The Oncologist The Status of Cancer Fatigue on the Island of Ireland: AIFC Professional and Interim Patient Surveys EILEEN DILLON, a JOAN KELLY b,c a Belfast City Hospital, Belfast, Northern Ireland; b Irish Cancer Society, Dublin, Ireland and c Irish Association for Nurses in Oncology, Dublin, Ireland Key Words. Cancer Fatigue Quality of life Current management ABSTRACT The objectives of the All Ireland Fatigue Surveys are: A) to learn more about the nature of cancer patients fatigue; B) to explore the impact that fatigue has on the lives of these patients; C) to determine physicians and nurses perceptions of fatigue in patients; and D) to find the current level of management of cancer fatigue in Ireland. In two surveys, one involving 9 physicians and another involving 160 nurses, the vast majority of respondents reported that they believe nausea to be the side effect of most concern to their cancer patients. In contrast, 41% of 143 patient respondents to a third survey reported that fatigue was the side effect that had the greatest impact on them. Patients indicated that fatigue affected them physically, mentally, emotionally, and economically. Yet, approximately half the patients who reported their fatigue to their physician or nurse received no treatment to relieve their fatigue. The number one recommendation made to patients who did receive treatment to help reduce their fatigue was rest/relaxation, even though research suggests that exercise can be of greater benefit. Thus, it appears that cancer patients fatigue has been largely under-recognized and poorly managed or ignored. With the formation of interdisciplinary groups of health care professionals focused solely on cancer fatigue, efforts are under way on the island of Ireland to address this too long misunderstood and neglected aspect of cancer patients lives. The Oncologist 2003;8(suppl 1):22-26 INTRODUCTION Cancer patients want to talk about their fatigue experiences. Mary, for example, is a 65-year-old woman with stage IV ovarian cancer. She believes that she would feel normal if she did not experience fatigue. Her description of feeling normal reveals how very limiting the experience of fatigue can be: When I feel normal, I can plan my life more than a day ahead. I can take on challenges. I can enjoy being with people instead of finding them annoying. I can enjoy physical activities such as yoga and swimming. I can think straight and express myself clearly. I can, most importantly, take responsibility for my own life. It took Mary 2 hours to fill in the fatigue questionnaire, and afterward, she expressed gratitude for the opportunity to share her experience of fatigue with someone. The objectives of the All Ireland Fatigue Surveys, conducted under the auspices of the All Ireland Fatigue Coalition (AIFC), are to learn more about the nature of cancer patients fatigue, to explore the impact that fatigue has on the life of cancer patients, to determine physicians and nurses perceptions of cancer fatigue, and to find the current level of management of fatigue on the island of Ireland. Three separate survey instruments on fatigue were designed: one for physicians, one for nurses, and one for patients. Questionnaires were mailed to a sample of two professional groups in Northern Ireland and the Republic of Ireland: physicians and oncology nurses. The physicians came from a number of different specialties: Correspondence: Ms. Eileen Dillon, Clinical Research Nurse, Northern Ireland Cancer Clinical Trials Unit, East Podium, C Floor, Belfast City Hospital, Lisburn Road, Belfast BT9 AB, Northern Ireland. Telephone: 44-2890-263903; Fax: 44-2890- 26389; e-mail: eileen.dillon@bch.n-i.nhs.uk Received January 14, 2003; accepted for publication January 1, 2003. AlphaMed Press 83-159/2003/$5.00/0 The Oncologist 2003;8(suppl 1):22-26 www.theoncologist.com
Dillon, Kelly 23 hematology, medical oncology, radiation oncology, clinical oncology, palliative care, and surgical oncology. In the professional surveys, 9 physicians and 160 nurses participated. The third component of the survey focuses on patients. Participants for the patients survey are currently being recruited in Northern Ireland and the Republic of Ireland specifically in the Belfast City Hospital, which incorporates Belvoir Park Hospital, The Marie Curie Centre in Belfast, and St. James s and St. Luke s Hospitals in Dublin. Recruitment will begin in Galway at the University College Hospital in the near future. Patients are recruited by direct request when they attend their investigators clinic. The target recruitment number is 400-500 patients. The results of the patient survey in this report come from the first 143 patients recruited (Table 1). RESULTS OF SURVEYS