Patient Communication and Strategies for Managing Fatigue

September 3, 2002

Fatigue is common in patients with cancer. Fatigue is very distressing to patients, who often view it as an indication that their disease is progressing or that treatment is ineffective.

ABSTRACT: Fatigue is common in patients with cancer. Fatigue is very distressing to patients, who often view it as an indication that their disease is progressing or that treatment is ineffective. Patients with a cancer diagnosis frequently have psychological distress. Communication and information help patients cope with the diagnosis of cancer and with the management of side effects. Presenting clear, concise, and well-timed communication to patients regarding fatigue management is an important role for health care providers. This article gives an overview of cancer-related fatigue, the various attitudes that prevail among cancer patients seeking information, and interventions patients can use to help manage their fatigue. Armed with this knowledge, oncology nurses and physicians can better meet the need to provide appropriate information about fatigue to patients and families, and at most appropriate points in the illness. [ONCOLOGY 16(Suppl 10):141-145, 2002]

Fatigue is a commoncomplaintof patients with cancer. It is estimated to occur in 70% to 90% of cancer patients, and in 80% to 100% of thoseundergoing chemotherapy.[1] For radiation therapy, fatigue has been reported by40% to 93% of patients depending on the mode of treatment and radiation site.[2]Fatigue that occurs with biotherapy is related to dose and schedule and can besevere enough to cause a dose delay.[3]

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 respondto stimuli." Fatigue is so nonspecific that it is difficult to state if itis a separate symptom or a melange of many other symptoms. Fatigue is used inthe medical literature when referring to pathologic fatigue, and this has led tothe general acceptance of this term for diagnostic purposes.[4] Illness-relatedfatigue differs from the fatigue that healthy people experience followingperiods of exertion or insufficient sleep.

Cancer-related fatigue persists despite rest and sleep, andtreatment often compounds it. Prior to the mid-1980s, cancer-related fatiguereceived little attention. In the 1990s, when quality-of-life indicators wereincluded as end points in clinical trials those indicators highlighted thenegative impact of fatigue.

Communication and information help patients and theirfamilies 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 withinformation. The challenge for those who care for patients with cancer isproviding individualized and timely information.[5] We must recognize theoverwhelming impact fatigue has on patients’ functional abilities. Thisarticle will address the profound clinical difficulties associated with fatigue,discuss how and when to best communicate with patients, and present importantinterventions that patients can use to manage their fatigue.

Overview of Fatigue

Fatigue due to cancer and cancer treatment can negativelyimpact patients’ ability to function. Numerous studies have shown that raisinghemoglobin improves functional status and patients’ quality of life. Qualityof life is improved in correlation with increased hemoglobin and independent oftumor response. To draw these conclusions, Glaspy, Demetri, and Gabrilovestudied more than 7,000 patients.[6-8] The three studies all concluded thatpatients receiving erythropoietin (epoetin-alfa [Epogen, Procrit]) experiencedimprovement in their functional status and quality of life. These study resultsshould motivate the health care provider to assess and aggressively treat anemiain cancer patients.

Symptom management in cancer care has greatly improved in thelast 15 years. The ability to better control nausea and vomiting has changed theprofile of patients’ symptoms during the course of their treatment. Fatigue isnow one of the most common symptoms of cancer patients.[9] Vogelzang et alreported that fatigue negatively affected many aspects of patients’ lives,such as the ability to work (61%), physical well-being (60%), ability to enjoylife in the moment (57%), intimacy with their partner (44%), ability to takecare of their family (42%), and relationships with friends and family (38%).[10]

Vogelzang studied the different perceptions of the causes offatigue from the patient’s, the oncologist’s, and the home caregiver’sview points. Patients felt the treatment was the major cause of their fatigue(54%) vs illness (13%) and both (13%). Oncologists ranked illness as the majorcause 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 causeof fatigue (64%), as compared with illness (14%), or both (14%). The obviousconclusion from this study is that the patient and the caregiver perceivefatigue differently than the physician.[10]

Vogelzang also asked patients and oncologists which was moreimportant to reduce or relieve: pain or fatigue. The patients chose reduction offatigue (42%) as more important than pain relief (34%). The oncologists rankedpain as the symptom that patients most wanted relieved or reduced (94%) vsfatigue (5%). This study should strengthen the argument for aggressivelyassessing and treating patients with the complaint of fatigue. Since reducingfatigue is extremely important to patients, health care providers need torecognize fatigue and intervene promptly. A baseline assessment is essential fordetermining appropriate treatment and the patient’s response to treatment.

