A Canadian Survey of Cancer Patients Experiences: Are Their Needs Being Met?

Transcription

1 298 Journal of Pain and Symptom Management Vol. 16 No. 5 November 1998 Original Article A Canadian Survey of Cancer Patients Experiences: Are Their Needs Being Met? Fredrick D. Ashbury, PhD, Helen Findlay, MA, Barbara Reynolds, MBA, and Krista McKerracher, MBA Department of Public Health Sciences, University of Toronto (F.D.A.) Toronto, Canada; Centre for Health Studies, York University (F.D.A.) Toronto, Canada; PICEPS Consultants Inc. (F.D.A.) Toronto, Canada; Healthcare Division (H.F.), The Angus Reid Group, Toronto, Ontario, Canada; Janssen-Ortho Inc. (B.R., K.M.), North York, Ontario, Canada Abstract Cancer patients (n 913) who received treatment within the previous 2 years were interviewed to quantify reports of symptoms associated with cancer, measure the impact of symptoms on lifestyles, document experiences with accessing information and treatment for cancer and its symptoms, and record attitudes about the level of care received. Cancer patients were primarily recruited through newspaper ads placed throughout Canada and asked to complete a self-report questionnaire. Patients called a toll-free number and were interviewed to ensure eligibility. Most respondents were female (66%) with breast cancer (64%). Prostate cancer (40%) was the most common diagnosis among males. Almost all respondents (94%) reported experiencing one or more symptoms. Fatigue and anxiety were the most frequently reported symptoms (78% and 77%, respectively). Fatigue was most likely to be self-rated as moderate to severe and was most likely to interfere in normal daily activities. Respondents who experienced fatigue reported a more frequent use of healthcare services (including complementary therapies) than those who did not experience fatigue. Half of the respondents reported trying to find information on fatigue, but only half of these said they had obtained information. The most helpful sources of information were nurses, specialists, and other cancer patients. Respondents were more likely to be dissatisfied with their treatments for their symptoms than for their cancer. This survey indicates that most cancer patients experience symptoms related to the disease and its treatment. The most prevalent symptoms are fatigue and anxiety; fatigue is the most debilitating. J Pain Symptom Manage 1998;16: U.S. Cancer Pain Relief Committee, Key Words Patient survey, patient information, patient needs, cancer symptoms, questionnaire, fatigue Address reprint requests to: Fredrick D. Ashbury, PhD, PICEPS Consultants Inc., 25 Balsdon Crescent, Whitby, Ontario, Canada, L1P 1L5. This survey was supported by an educational grant from Janssen-Ortho Inc. The first author participated in this work while as Associate Director, Centre for Behavioural Research and Program Evaluation, National Cancer Institute of Canada, Toronto, Ontario, Canada. Accepted for publication: March 25, Introduction More than 413,000 Canadians are estimated to have been diagnosed with cancer in the 10- year period ending in In 1997, approximately 130,800 new cases of cancer were diagnosed and 60,700 persons died from cancer in Canada. 2 The impact of this disease remains far reaching. Certainly for the patients themselves, there are profound psychological, physi- U.S. Cancer Pain Relief Committee, /98/$ see front matter Published by Elsevier Science, New York, New York PII S (98)00102-X