TO DATE Side Effects of Most Concern to Patients The majority of physicians and nurses reported nausea as the side effect that they believed concerned their cancer patients the most. Hair loss ranked second highest in the physicians perceptions; fatigue ranked second highest in the nurses perceptions. In contrast, nearly half the patients (41%) reported fatigue as the side effect that affected them the most during treatment. Only 12% of patients reported that nausea affected them the most and only 8% reported that hair loss affected them the most (Fig. 1). When patients were asked which side effect affected them the most after treatment, fatigue was again reported as affecting them the most (39%), again followed by nausea (12%) and hair loss (4%). These findings suggest that physicians and nurses are underestimating the impact that cancer-related fatigue has on their patients. The fact that the nurses ranked fatigue as the second most significant side effect, while physicians ranked fatigue third, suggests that the nurses may have had a somewhat greater understanding of fatigue s impact on cancer patients. Both professional groups agreed that patients experienced fatigue, regardless of whether they reported it. Physicians and nurses were in agreement that patients mentioned their fatigue on most visits, but nurses when compared with physicians reported that over twice as many patients mention their fatigue at every visit. Therefore, it would appear that these cancer patients reported their fatigue to nurses more frequently than to physicians. The patients themselves reported that they discussed their fatigue with physicians and nurses to a similar extent, although more than 15% of patients did not discuss their fatigue with anyone. When discussing diagnosis and treatment options, more than half the patients reported that Table 1. Baseline characteristics of patients Characteristic (n = 143) Sex Male 64% Female 32% Not specified 3% Age (years) Mean 58.3 Range 21-82 Malignancy Gastrointestinal 36% Gynecological 2% Breast 15% Lung % Genitourinary 5% Leukemia/lymphoma 5% Other 15% Treatment (n of patients)* Chemotherapy 81 Surgery 52 Radiotherapy 24 Hormonal 5 Not stated * Multiple answers possible. fatigue was mentioned as a possible side effect following treatment, but only 29% of patients reported that fatiguerelieving strategies were discussed with them. Effects of Fatigue on Patients Lives Eighty-four percent of patients reported having fatigue of some sort. Fifty-five percent actually experienced fatigue every day or on most days. When asked how long their bouts of fatigue lasted, 18% of patients reported that their bouts of fatigue lasted less than 1 day. Of this 18%, however, more than one quarter reported that fatigue had a significant effect on their lives. The survey also revealed that Fatigue Nausea Hair loss Mouth sores Diarrhea/constipation Pain 2 Anemia 2 Appetite loss/gain 2 Taste 1 Weight loss/gain 1 Other 2 % 8 Figure 1. Key side effects cancer patients experienced during treatment. 12 41
24 Status of Cancer Fatigue on the Island of Ireland: Surveys No energy/tired/exhaustion Can't do what I used to do Lack of interest/no drive to do anything Not feeling good Irritable Headaches/body aches/ailments Other Don't know 22 16 13 8 the longer the bouts of fatigue lasted, the more significant was the overall impact of fatigue on respondents lives. No energy, tired, and exhaustion were the most common expressions used by patients who described their fatigue (Fig. 2). These expressions were closely followed by can t do what I used to do and, in descending order, lack of interest, no drive to do anything, not feeling good, irritable, headaches and body aches, and ailments. Others included poor concentration, need to sit and rest, a bit down, and memory loss. On the patient survey, 86% of respondents reported being very or somewhat physically active before diagnosis and treatment. After treatment, 82% of patients said that they had significantly or somewhat changed their daily routine. In addition, patients reported which activities they found more difficult when they were experiencing fatigue. Simple things like climbing stairs and using the bathroom became more difficult. Nearly half the patients found it 34 51 Other includes: Poor concentration Need to sit and rest A bit down Memory loss Figure 2. Expressions used by cancer patients to describe fatigue. 