too often go unrecognized. In one study, Vogelzang and associates (1997) conducted a national survey of fatigue, and found that 78% of persons with cancer complain of fatigue, while 80% of oncologists believe that fatigue is undertreated. In 1994, Portenoy and colleagues showed a negative synergy between pain and fatigue, reporting fatigue in up to 80% and pain inup to 90% of patients with advancedcancer.

One of the barriers to adequate treatment of fatigue and pain is the patients’ perspectives. Often, their expectations for fatigue and pain management are low. In addition, fatigue, pain, and psychosocial issues may result in an energy level so low that patients are unable to take the initiative to seek treatment (Table 1). They are simply too weak and tired.

Because fatigue and pain are prevalent but underreported in persons with cancer, oncology professionals need to take the initiative in providing reassurance and asking the right questions. “Accurate screening and assessment are key to ruling out depression, identifying underlying causes, and managing cancer-related fatigue and pain syndromes,” Mr. Loscalzo concluded.

Table 1. Patient Barriers to Reporting Fatigue and Pain

- Wishes to be a good patient
- Has no expectations for effective treatment of fatigue or pain
- Does not wish to bother the doctor or nurse
- Does not consider fatigue or pain life-threatening
- Considers fatigue and pain relatively trivial compared with cancer
- Fears distraction from survival efforts
- May feel depressed or demoralized
- May have cognitive impairment

Fatigue and Anemia: What Is the Link?

Cancer-related fatigue may occur as the result of a number of underlying causes related to the disease and its treatment. “One of the major causes of fatigue is anemia, a condition that threatens both impairment of quality of life and, at its extreme, severe consequences such as myocardial infarction and death,” said MiKaela Olsen, RN, MS, OCN®, Clinical Nurse Specialist, Oncology, the Sidney Kimmel Cancer Center, the Johns Hopkins University, Baltimore, Maryland. According to Ms. Olsen, identification of the underlying cause of fatigue is essential in providing the treatment needed to manage this syndrome and to ensure optimal quality of life for patients with cancer.

Pathophysiology of Anemia
Anemia, although it is a major cause of fatigue in persons with cancer, is often overlooked and undertreated. As a delayed side effect of cancer treatment, anemia is seldom a dose-limiting toxicity, but is associated with decreased quality of life scores, decreased functional capacity, and possible effect on cancer treatment outcomes (Cella et al 2002, Grogan 1999, Dubray 1996, Kumar 1997). “Indeed, retrospective cancer treatment data revealed improved outcomes in patients with relatively normal hemoglobin levels. This may be due to the affinity of radiation and chemotherapy for well oxygenated cells,” Ms. Olsen explained (Hellman 1997, Glaspy et al 1999, Demetri 2001, Littlewood et al 2001). In addition, Cleeland and colleagues (1999) found that increased hemoglobin levels corresponded with increased quality of life scores, with the greatest improvements occurring with an increase from 11 to 12 g/dL (range 11 to 13 g/dL).

According to Ms. Olsen, an understanding of the physiology of red blood cell development in anemia is important. First, tissue hypoxia is the single most potent factor or stimulus in erythropoietin production. In the presence of hypoxia, the kidneys increase production and secretion of endogenous erythropoietin. This in turn stimulates red blood cell production by the bone marrow, thereby correcting hypoxia. However, in persons with cancer, the erythropoietic response and red blood cell production are decreased. “Whereas the red blood cell development pathway is normally triggered with a hemoglobin level of 12 g/dL or less, a greater degree of tissue hypoxia may be needed in patients with cancer,” Ms. Olsen explained. Also causing impairment of red blood cell development may be bone marrow suppression, cancer of the bone marrow, poor dietary intake, chronic inflammation and infection, hemorrhage and hemolysis, and renal disease.

Symptoms and Treatment of Anemia
In patients undergoing chemotherapy for cancer, 100% experience grade I or II anemia, and 80% experience grade III or IV anemia (Curt et al 2000). “Considering the tumor type, chemotherapy regimen, other treatments received, and patient risk factors allows oncology professionals to identify persons at high risk for anemia, and be proactive in its treatment,” said Ms. Olsen. Anemia may present with a number of signs and symptoms, including mental and physical fatigue (Table 1). Left untreated, severe anemia may potentially result in increased cardiac output and thus heart failure, myocardial infarction, and death.