Fatigue can quickly lead patients down the path of decreasedfunction, reduced activity, inability to care for self or others, inability towork (which has socioeconomic impacts), and cognitive deficiencies that causereduced self-esteem and compromised relationships that can quickly lead todepression and further withdrawal.

Communicating WithPatients About Fatigue

When teaching patients about symptom management, caregiversshould remember that adults rapidly forget what they learn—especially in timeof stress (Table 1). Cancer patients are motivated to learn, but may beoverwhelmed by emotions. Patients will likely forget 90% of what they have beentaught by the end of the week. Thus, health care providers should strive to makethe 10% that patients retain a memorable "take home" message.

Adult learners are motivated to learn when learning istask-oriented, according to Malcolm Knowles’ Adult Learning Theory.[11]Knowles emphasizes that adults are self-directed and expect to haveresponsibility for decisions. Adult programs must accommodate this fundamentalaspect of learning. Adults need to be involved in the planning and evaluation oftheir instruction: experience (including mistakes) provides the basis forlearning, and adult learning is problem-centered rather than content-rich. Ineducating adults, their wide variety of backgrounds and cultures must be takeninto account (Table 2).

Amount and Type ofPatient Information

How much information does a cancer patient want or need whileundergoing treatment? Does the amount and type of information change while apatient is undergoing treatment and throughout the disease trajectory?

A small, insightful study was conducted at an outpatientclinic in London. Leydon et al looked at cancer patients’ information needsand behaviors. Three common attitudes of these patients appeared to affect theirdesire for information: faith, hope, and charity. These attitudes affectedinformation needs and information-seeking behaviors differently at various timesin the course of the patient’s illness.[12] This point is important toconsider when informing and educating patients about their disease andtreatment.

Faith—Thefirst common attitude described by Leydon and colleagues was faith, specificallythe patients’ faith in their doctors. Faith reflected the belief that"the doctor knows best" because of the complexity and uncertainty ofcancer treatment. Their faith in the doctors’ ability to prescribe modern andimpressive treatments often kept patients from seeking further information.[12]

At this symposium, M.L., a breast cancer survivor, shared hertreatment experiences with the audience. M.L. is a 44-year-old woman with stageII infiltrating ductal carcinoma. She holds a stressful position and workedduring 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 ofactivity, but her anemia was not severe enough for her to receive erythropoietictherapy under her insurance coverage guidelines. M.L. observed that faith in adoctor could deter a patient from seeking more information. She said, "Ithought too much information was going to cloud my judgment, so I went by faiththat what he (the doctor) was doing was going to make me well."

Hope—Thesecond common attitude described by Leydon and colleagues was hope. The authorsconcluded that all patients in the survey felt that hope was indispensable forsurvival. Some patients were driven by hope to seek alternative therapy. Forother patients, an attitude of hope meant limiting the information search or theavoidance of new information. Patients have a tendency to avoid negativeinformation, especially around family members, because they feel they need toalways have a brave face. Patients felt that additional or contradictoryinformation caused great anxiety and confused treatment decisions; therefore,they often avoid asking questions.[12]

Herth concluded that helping an ill person to maintain hopeand avoid hopelessness is a major task for the professional nurse.[13] Nurses’behaviors can play a major role in inspiring and strengthening hope becausenurses are around the patient at time of diagnosis, during treatment, and at theend of life. Nowotny, from his research, claimed that a hopeful person has plansfor the future, shows confidence about the outcomes of a situation, sees thelight at the end of the tunnel, and knows that they can accomplish a task.[14]

It is important to maintain hope for patients when discussingtheir disease and their treatment. However, research has shown that whenpatients reach their terminal stage of disease, 95% of the time they want thephysician to be completely honest, even if there is little hope.[15] Expertsrecommend asking patients how much they want to know about their illness beforediscussing it with them. This question gives patients permission to declinestressful information, and it allows full disclosure for those who desire it.