6 more or somewhat more difficult to be optimistic or hopeful about their progress or survival. Therefore, cancerrelated fatigue had an enormous physical impact on these cancer patients lives (Fig. 3). Patients also reported that fatigue had significant mental and emotional effects. Forty-five percent of patients felt that they would never feel normal again. Ten percent reported that, on occasion, they just wanted to die. They asked themselves, What does the future hold? Is there a point in living? As one patient described the feelings, On my worst day with fatigue, I feel just like staying in bed all day with no one to bother me, feeling I d have been better not surviving surgery. The survey also addressed patients employment status preceding diagnosis and the changes that they had made as a result of fatigue. Of the respondents who were selfemployed or working full time for an employer, 52% had accepted fewer responsibilities, 44% had reduced the number of hours that they worked, and over half (54%) had found it necessary to stop working altogether. It is important to note that the patients fatigue also affects the caregivers. Of these, 34% took days off, 22% accepted fewer responsibilities than they normally would have accepted, 23% reduced the number of hours that they worked, and 8% had to stop work altogether. One caregiver actually lost a business. These results indicate that cancer-related fatigue has an economic impact on cancer patients lives. Treatments to Relieve Fatigue This survey also examined the treatment of fatigue and Climbing stairs 29 33 20 18 Yes, a lot more difficult Doing general household chores Preparing food/eating meals Using the bathroom 32 3 1 13 23 33 28 16 8 15 62 15 Yes, somewhat more difficult No, no more difficult Concentrating or paying attention to things Being optimistic or hopeful about progress and survival 22 34 2 16 15 28 41 1 Don't know/not applicable A lot more difficult Less difficult Figure 3. Activities found to be more difficult when cancer patients have fatigue.
Dillon, Kelly 25 Figure 4. Recommendations by physicians and nurses for cancer patients experiencing fatigue. EPO = erythropoietin. revealed that over half of the physicians believed that fatigue was something that patients must live with. In comparison, the majority of nurses (0%) believed that fatigue was something that could be relieved. According to the survey, more nurses than physicians reported that they had prescribed treatments to relieve patients of fatigue. Unfortunately, the professional survey indicates that approximately half the patients who experienced fatigue and reported it to their physician or nurse, received no treatment to relieve their fatigue. Physicians and nurses reported that their number one recommendation for patients experiencing fatigue was rest, followed closely by exercise. More nurses than physicians reported recommending diet and complementary therapy for patients who experienced fatigue. More physicians than nurses, not surprisingly, reported recommending prescription drugs and erythropoietin for such patients (Fig. 4). Patients reported rest/relaxation as the number one recommendation that they had received to help reduce their fatigue, even though research indicates that exercise can improve various quality-of-life parameters, including fatigue [1, 2]. There is some evidence to suggest benefit from the other recommendations that the patients received to help reduce their fatigue [3, 4]. Despite this, very few patients were offered those recommendations. It is very worrying to note that 38 patients received no recommendations. Furthermore, patients very rarely received more than one intervention for their fatigue management (Fig. 5). There appears to be a difference of opinion about the importance of treating fatigue, when cancer patients complain of this symptom. The majority of nurses (9%) surveyed believed that it Figure 5. Recommendations received by cancer patients to help reduce fatigue. % of respondents 0 90 80 0 60 50 40 30 20 0 Exercise Rest Prescription Diet Complementary EPO Other drugs therapy Rest/relaxation Nothing/no recommendation/prescription Diet/nutrition Exercise Transfusion Reduce activity Vitamins Prescription drugs-iron Antidepressants Other prescription drugs Other prescription drugs-erythropoietin Other Don't know/not stated Physicians Nurses Multiple answers possible was very important to treat fatigue, whereas the majority of physicians (54%) believed it was somewhat important. Despite those beliefs, the survey indicates that cancer patients fatigue has largely been poorly managed or ignored. CURRENT AND FUTURE PLANS Under the auspices of the AIFC, a multidisciplinary fatigue team was formed in June of 2002 in the Northern Ireland Cancer Centre, including health care professionals from Belfast City Hospital and Belvoir Park Hospital in Belfast. This team has developed aims, objectives, and professional standards in the management of cancer-related fatigue. A parallel multidisciplinary team is currently being formed in the Republic of Ireland, with health care professionals from St. Luke s Cancer Centre and St. James s Hospital and staffed by a fatigue coordinator appointed in the fall of 2002. Another fatigue coordinator position was recently created for the Western Health Board area of Ireland, thus extending the geographic reach of a coordinated effort in the Republic of Ireland. The AIFC is promoting the proactive management of cancer-related fatigue in Irish cancer patients through professional 13 6 5 4 3 1 38 46
