Fatigue is a common complaint of patients with cancer. It is estimated to occur in 70% to 90% of cancer patients, and in 80% to 100% of those undergoing chemotherapy. For radiation therapy, fatigue has been reported by 40% to 93% of patients depending on the mode of treatment and radiation site. Fatigue that occurs with biotherapy is related to dose and schedule and can be severe enough to cause a dose delay.
Fatigue is defined in the Medical Subject Heading Index as "a state of weariness following a period of exertion, mental or physical, characterized by a decreased capacity for work and reduced efficiency to respond to stimuli." Fatigue is so nonspecific that it is difficult to state if it is a separate symptom or a melange of many other symptoms. Fatigue is used in the medical literature when referring to pathologic fatigue, and this has led to the general acceptance of this term for diagnostic purposes. Illness-related fatigue differs from the fatigue that healthy people experience following periods of exertion or insufficient sleep.
Cancer-related fatigue persists despite rest and sleep, and treatment often compounds it. Prior to the mid-1980s, cancer-related fatigue received little attention. In the 1990s, when quality-of-life indicators were included as end points in clinical trials those indicators highlighted the negative impact of fatigue.
Communication and information help patients and their families cope with the diagnosis of cancer and the management of side effects. The fear that is invoked with the diagnosis of cancer can be diminished with information. The challenge for those who care for patients with cancer is providing individualized and timely information. We must recognize the overwhelming impact fatigue has on patients’ functional abilities. This article will address the profound clinical difficulties associated with fatigue, discuss how and when to best communicate with patients, and present important interventions that patients can use to manage their fatigue.
Fatigue due to cancer and cancer treatment can negatively impact patients’ ability to function. Numerous studies have shown that raising hemoglobin improves functional status and patients’ quality of life. Quality of life is improved in correlation with increased hemoglobin and independent of tumor response. To draw these conclusions, Glaspy, Demetri, and Gabrilove studied more than 7,000 patients.[6-8] The three studies all concluded that patients receiving erythropoietin(Drug information on erythropoietin) (epoetin-alfa [Epogen, Procrit]) experienced improvement in their functional status and quality of life. These study results should motivate the health care provider to assess and aggressively treat anemia in cancer patients.
Symptom management in cancer care has greatly improved in the last 15 years. The ability to better control nausea and vomiting has changed the profile of patients’ symptoms during the course of their treatment. Fatigue is now one of the most common symptoms of cancer patients. Vogelzang et al reported that fatigue negatively affected many aspects of patients’ lives, such as the ability to work (61%), physical well-being (60%), ability to enjoy life in the moment (57%), intimacy with their partner (44%), ability to take care of their family (42%), and relationships with friends and family (38%).
Vogelzang studied the different perceptions of the causes of fatigue from the patient’s, the oncologist’s, and the home caregiver’s view points. Patients felt the treatment was the major cause of their fatigue (54%) vs illness (13%) and both (13%). Oncologists ranked illness as the major cause of the patient’s fatigue (54%), treatment as the secondary cause (41%), and both as the last one (13%). Caregivers ranked treatment as the major cause of fatigue (64%), as compared with illness (14%), or both (14%). The obvious conclusion from this study is that the patient and the caregiver perceive fatigue differently than the physician.
Vogelzang also asked patients and oncologists which was more important to reduce or relieve: pain or fatigue. The patients chose reduction of fatigue (42%) as more important than pain relief (34%). The oncologists ranked pain as the symptom that patients most wanted relieved or reduced (94%) vs fatigue (5%). This study should strengthen the argument for aggressively assessing and treating patients with the complaint of fatigue. Since reducing fatigue is extremely important to patients, health care providers need to recognize fatigue and intervene promptly. A baseline assessment is essential for determining appropriate treatment and the patient’s response to treatment.
Fatigue can quickly lead patients down the path of decreased function, reduced activity, inability to care for self or others, inability to work (which has socioeconomic impacts), and cognitive deficiencies that cause reduced self-esteem and compromised relationships that can quickly lead to depression and further withdrawal.
When teaching patients about symptom management, caregivers should remember that adults rapidly forget what they learnespecially in time of stress (Table 1). Cancer patients are motivated to learn, but may be overwhelmed by emotions. Patients will likely forget 90% of what they have been taught by the end of the week. Thus, health care providers should strive to make the 10% that patients retain a memorable "take home" message.