2 Vol. 16 No. 5 November 1998 Canadian Survey of Cancer Patients 299 ological, and economic sequelae associated with the diagnosis and treatment of cancer and its symptoms A number of studies of cancer patients have documented patients needs and expectations prior to, during, and after their treatment Patients experiences of symptoms have been well documented, particularly within clinical trials and during the acute treatment period. Less is known about patients in the general population and those who have completed therapy. According to research undertaken in four provinces by the Canadian Cancer Society, patients expressed frustration with having psychosocial needs met, including information needs. 15 Other research has identified issues in the relationship between patients and their healthcare providers, particularly related to communication Patient satisfaction and quality of life studies have dominated a considerable amount of psychosocial research in cancer All of these studies have provided general information about cancer patients needs. However, many did not distinguish between the types of cancer, different age groups, or the effect of symptoms and how these factors may be important in the cancer experience Finally, some respondents in these studies were diagnosed and treated as much as 8 years prior to the time of the interview, and, therefore, recall bias may have been a problem. In sum, our understanding of cancer patients experiences and needs is limited and the existing information is insufficient to guide the development of policies and programs intended to meet their needs. The present study surveyed Canadian cancer outpatients who had been treated within 2 years of the time of the interview. Different cancer sites and ages of patients were represented. The survey was developed to quantify the prevalence of symptoms in a general population of cancer patients, measure the impact of those symptoms on patients lives, document issues faced by patients in accessing treatment and information, and record the attitudes of patients regarding the level of care they received. A survey was chosen as the most suitable method to gather these descriptive data. The results of this survey should expand the body of knowledge about cancer experience in Canada and, ultimately, facilitate appreciation of the ramifications of this disease for the development of future programs and services. Methods Development of Survey Instrument The process which led to the development of the final survey instrument has been reported elsewhere. 22 Briefly, in addition to a review of the literature, focus groups were used to define the issues and refine the questions used in the national survey From this qualitative input, the survey was developed and was pretested in a pilot survey of 50 patients recruited using newspaper advertisements. This was done to further refine the questions and to determine the feasibility of conducting a largescale study. Forty-three questionnaires were returned (86% return rate); however, two of the returned questionnaires did not contain enough answered questions to be included in the analysis of pretest data. The pretest substantiated the recruitment protocol and questionnaire item pool, and identified some questions for which minor changes in wording were necessary. Survey Sample Cancer patients were recruited using advertisements placed in national and local newspapers across Canada. This methodology was selected because we wanted to work with a general population sample, and was supported by the pretest. Secondly, other methods, such as random digit dialing were rejected because they were seen as an invasion of privacy, and too costly to administer to identify a sample of cancer patients who had completed their treatment. Further, recruitment through clinics would not have elicited a general population of cancer patients who had completed their treatment. Other patients became aware of the survey through regional offices of the Canadian Cancer Society and other patient-service organizations. Patients called local and tollfree numbers to volunteer, and were screened for eligibility. Eligibility criteria included having had cancer and having received treatment for cancer within the previous 2 years. In an effort to reflect the experiences of as broad a population as possible, patients were eligible regardless of the type and stage of their cancer. The 2-year eligibility window was selected to limit recall bias, recognizing that this window does not eliminate the potential for this bias. All eligible patients who responded to the newspaper ad-

3 300 Ashbury et al. Vol. 16 No. 5 November 1998 vertisements were guaranteed anonymity and sent self-report questionnaires. Survey Instrument Thirty-one questions were included in this survey. Demographic data were collected and patients experiences with cancer treatment, symptoms, and accessing information on services were measured. Symptoms that were assessed included anxiety, weight change, shortness of breath, nausea, vomiting, depression, fatigue, problems sleeping, hair loss, pain, diarrhea, problems concentrating, and constipation. Space was provided for respondents to add any other symptoms they experienced. Finally, patients attitudes and beliefs and opinions regarding physician patient interactions were explored. Four-point Likert scales were used for symptom severity, degree of impact, levels of agreement with attitude statements, and interference with ability to function. Statistical Analysis Data were collected between July 1995 and August 1, Outcome measures were tabulated, using SPSS-X, and expressed as percentages of respondents responding to questions. Summary statistics, including percentage scores, means, and standard deviations are presented. Data were summarized by region, gender, age, income, type of cancer, personal cost of treatment, length of disease, and experience of fatigue. The percentage of respondents for some response options may total more than 100% for any questions that allowed participants to provide more than one response. Bivariate analyses were done, and only statistically significant differences (P 0.05) are reported herein. Results Patients A total of 913 questionnaires were completed and returned; this represented a response rate of 82% of those patients who telephoned to volunteer their participation and were determined to be eligible. This sample size provides an estimated error rate of / 3.3%, 19 times out of 20. Participants were from all regions across Canada. The majority were urban-based (60%), female (66%), and aged 45 years and above (76%) (Table 1). At least half the respondents were either retired (31%) or worked full time (21%), were university educated (50%), and earned at least $30,000 per annum (62%). From Table 2, we see that breast cancer was the most common diagnosis in women (64%); prostate cancer was the most common diagnosis in men (40%). Thirty-one percent of breast cancer patients and 26% of prostate cancer patients had been diagnosed within 1 year of the survey. National data on the distribution of new cases of cancer by site for women and men reveal that breast cancer represents a proportion of 30.4% of all newly diagnosed cancers for women, while prostate cancer represents a proportion of 28.2% of all newly diagnosed cancers for men. 2 Seventy-six percent of the respondents had surgery, 55% received chemotherapy, 58% received radiation therapy, and 21% received Item Table 1 Respondent Profile: Demographics (n 913) Respondents n (%) Setting Urban 548 (60) Rural 356 (39) Not stated 9 (1) Gender Female 605 (66) Male 294 (32) Not stated 14 (2) Age (years) <35 64 (7) (16) (24) (27) (25) Not stated 8 (1) Employment status Full time 183 (20) Part-time 91 (10) Retired 283 (31) Disability/sick leave 128 (14) Homemaker 110 (12) Other a 109 (12) Not stated 9 (1) Education Grade school 201 (22) High school 146 (16) Technical/vocational 100 (11) Postsecondary 311 (34) Postgraduate 137 (15) Not stated 18 (2) Annual household income <$29, (34) $30,000 $79, (47) >$80, (15) Not stated 41 (4) a Unemployed, self-employed, student, volunteer, etc.

