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The Impact of Fatigue on Patients with Cancer: Overview of FATIGUE 1 and 2

National Cancer Institute/National Institutes of Health, Bethesda, Maryland, USA

Correspondence: Gregory A. Curt, M.D., Clinical Director, National Cancer Institute/National Institutes of Health, Oncology Program, Building 10, Room 12N214, 9000 Rockville Pike, Bethesda, Maryland 20892, USA. Telephone: 301-496-4251; Fax: 301-496-9020; e-mail: curtg{at}pbmac.nci.nih.gov

	Abstract

Top Abstract Introduction FATIGUE 1 FATIGUE 2 Conclusions: Fatigue-Related... References

 
Fatigue is a complex, multifactorial disorder with physical, mental, and psychological dimensions that has been associated with diminished quality of life (QOL) in patients with cancer. The prevalence and severity of fatigue, however, has only recently been studied systematically. Two national surveys commissioned by The Fatigue Coalition, a multidisciplinary group of medical practitioners, researchers, and patient advocates, whose mission is to study the importance of fatigue for patients with cancer and their caregivers, have assessed the prevalence, severity, and QOL consequences of fatigue in patients with cancer. The most recent survey, initiated in 1998, sought to confirm and extend observations on the prevalence and impact of fatigue in patients with cancer as part of an initiative to develop guidelines for the differential diagnosis and treatment of fatigue. The FATIGUE 2 study probed the emotional, social, physical, and economic impact of fatigue on patients with cancer and their caregivers. Patient perceptions of the professional response to cancer-related fatigue were also assessed. The key findings of these surveys are reviewed. 2000;5(suppl 2): 9-12

Key Words. Cancer-related fatigue • Incidence • Quality of life • Economics

	Introduction

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Whether caused by the disease process directly or by the treatments used to treat the disease, anemia is a common but under-recognized occurrence in patients with cancer that is often accompanied by fatigue or a lack of energy. A complex, multifactorial disorder with physical, mental, and psychological dimensions, fatigue has been associated with diminished quality of life (QOL) and decreased hemoglobin concentrations in patients with cancer [1]. Anecdotal evidence suggests that fatigue impairs the lives of patients with cancer. Few studies, however, have systematically assessed the impact of fatigue in this population.

To better understand the impact of fatigue, two national surveys have assessed the prevalence, severity, and QOL consequences of fatigue in patients with cancer. This research is sponsored by The Fatigue Coalition, a multidisciplinary group of medical practitioners, researchers, and patient advocates, whose mission is to study the importance of fatigue for patients with cancer and their caregivers and to develop guidelines for the differential diagnosis and treatment of fatigue. Fatigue Coalition members include experts in the fields of cancer, HIV, neurology, psychometrics, and psychiatry, as well as patient advocates.

In 1996, The Fatigue Coalition commissioned FATIGUE 1, a survey designed to assess the incidence, prevalence, and functional consequences of fatigue in patients with cancer and their caregivers [2]. FATIGUE 1 also queried oncologists on their perceptions of the impact of fatigue on their patients. This first survey established that symptomatic fatigue in patients with cancer is both pervasive and profound. A second survey, initiated in 1998, sought to confirm and extend these observations. The FATIGUE 2 study probed the emotional, social, physical, and economic impact of fatigue on patients with cancer and their caregivers, as well as the duration of symptoms [3]. The key findings of these surveys are reviewed here.

	FATIGUE 1

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Initiated in 1996, FATIGUE 1 surveyed patients with cancer who were treated with chemotherapy and/or radiation—along with their caregivers and oncologists—to better understand the incidence, prevalence, and functional consequences of fatigue for patients with cancer [2]. The study also surveyed caregivers' perceptions and attitudes toward fatigue and the emotional impact on patients with cancer and assessed oncologists' attitudes toward and responses to fatigue in their patients. A total of 419 chemotherapy and/or radiation-treated patients with cancer were surveyed by telephone, along with 200 primary caregivers and 197 oncologists.