Adult learners are motivated to learn when learning is task-oriented, according to Malcolm Knowles’ Adult Learning Theory. Knowles emphasizes that adults are self-directed and expect to have responsibility for decisions. Adult programs must accommodate this fundamental aspect of learning. Adults need to be involved in the planning and evaluation of their instruction: experience (including mistakes) provides the basis for learning, and adult learning is problem-centered rather than content-rich. In educating adults, their wide variety of backgrounds and cultures must be taken into account (Table 2).
Amount and Type of Patient Information
How much information does a cancer patient want or need while undergoing treatment? Does the amount and type of information change while a patient is undergoing treatment and throughout the disease trajectory?
A small, insightful study was conducted at an outpatient clinic in London. Leydon et al looked at cancer patients’ information needs and behaviors. Three common attitudes of these patients appeared to affect their desire for information: faith, hope, and charity. These attitudes affected information needs and information-seeking behaviors differently at various times in the course of the patient’s illness. This point is important to consider when informing and educating patients about their disease and treatment.
FaithThe first common attitude described by Leydon and colleagues was faith, specifically the patients’ faith in their doctors. Faith reflected the belief that "the doctor knows best" because of the complexity and uncertainty of cancer treatment. Their faith in the doctors’ ability to prescribe modern and impressive treatments often kept patients from seeking further information.
At this symposium, M.L., a breast cancer survivor, shared her treatment experiences with the audience. M.L. is a 44-year-old woman with stage II infiltrating ductal carcinoma. She holds a stressful position and worked during her entire treatment course even though she had mild to moderate anemia. M.L. was extremely fatigued and unable to function at a normal level of activity, but her anemia was not severe enough for her to receive erythropoietic therapy under her insurance coverage guidelines. M.L. observed that faith in a doctor could deter a patient from seeking more information. She said, "I thought too much information was going to cloud my judgment, so I went by faith that what he (the doctor) was doing was going to make me well."
HopeThe second common attitude described by Leydon and colleagues was hope. The authors concluded that all patients in the survey felt that hope was indispensable for survival. Some patients were driven by hope to seek alternative therapy. For other patients, an attitude of hope meant limiting the information search or the avoidance of new information. Patients have a tendency to avoid negative information, especially around family members, because they feel they need to always have a brave face. Patients felt that additional or contradictory information caused great anxiety and confused treatment decisions; therefore, they often avoid asking questions.
Herth concluded that helping an ill person to maintain hope and avoid hopelessness is a major task for the professional nurse. Nurses’ behaviors can play a major role in inspiring and strengthening hope because nurses are around the patient at time of diagnosis, during treatment, and at the end of life. Nowotny, from his research, claimed that a hopeful person has plans for the future, shows confidence about the outcomes of a situation, sees the light at the end of the tunnel, and knows that they can accomplish a task.
It is important to maintain hope for patients when discussing their disease and their treatment. However, research has shown that when patients reach their terminal stage of disease, 95% of the time they want the physician to be completely honest, even if there is little hope. Experts recommend asking patients how much they want to know about their illness before discussing it with them. This question gives patients permission to decline stressful information, and it allows full disclosure for those who desire it.
CharityThe third common attitude described by Leydon was charity. All of the patients in the survey felt charity. Patients felt that access to those who provide the information was a limited resource and to be shared by all. All patients in the study reported having been influenced by thoughts of others whom they perceived to be worse off than themselves. Patients stated that information obtained by family and friends was easier to accept because they were not using a limited resource. Information was easier to accept when verbally offered by health care providers rather than when asked for by patients.
Not surprisingly, the Leydon study also noted gender differences. Women patients often valued their own and others’ experience and knowledge, especially that of other cancer patients. This personal experience was often invaluable for women when making treatment decisions. In contrast, men avoided discussing the experiences of others, and they did not address issues of disease recurrence and death. Men on this study preferred "life as normal" in which state they claimed that cancer could be forgotten.
Leydon’s study is a small sample, but an intriguing study. It gives insights into the reasons, at all stages of their illness, why patients do not seek information. What can health care providers conclude? Not all patients want extensive information about their conditions and treatment. Some patients fear negative information, while others want to avoid conflicting information.
Patient M.L. shared with the audience, "I thought too much information was going to cloud my judgment. So I went by the faith that what the doctor was going to do for me was going to make me well. Many times I did not ask questions because I was afraid of what the answer was going to be. There was a lot of fear in me. I could ask questions of a breast cancer survivor, who was a nurse at UCLA. It was nice to have support around just in case I couldn’t ask the question that I didn’t want the answer to. I could often get the answer through e-mailit was a lot easier to read then hearstrangely enough."