Charity—Thethird common attitude described by Leydon was charity. All of the patients inthe survey felt charity. Patients felt that access to those who provide theinformation was a limited resource and to be shared by all. All patients in thestudy reported having been influenced by thoughts of others whom they perceivedto be worse off than themselves. Patients stated that information obtained byfamily and friends was easier to accept because they were not using a limitedresource. Information was easier to accept when verbally offered by health careproviders rather than when asked for by patients.[12]

Not surprisingly, the Leydon study also noted genderdifferences. Women patients often valued their own and others’ experience andknowledge, especially that of other cancer patients. This personal experiencewas often invaluable for women when making treatment decisions. In contrast, menavoided discussing the experiences of others, and they did not address issues ofdisease recurrence and death. Men on this study preferred "life asnormal" in which state they claimed that cancer could be forgotten.[12]

Leydon’s study is a small sample, but an intriguing study.It gives insights into the reasons, at all stages of their illness, why patientsdo not seek information. What can health care providers conclude? Not allpatients want extensive information about their conditions and treatment. Somepatients fear negative information, while others want to avoid conflictinginformation.

Patient M.L. shared with the audience, "I thought toomuch information was going to cloud my judgment. So I went by the faith thatwhat the doctor was going to do for me was going to make me well. Many times Idid 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 cancersurvivor, who was a nurse at UCLA. It was nice to have support around just incase I couldn’t ask the question that I didn’t want the answer to. I couldoften get the answer through e-mail—it was a lot easier to read then hear—strangelyenough."

Interventions forCancer Fatigue

Presenting clear, concise, and well-timed communication topatients and their support systems regarding fatigue management is an importantrole of the health care provider. Patients often interpret fatigue as anindication that their disease has progressed or that the treatment is notworking. When patients manage fatigue on their own, without advice from nursesor doctors, they tend to use common sense approaches. The interventions that thepatients adopt tend to work for healthy people with fatigue, but not forpatients with cancer-related fatigue.[16]

Education

Educating patients about fatigue, with appropriateinterventions, is therefore of vital importance. Sharing stories from otherpatients can prepare patients for the experience of fatigue. This strategyallows patients to come up with a plan and to reassess short- and long-termgoals. Identifying factors that increase fatigue is of assistance to patients.Using a daily or monthly calendar, such as those located on 4anaemia. com,[17]are excellent assessment tools to track patients’ patterns of fatigue.Tracking fatigue enables patients to see their patterns and balance their energyexpenditure and energy restoration. These calendars also give an excellentoverview of a patient’s fatigue for the health care provider.

Treatment

It is important to treat causes of fatigue such as anemia,hypoxia, electrolyte imbalances, steroids, and medication side effects. Thehealth care provider also needs to manage other symptoms such as pain, nausea,and vomiting, and educating and assisting patients to maintain adequatenutrition, especially hydration, caloric intake, protein diet, and vitamins isvital.

It is important to promote proper sleep/rest patterns forpatients and to address sleep-disturbing problems such as urinary frequency,diarrhea, hot flashes, and pain. Patients should be encouraged to sleep justlong enough, wake at the same time each day, and avoid stimulants. When catnapsare encouraged, patients should understand how naps affect them. It is criticalthat patients understand that sleep and rest alone do not relieve cancer-relatedfatigue.[16]

Exercise

Despite conventional wisdom to rest during cancer treatment,several studies have shown that modest exercise decreases patients’ fatigue byincreasing overall functioning. Winningham et al initially identified thatexercise could decrease fatigue in patients with cancer.[18] They discoveredthat participants in the cycling rehabilitation program had increased exercisetolerance and enhanced functional capacity. Segal et al studied early-stagebreast cancer patients who maintained a regular exercise program of hour-longwalk sessions three to five times per week for 6 months. The exercise group hada significant improvement in cardiac conditioning and overall physicalfunctioning. The control group relied on conventional wisdom, did little or noexercise during treatment, and lost physical functioning.[19]

Mock et al evaluated exercise and fatigue in breast cancerpatients undergoing radiation therapy.[20] Patients who followed the exerciseprogram reported half the fatigue level and additional psychosocial benefits.The patients felt they adapted more quickly to their diagnosis and treatment.These studies confirm that exercise helps patients with cancer. Unfortunately,most of these studies have been limited to patients with breast cancer. Exerciseresearch is needed for other malignancies, especially for those patients treatedwith chemotherapy or radiation. Nevertheless, exercise and rehabilitationprograms appear to have a place in cancer care.

Cognitive Interventions

Attention fatigue has been defined as a decreased capacity toconcentrate or direct attention.[16] A study of breast cancer patients andlymphoma patients concluded that 85% of patients receiving chemotherapy scoredlower on the neuropsychological assessment compared with patients treated withsurgery or radiation alone. All study participants were at least 5 yearspostdiagnosis, not currently being treated, and disease free.[21] Cognitiveimpairment often is under-recognized in cancer patients,[22] who needencouragement to keep their minds busy.