The results of this survey established that symptomatic fatigue in patients with cancer is both pervasive and profound. Moreover, the survey revealed that fatigue is rarely discussed in a clinical setting and is unlikely to be treated [2]. Physicians and patients concurred on the prevalence and frequency of fatigue, agreeing upon a prevalence rate of 76% to 78%. The groups had divergent perspectives, however, on the experience and severity of fatigue: 61% of patients said fatigue affected their lives more than cancer-related pain, compared with only 37% of oncologists. The results of FATIGUE 1 also demonstrated that fatigue among patients with cancer is undertreated. Half of all surveyed patients did not discuss treatment options for fatigue with physicians, and only 27% of patients received specific recommendations for treatment. In summary, the results of FATIGUE 1 underscored the significance of fatigue for patients with cancer, suggesting that heightened awareness of fatigue, better understanding of its impact, and improved physician–patient communications could substantially enhance QOL.

	FATIGUE 2

Top Abstract Introduction FATIGUE 1 FATIGUE 2 Conclusions: Fatigue-Related... References

 
Building upon the findings of FATIGUE 1, the purpose of FATIGUE 2 was to further investigate the extent to which fatigue is experienced by patients with cancer both during and after their treatment. Specifically, the survey was designed to meet four primary goals: quantify the incidence, prevalence, and relative importance of fatigue as a condition associated with chemotherapy; define what fatigue means to patients with cancer who experience it, and how it is experienced by patients and their caregivers; explore the consequences of living with fatigue and its physical, emotional, economic, and mental effects on patients and their caregivers; and develop insights into how physicians can better communicate, understand, and empathize with their patients [3].

Methodology and Demographics
In contrast with FATIGUE 1, oncologists were not surveyed as part of this study. Instead, emphasis was placed on determining the emotional, social, physical, and economic impact of fatigue on patients with cancer and their caregivers and on quantifying the duration of cancer-related fatigue.

Quantitative telephone interviews were conducted between July and August of 1998 in patients with cancer who have a history of receiving chemotherapy. Participants for the study were recruited from a nationally representative panel of 575,000 households balanced for ethnic, gender, educational, and socioeconomic factors based on the latest United States census data. Of 834 potentially eligible contacts, 406 had been treated with chemotherapy, and 376 interviews were completed within this eligible group.

The survey instrument consisted of approximately 50 questions and gathered information on the physical, emotional, behavioral, and economic affects of fatigue in these patients. After answering several background questions, patients who reported they "hardly ever" experienced fatigue (defined as a general feeling of debilitating tiredness or loss of energy) were asked only a few additional demographic questions for statistical purposes. Patients who experienced fatigue at least a few days each month were asked a series of questions aimed at describing fatigue, its impact compared to other common chemotherapy-induced side effects (i.e., nausea, pain, depression), and the degree of communication about fatigue with clinicians.

Of the 376 eligible respondents, 53% were treated with chemotherapy alone, whereas 47% had received radiation in addition to drug treatment. Forty percent of patients had been treated within the past two years, whereas the remainder had been treated more than two years previously (35% of patients received their last treatment more than five years ago).

Duration and Impact of Cancer-Related Fatigue
When asked how often they felt fatigue during the most recent treatment, 30% of patients reported feelings of fatigue daily and 59% reported feelings of fatigue weekly or more often. Overall, as previously indicated by results of FATIGUE 1 [2], 76% of patients experienced fatigue at least monthly. Chemotherapy-related fatigue was prolonged. When asked how long bouts of fatigue last, roughly one-third of patients responded "more than two weeks," and 45% said it lasted at least a week. Only 6% of these patients indicated that episodes of fatigue lasted less than one day.

Fatigue was also the most prevalent symptom reported by patients receiving chemotherapy with or without radiation, with 76% of patients experiencing fatigue at least monthly. Among these patients, fatigue was more prevalent than other common side effects of chemotherapy (nausea, depression, and pain). Fatigue was also judged to be the longest lasting and most intrusive side effect of chemotherapy, persisting longer than pain, nausea, and depression and having a greater effect on everyday life. Examined either as the percentage of patients identifying fatigue as the first-ranked side effect or as the mean rank score, patients consistently noted fatigue as the longest lasting and most impairing treatment side effect.

When asked how fatigue affected their everyday life, 49% of patients thought that the impact was significant, and only 10% believed that fatigue was a symptom irrelevant to their activities of daily living. Among patients experiencing fatigue (n = 301), physical, emotional, mental, and social limitations were evident. Walking, exercising, house cleaning, climbing stairs, and lifting were perceived as more difficult in most patients. Indeed, many common activities of daily life were described as being somewhat or a lot more difficult, even such simple activities as preparing food and eating. Cancer-related fatigue also had a significant emotional component, with 90% of patients agreeing that fatigue contributes to a feeling of loss of control and an inability to lead a normal life. Hopelessness, isolation, and loneliness were also common symptoms each reported in approximately three-quarters of patients. Other important emotional and mental consequences of fatigue were also manifest in these patients: a need to push one's self, a lack of motivation, sadness, frustration, and mental exhaustion were all common feelings. Indeed, fatigue can be so debilitating in these patients that 19% reported an urge to die. A surprising number of patients also reported fatigue-related social impairment, which included difficulties shopping, expressing intimacy with a loved one, playing with children, spending time with friends, going to a restaurant or a movie, or simply enjoying life in the moment.