According to the National Comprehensive Cancer Network (NCCN) 2002 guidelines, Cancer and Treatment-Related Anemia, patients with a hemoglobin level < 11 g/dL require assessment to identify cancer- or treatment-related anemia, its specific cause, patient risk, and appropriate treatment plan. For treatment of cancer- or treatment-related anemia, non-pharmacologic strategies, such as education/counseling, nutritional supplementation, and energy conservation, are often beneficial. In addition, pharmacologic treatment is often needed. The use of epoetin alfa and, in cases of severe anemia, blood transfusion is effective in helping to achieve normal hemoglobinlevels.

In conclusion, Ms. Olsen emphasized that utilizing a proactive approach to the treatment of anemia and introducing specific strategies, such as use of an energy calendar, are essential to enhancing patient quality of life and empowering the patient to participate fully in his or her own care.

Table 1. Signs and Symptoms of Anemia

* Fatigue: mental and physical
* Dyspnea
* Weakness
* Chest pain
* Tachycardia
* Dizziness
* Headache
* Pallor
* Constipation
* Irritability
* Hypothermia and chills

Implications and Consequences of Complications in Cancer Patients

In assessing and treating pain in patients with cancer, a multidisciplinary team dedicated to excellence in the evaluation and management of pain is needed. “At the Center for Cancer Pain Research, we stress a comprehensive approach to pain management, with areas of initiative in clinical care, research, and staff and patient education,” said Suzanne A. Nesbit, PharmD, BCPS, Clinical Specialist, Pain Management, Department of Pharmacy, the Sidney Kimmel Cancer Center, the Johns Hopkins University, Baltimore, Maryland.

The Pain Assessment Process
As part of the clinical care provided at the Johns Hopkins cancer pain service, a multidisciplinary oncology team evaluates patients, to identify the etiology and severity of pain and optimal treatment modalities to manage pain. In addition, the current approach is then assessed to ensure optimal management. “The most important step in this process is returning relentlessly until the pain is managed effectively,” Dr. Nesbit said.

During the pain screening and assessment process, several tools are particularly helpful, said Dr. Nesbit. First, oncology staff nurses ask patients for a 24-hour global pain rating (1-10) each evening. An electronic daily pain report is then generated each morning, and patients with pain scores of 4 or greater are sent for further assessment and treatment by the pain service. Another instrument that may be used to rate pain is the visual analogue scale. This tool may be particularly helpful for patients who have difficulty conceptualizing the numeric scale. With all pain screening, assessment, and treatment efforts, documentation is essential, Dr. Nesbit noted.

As part of pain research and educational efforts, the Johns Hopkins team has instituted an institution-wide Pain Policy and Procedure Manual to instruct staff on the rapid titration of opiates, and has developed a comprehensive body of educational and problem-solving materials for patients and their families.

Patient Education About Pain
In an institutional patient survey, oncology professionals asked patients how they learned about cancer pain. “Overwhelmingly, they responded that they learned about cancer pain when the cancer nurse spoke with them in a one-on-one setting,” said Kathryn Smolinski, MSW, LCSW-C, Senior Clinical Social Worker, the Sidney Kimmel Cancer Center, the Johns Hopkins University, Baltimore, Maryland. “Importantly, patients often do not know what or how to ask about pain, and oncology nurses need to provide them with that information,” she said.

As part of informing patients about cancer pain, Ms. Smolinski and her team at Johns Hopkins provide a number of simple, take-home educational materials. First, all patients receive a two-page handout, Understanding and Treating Your Pain. This handout is written at a fifth-grade reading level, and includes pain and treatment information and pain measurement scales. Patients also receive a one-page Question and Answer Fact Sheet, which serves to address frequently asked questions about pain and its treatment. In addition, patients receive a one-page Pain Assessment Worksheet, with which they can describe and show the location of their pain, and utilize the pain measurement scales. A one-page Pain Control Plan allows patients to rate their pain, and includes a pharmacologic (and nonpharmacologic) plan for the treatment of pain and management of side effects. Finally, in the ambulatory setting, cancer center clinical associates ask patients on every visit to rate their pain (0-10). Patients receive a yellow card when rating their pain as moderate (4-6) and a red card when rating their pain as severe (7-10). The card, which is accompanied by written cancer pain management information, is to be given to the provider to initiate a discussion about pain management.