26 Status of Cancer Fatigue on the Island of Ireland: Surveys education, patient awareness and education, and patient advocacy. The patient and professional surveys, whose initial findings are reported in this paper, are an important first step in assessing needs and developing solutions. The professional surveys reported in this paper were conducted with physicians and oncology nurses from the North and South, and these are completed. The teams are now in the process of extending professional surveys to include other disciplines whose professionals are involved in the care of cancer patients, including physiotherapy, occupational therapy, dietetics, and clinical psychology. The patient surveys are still in process. The interim data for this paper came from 143 patients: 12 from Northern Ireland and 16 from the Republic of Ireland. The goal is to have data from a total of 400-500 patients, fairly evenly distributed between the North and South. The Irish Association for Nurses in Oncology (IANO) is one organization that is taking a leading role to promote professional development in the area of cancer fatigue. With its four regional branches, the IANO has a considerable network of nurses around Ireland to begin to address these issues and has plans to focus first on nurse education, with patient education and awareness following in the next year. Think-tank sessions and workshops that will help to identify nurses educational needs in regard to cancerrelated fatigue will be the first step in nurse training. The Training the Trainers model, from the Learning to Live with Cancer Program developed by Professor Gertrud Grahn of Lund University in Sweden, may be the model used by the IANO, as it has been used successfully in the past. Nurses involved in palliative care nursing, in addition to oncology nurses, will be involved in the training, as they have important roles to play in the management of fatigue. With regard to patient awareness, the IANO has links with the European Oncology Nursing Society and with the Oncology Nursing Society in America and will be looking at the models that these groups have used successfully, with the intent to share information and learn from colleagues who have developed initiatives abroad. In addition, the Irish Cancer Society has recently re-edited a version of the CancerBACUP patient education booklet on cancer-related fatigue with an unrestricted educational grant from Ortho Biotech and has begun distribution to all oncology units throughout the country. This will be a very helpful tool in expanding awareness of fatigue, useful for patients and caregivers alike. Copies of the booklet are available free of charge from the Irish Cancer Society. CONCLUSION Cancer-related fatigue is the key side effect reported by cancer patients on the island of Ireland. It has a significant impact on patients lives, irrespective of the duration of their fatigue. A patient survey revealed that fatigue has enormous physical, mental, emotional, and economic impacts for cancer patients and their families. In comparison, professional surveys indicate a dramatic underestimation of the effect that fatigue has on cancer patients lives. Although they were more aware of the problem than physicians, nurses who participated in this survey were not being proactive in fatigue management, as evidenced by the finding that the majority of cancer patients received either a fatigue intervention that could actually compound their fatigue experience or none at all. As a result of these surveys, we have uncovered an immense, poorly understood, and badly managed side effect suffered by the majority of cancer patients in Ireland. It is our duty, as health care professionals, to urgently address this symptom. REFERENCES 1 Mock V, Dow KH, Meares CJ et al. Effects of exercise on fatigue, physical functioning, and emotional distress during radiation therapy for breast cancer. Oncol Nurs Forum 199;24:991-00. 2 Dimeo FC. Effects of exercise on cancer-related fatigue. Cancer 2001;92(suppl):1689-1693. 3 Nail LM. Fatigue in patients with cancer. Oncol Nurs Forum 2002;29:53-546. 4 Portenoy RK, Itri LM. Cancer-related fatigue: guidelines for evaluation and management. The Oncologist 1999;4:1-.