An unexpected finding of this survey was the chronicity of symptomatic fatigue following cancer chemotherapy. When asked whether they had experienced symptoms of fatigue every day or nearly every day during a recent two-week period of the last months, even patients who had completed therapy more than two years earlier remained significantly symptomatic: weakness, trouble concentrating, increased but nonrestorative sleep, a need to push one's self, emotional problems attributable to fatigue, and difficulty with memory were nearly as common and sometimes even more common in patients who had completed therapy more than two years earlier compared with those patients who completed therapy within the last two years.

Economic Consequences of Fatigue
Fatigue in association with cancer treatment also has important economic implications, and these involve not only the patient but also the patient's caregiver as well. Although cancer is generally considered a disease of the elderly, 59% of the surveyed patients were working when diagnosed with cancer, and cancer-related fatigue had a profound effect on their ability to work. When asked how cancer treatment affected their work schedules, more than three-quarters of patients either missed one or more days of work per month or changed their employment status. On average, patients missed 4.2 days of work per month. A substantial number of patients took unpaid family or medical leave (11%), discontinued working altogether (28%), or went on disability (23%) because of cancer-related fatigue.

Cancer-related fatigue had an impact on the caregiver's ability to work as well. Patients reported that 20% of their primary caregivers needed to take days off and 18% accepted fewer responsibilities; an additional 11% of caregivers reduced their work hours. In total, 5% of caregivers either stopped working altogether or went on disability. On average, primary caregivers missed as many days at work as the patients they attended, averaging 4.5 days per month.

The Professional Response to Fatigue
Most patients (92%) indicated that they discussed their problems with fatigue with a health-care professional, usually a physician. However, when patients sought help with cancer-related fatigue, they did not often express the full nature of their concerns, assuming that fatigue was caused by the treatment or disease or would be selflimited. Nearly half of the patients surveyed thought fatigue was a direct result of their cancer or was an untreatable symptom. Only a small percentage of these patients felt uncomfortable discussing fatigue further or feared that treatment would be changed or stopped or believed that they would be viewed as ungrateful by their caregiver. Physician recommendations in response to learning of a patient's fatigue tended to be nonspecific: 40% of physicians recommended doing nothing, followed closely by prescribing rest (37%). Only 9% of physicians in this situation used prescription drugs.

	Conclusions: Fatigue-Related Impairment in Patients with Cancer

Top Abstract Introduction FATIGUE 1 FATIGUE 2 Conclusions: Fatigue-Related... References

 
Fatigue is very common in patients receiving cancer chemotherapy and is more prolonged and causes more QOL impairment than the other common side effects of cancer therapy. Cancer-related fatigue also has substantial emotional, social, and economic costs for patients that, in the case of economic hardship, also extend to their caregivers. Unfortunately, patients have difficulty communicating to physicians the full nature of their difficulties with fatigue, a situation that might be reinforced by the nonspecific responses commonly offered by physicians. Clearly, increased professional awareness of and sensitivity to the problem of cancer-related fatigue is required.

More research is required to develop algorithms for the differential diagnosis and treatment of fatigue in patients with cancer. Progress in this area will depend on a better understanding of the prevalence, patterns, mechanisms, exacerbating factors, and treatment of fatigue.

	References

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1. Portenoy RK, Itri LM. Cancer-related fatigue: guidelines for evaluation and management. Oncologist 1999:4;1-10.[Abstract/Free Full Text]
2. Vogelzang NJ, Breitbart W, Cella D et al. Patient, caregiver, and oncologist perceptions of cancer-related fatigue: results of a tripart assessment survey. Int J Radiat Oncol Biol Phys 1997;34:4-12.
3. Curt GA, Breitbart W, Cella DF et al. Impact of cancer-related fatigue on the lives of patients. Proc Am Soc Clin Oncol 1999;18:573A.

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