Elusive cancer-related fatigue is easy to conquer with the right education
Awareness, causes, and assessment are key
Awareness of cancer-related fatigue is the first step to managing its symptoms, according to experts. Medical staff, cancer patients, and the general public need to know that it might impact from between 75% to 90% of the cancer population and should be assessed, says Marnie McHale, RN, MS, AOCN, manager of community relations at the Robert H. Lurie Comprehensive Cancer Center at Northwestern University in Chicago.
"It is almost a universal side effect when a person is on active cancer treatment such as chemo-therapy or radiation. It is a rarity when they don’t experience fatigue," she says. (To learn more about educational resources, see source box at the end of this article.)
Most people think of fatigue from a physical standpoint not realizing that symptoms can be cognitive, emotional, and social as well; therefore, they fail to recognize it and seek help, says McHale. Patients and health care workers need to learn the four major areas where symptoms might be identified. Physically, people often report a total body tiredness with lack of strength in their arms and legs. For example, they may not have the strength to lift a toothbrush.
Cognitively, they may experience difficulty in retaining information, making decisions, or solving problems. "They feel like their brain is fogged up by the cancer treatment they are receiving," explains McHale. At an emotional level, fatigue can result in irritability, impatience, sadness, anxiety, and depression. Fatigue also can impact people socially, causing them to withdraw or pull back from their relationships because they don’t have the energy to enjoy the company of others.
It’s important to help patients address the symptoms of fatigue caused by cancer and its treatment because it affects the whole person and can greatly impact quality of life. It can impede the healing process in many ways, says Susan Scritchfield, MA, MSW, LISW, coordinator of consumer health education at the James Cancer Hospital and Solove Research Institute in Columbus, OH.
Although fatigue has a high impact on the functional well-being of an individual and leads to emotional distress, it is very underreported. "Often, fatigue can be mistakenly diagnosed as one of its outcomes — depression — unless it is carefully explored," says Scritchfield.
The best tool to combat fatigue is education
of health care providers and their patients, says Andrea M. Barsevick, DNSc, RN, AOCN, director of nursing research and education at Fox Chase Cancer Center in Philadelphia. "One of the things our patients tell us when we interview them is they don’t want to tell their health care providers they are fatigued because they are worried they will cut back on their treatment," she says. Also, patients worry that the fatigue is a sign their cancer is progressing and they don’t want to face that possibility, or that the fatigue isn’t really that important.
In an effort to allay some of the fears, it might be best to educate patients about what to expect, especially when the fatigue is treatment-related, says Barsevick. Let them know when they might experience the fatigue and what the pattern is likely to be. "We know that patients adapt much better if they can get information up front in a preparatory kind of way instead of having to discover it themselves through trial and error," she explains.
To help educate patients about cancer fatigue and how to identify it, an interdisciplinary group at the James Cancer Hospital and Solove Research Institute created a pamphlet, which provides ideas for self-assessment. In addition, it gives many different interventions patients experiencing cancer-related fatigue might try to improve their quality of life, says Molly Moran, MS, RN, CS, a hematology/medical oncology clinical nurse specialist at the hospital.
For example, have patients keep a log to determine what activities might sap their strength or identify the time of day they have the least energy so they can plan accordingly. (For information about the steps that should be taken to help cancer patients address their fatigue, see article on p. 16.)
Determining which intervention works best
While many interventions currently are being used, research has not yet proven whether they are effective. Barsevick is conducting a study on energy conservation and activity management to determine if there is any reduction in fatigue or improvement of quality of life as a result. To help patients best plan the use of their energy resources to minimize the effect of fatigue on their life, they are asked to keep a diary for one week. In the diary, they note when they are the most and the least fatigued and what symptoms they are having.
"At the end of the week, we help them plan a schedule that makes sense based on their energy levels," says Barsevick. They are taught to prioritize activities, delegate to others, and how to be the most active at the times they have peak energy.