Cimprich devised a cognitive intervention that requiredpatients to perform a favorite activity three times per week.[23] The patientswho performed the activity had improved attention capacity and scored closer tothe control group. Further studies are needed to conclude that restorationactivities can improve attentional fatigue and give a sense of well-being. Somerestoration activities that can be recommended to patients include gardening,walking in nature, listening to music, reading, and writing.[16]

Future research is needed to find the appropriateinterventions to ameliorate the effect cancer and its treatment have oncognitive abilities. Erythropoietic therapy is currently being evaluated as aneuroprotective option with potential in reducing inflammation and treatingglobal and focal cerebral ischemia. Erythropoietic therapy could play a futurerole in the prevention and treatment of "chemo brain."

Patient M.L. states, "Chemo brain was a very realproblem for me. I didn’t realize that it would affect immediate memory. Oneday I accused a cashier of not giving me change after I had placed the change inmy purse several seconds earlier. It was a very embarrassing situation. I didcomputer games to keep my mind active. I don’t think that doctors can stressenough the chemo brain aspect of treatment. It’s hard enough to have theenergy to do everyday things, and not remembering makes you more aware that yourillness is affecting you not just physically, but mentally."

Asking for Help

Cancer patients also need encouragement to ask for and accepthelp from family and friends. This is often very difficult for independentpeople, but is critical for managing their cancer-related fatigue. Patientsshould appoint a family member or friend as the coordinator who assigns peopleto help. The patient then allows that individual to screen calls and visitors.It is important to remember to refer the person in that role to supportiveinformation about caring for the caregiver.

M.L. shared, "I found it difficult to have familymembers and friends help me because I wanted to take control of my disease andcare. Family members and friends should let patients know that it’s okay toask for help."

Psychosocial Aspects of Fatigue

In two studies, 70% of cancer patients reported depression,anxiety, and anger.[24-25] These reactions make it difficult for patients tomanage the side effects of cancer treatment. Cancer patients often experienceboth depression and fatigue. Health care providers thought that treatingdepression might also reduce fatigue, but a recent large randomized study of 738chemotherapy patients reported that fatigue and depression co-exist in cancerand may not have the same causes. This study concluded selective serotoninreuptake inhibitor antidepressants did not affect cancer-related fatigue.[26]More research is needed in this very important area.

Nail et al designed very useful guidelines fordifferentiating between fatigue and depression in patients with cancer.[27] Theguidelines recommend initial assessment of fatigue for treatable causes such asanemia, infection, hypoxia, medication side effects, etc. If the cause istreatable, then the problem should be corrected and the patients reassessed. Ifthere is no treatable cause, then the pattern of fatigue and any cancertreatment should be further assessed. If the pattern of fatigue does not appearto be treatment related, the depression should be evaluated to see if it meetsthe standard definition. If it does meet this definition, a mental healthreferral should be considered. If it does not meet the definition of depression,better management of patients’ symptoms and side effects should be considered.Psychosocial support of patients in a fatigue intervention program is critical.

Conclusions

Fatigue is prevalent and overwhelming for many cancerpatients, and providing patients with the time and opportunity to learn aboutfatigue is very valuable. Patients’ self-esteem, confidence, and overallpsychological well-being can be enhanced when they learn to manage theirfatigue. Johnson et al suggested that functioning and quality of life areimproved when patients are informed, since educational interventions relievestress and reduce negative affects of the unknown.[28]

It is important to remember that when patients are firstdiagnosed, they find themselves thrown into an unfamiliar learning environment,where they have little or no time to adjust before they are asked to retain agreat deal of information and make treatment decisions. They need education andearly intervention to appropriately manage their fatigue.

When educating patients, health care providers shouldremember that many factors influence a cancer patient’s ability to retaininformation. Not all patients want the same amount of information about theirdisease and the treatment. The desire for information will vary throughout thecourse of a patient’s disease process. We should not overburden our patientswith too much information at any given time. Health care providers find itdifficult to refrain from overwhelming patients with information because theywant patients to make informed choices and to understand how to manage theirdisease. But we should try to assess patients and families closely beforeextensive educational sessions. However, because of time and visit constraints,overloading a patient with information is sometimes unavoidable.

Health care providers in clinical practice who care forpatients with cancer-related fatigue need to develop resources and skills toassess and manage that fatigue. Proactive approaches to patients’ fatigue areessential, because maintaining quality of life for cancer patients is asimportant as treatment of their disease.

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