“Many educational tools allow both screening and education. However, the true key to optimal pain management is communication. Oncology professionals need to continually reassure patients that they care about their pain, that they want to know, and that they can help,” Ms. Smolinski concluded.


Strategies and Benefits to Treating Complications: What You Should Know and When You Should Recommend Treatment

As the use of multimodal treatment for cancer has increased in past years, so too has the incidence of cancer-related fatigue. Indeed, cancer-related fatigue is currently the most prevalent unmanaged symptom of cancer and its treatment. “We have made great strides in managing treatment side effects, such as nausea and vomiting, and now must turn our attention to the management of cancer-related fatigue,” said Victoria Mock, DNSc, RN, AOCN®, Program Co-chair, Director, Nursing Research, the Sidney Kimmel Cancer Center, the Johns Hopkins University, Baltimore, Maryland. According to Dr. Mock, cancer-related fatigue is a syndrome that affects patients throughout the disease trajectory, from diagnosis to treatment to survivorship.

Defining Cancer-Related Fatigue
Cancer-related fatigue is defined as an unusual, persistent, subjective sense of tiredness related to cancer or cancer treatment that interferes with usual functioning. This symptom has been reported by up to 90% of patients undergoing cancer treatment, and identified as the most distressing symptom of cancer and its treatment (Mock et al 2000). “Not only does fatigue diminish a patient’s quality of life and ability to function, but also may potentially cause delay in cancer treatment,” Dr. Mock said. According to the National Comprehensive Cancer Network (NCCN) 2000 fatigue guidelines, the first step in the management of cancer-related fatigue is initial and periodic screening for fatigue. Patient self-assessment tools should evaluate not only the presence of fatigue, but also its severity (1-3 = mild, 4-6 = moderate, 7-10 = severe). In addition, patients should be encouraged to keep a daily symptom diary, including documentation of fatigue.

Managing Cancer-Related Fatigue
Once the severity of cancer-related fatigue is rated, an aggressive and proactive approach to treatment is critical (Figure 1). For patients who report mild fatigue, education should be provided, along with ongoing re-evaluation. “Patients need to understand that the fatigue is an expected symptom, that it is not a reflection of worsening disease, and that it is treatable,” Dr. Mock explained.

For patients who rate their fatigue as moderate or severe, a comprehensive fatigue assessment is needed. First, a focused history and physical examination should result in determination of the onset, pattern, and duration of fatigue; any associated or alleviating factors; physical, mental, or emotional symptomatology; interference with functioning; and changes over time. “In addition, one of the most important concepts from the NCCN fatigue guidelines is the correlation of fatigue with five main underlying factors: pain, emotional distress, sleep disturbance, anemia, and hypothyroidism,” Dr. Mock noted. For cancer-related fatigue that is not found to be due to one of these five factors, further evaluation is needed, with attention to other physiologic systems, medications, comorbidities, nutrition/fluid/electrolyte status, and daily activity.

The treatment of cancer-related fatigue is based upon the underlying cause, and may include both nonpharmacologic and pharmacologic approaches. Nonpharmacologic strategies might include general education/counseling on fatigue and coping strategies, exercise, nutrition/fluid/electrolyte balance, sleep hygiene, and restorative therapy. “Exercise, for example, has been shown to lower the resting heart rate and blood pressure, promote efficient use of energy, strengthen muscles, and promote restful sleep,” said Dr. Mock. In addition, exercise has shown psychosocial benefits such as decreased stress hormone levels, increased sense of well-being, and an increased sense of control. A recent study by Mock and colleagues showed that patients with cancer who participated in moderate-intensity brisk walking five to six times/week had lower levels of fatigue, increased physical performance, less psychologic distress, and higher quality of life. Further studies on the effect of exercise on cancer-related fatigue are ongoing.

Finally, the pharmacologic treatment of fatigue is also based on its underlying cause. Hypothyroidism, for example, may require appropriate thyroid replacement therapy, while sleep disturbance warrants a thorough sleep evaluation. Pain, emotional distress, and anemia can be treated in accordance with recently released NCCN guidelines on these topics. For anemia, treatment may include iron, folic acid, or B12 supplementation; epoetin alfa; or (in cases of severe anemia) blood transfusion.

In conclusion, Dr. Mock noted that periodic re-evaluation for fatigue is essential, and that the successful management of cancer-related fatigue will improve the ability to function, enhance quality of life, and potentially allow better adherence to the cancer treatment plan.


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