Often, physicians and nurses tell patients who complain of fatigue to cut back on activities and prioritize tasks. "We have no clue if it is helpful to patients; so that is one reason why we are evaluating it in this research," says Barsevick.
Anna Schwartz, PhD, ARNP, associate professor at Oregon Health Sciences University School of Nursing in Portland, has found that low-intensity to moderate exercise can help to manage cancer-related fatigue. "Exercise is kind of counterintuitive; they think that if they are tired, they shouldn’t exercise because it will make them more tired. What we found consistently — not only in my research — but research by others in this country and in Europe, is that exercise actually did give them more energy and reduces their fatigue," says Schwartz.
The research also determined that cancer patients who don’t exercise have a chaotic fatigue pattern, making it difficult to manage. Those who exercise have a much more orderly pattern to their fatigue.
Schwartz helps patients create an exercise program according to their fitness level, making adjustments to the intensity at the times they will be receiving chemotherapy. "The message they get from many physicians is to go home and rest; and what we are clearly learning is that is the wrong thing to be telling patients. They get very debilitated from that; and if they get another illness, they don’t have as much reserve to combat it," she says.
Sources and resources
For additional information about educating people about cancer-related fatigue, contact:
• Andrea M. Barsevick, DNSc, RN, AOCN, Director of Nursing Research & Education, Fox Chase Cancer Center, 7701 Burholme Ave., Philadelphia, PA 19111. Telephone: (215) 728-3578. Fax: (215) 728-3008. E-mail: [email protected].
• Grace Dean, RN, MSN, Research Specialist, City of Hope National Medical Center, 1500 Duarte Road, Duarte, CA 91010. Telephone: (626) 359-8111, ext. 3489. Fax: (626) 301-8941. E-mail: [email protected].
• Marnie McHale, RN, MS, AOCN, Manager of Community Relations, Robert H. Lurie Comprehensive Cancer Center of Northwestern University, 303 E. Chicago Ave., MSN505, Chicago, IL 60611-3093. Telephone: (312) 503-2584. Fax: (312) 503-1663. E-mail: m_mchale@ northwestern.edu.
• Molly Moran, MS, RN, CS, Hematology, Medical Oncology Clinical Nurse Specialist, James Cancer Hospital and Solove Research Institute, Room 004, 300 W. 10th Ave., Columbus, OH 43210. Telephone: (614) 293-3462. E-mail: [email protected].
• Anna Schwartz, PhD, ARNP, Associate Professor, Oregon Health Sciences University School of Nursing, 3181 S.W. Sam Jackson Park Road, SN-ORD, Portland, OR 97201-3098. Telephone: (503) 494-3856.
• Susan Scritchfield, MA, MSW, LISW, Coordinator, Consumer Health Education, James Cancer Hospital and Solove Research Institute, Nursing Staff Development and Patient Education, Room 004, 300 W. 10th Ave., Columbus, OH 43210. Telephone: (614) 293-3259. E-mail: [email protected].
For additional information on cancer fatigue contact:
• National Comprehensive Cancer Network (NCCN), 50 Huntingdon Pike, Suite 200, Rockledge, PA 19046. Telephone: (215) 728-4788. Fax: (215) 728-3877. Web: www.nccn.org.
A set of copyrighted guidelines for managing cancer-related fatigue established by the NCCN can be obtained by sending a written request with your name, organization, complete mailing address, telephone number, and information on how you intend to use the guidelines to:
• Oncology Nursing Society, 501 Holiday Drive, Pittsburgh, PA 15220-2749. Telephone: (412) 921-7373. Fax: (412) 921-6565. Web: www.ons.org. Helps sponsor cancer fatigue-related site. Web: www.cancerfatigue.org.
• National Cancer Fatigue Awareness Day, April 5, 2001. This educational event, sponsored by the Oncology Nursing Society, was created to increase awareness of cancer fatigue. Order a free planning kit from the Oncology Nursing Society by calling (412) 921-7373.
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