4 Vol. 16 No. 5 November 1998 Canadian Survey of Cancer Patients 301 Item Table 2 Respondent Profile: Cancer History Respondents n (%) Years since first diagnosis (n 913) <1 256 (28) (24) (29) 6 or more 146 (16) Not stated/don t know 27 (3) Most common cancer site, women (n 605) a Breast 387 (64) Lymphoma 67 (11) Ovarian 42 (7) Skin 36 (6) Lung 37 (6) Colon 35 (6) Skin 35 (6) Most common cancer site, men (n 294) a Prostate 117 (40) Lymphoma 47 (16) Colon 35 (12) Head/Neck 36 (12) Lung 21 (7) Most common treatment types (n 913) Surgery 694 (79) Radiation 530 (58) Chemotherapy 502 (55) Hormone treatments 228 (25) Complementary therapies 10 (1) a Most common refers to cancers that were reported by 5% of respondents. Several patients reported more than one cancer site. hormonal therapies. Treatment varied by type of cancer, consistent with expected patterns of treatment. Cancer-Related Symptoms Almost all respondents (94%) reported experiencing one or more symptoms. The incidence of self-reported symptoms was approximately 5 25% higher in women than men, and from 10 40% higher in those aged less than 65. Fatigue (78%), followed closely by anxiety (77%), were the most common cancer-related symptoms reported by respondents (Fig. 1). Over half of respondents also reported feelings of depression (59%) and problems sleeping (55%), and at least 40% of respondents reported symptoms of nausea, weight change, hair loss, problems concentrating, and pain. More than any other symptom, respondents experiencing fatigue rated it as either moderate (50%) or severe (37%) (Fig. 1), and indicated that it interfered either quite a bit (36%) or a great deal (21%) with their functional ability (Fig. 2) (P ). The severity ratings for fatigue were greater in women than in men (P 0.02), and higher severity ratings were reported by those less than 65 years old (P 0.006). Psychosocial Issues Overall, respondents reported that their physical condition during treatment, including the symptoms they were experiencing, affected several aspects of daily living, including their ability to work, social activities, family life, communication with family members, and their financial situation (Fig. 3). Interference with their ability to work (mean of 2.7 on a 4-point scale, from not at all to a great deal ) and with their social activities (mean of 2.6 on a 4-point scale, from not at all to a great deal ) were the two aspects rated by respondents to be the most affected. Fig. 1. Symptoms experienced (n 913). Perceived severity.

5 302 Ashbury et al. Vol. 16 No. 5 November 1998 Fig. 2. Interference of symptoms in functional ability (n 913) Regardless of the measure considered, those respondents experiencing fatigue rated their physical condition as having a greater impact on daily living than those who did not experience fatigue. Similarly, respondents experiencing fatigue rated the effect of their medical treatment as having a greater impact on daily living than those who did not experience fatigue (P 0.01). Accessing Information Not surprisingly, most respondents (92%) felt that it was very important to have information about cancer treatments. A similar percentage of respondents (90%) felt that is was important to have information about treatments for cancer-related symptoms or side effects. As illustrated in Fig. 4, respondents reported that they sought out information on a number of different cancer-related symptoms, including fatigue, anxiety, nausea, depression, problems sleeping, and hair loss. Between 35% and 56% of respondents seeking information on a particular symptom were able to find information on that symptom. Based on the information received, 77% of respondents felt that they were able to make informed decisions regarding their treatment. Respondents were more likely to seek out information on symptom management for fatigue (52%). Of those, 56% reported they had found information on that subject. Of those who had found information about managing Fig. 3. Effect of condition on quality of life.

6 Vol. 16 No. 5 November 1998 Canadian Survey of Cancer Patients 303 Fig. 4. Information seeking: Symptom management. fatigue, 55% said they were able to obtain good information. Nurses (61%), specialists (61%), and other cancer patients (60%) were reported by respondents as being very helpful sources of information on symptom management. Other healthcare providers (52%), friends or family members (52%), surgeons (51%), the Canadian Cancer Society (50%) and pharmacists (48%) were other sources of information that respondents rated as very helpful. Interestingly, only 42% of respondents rated their family doctor as a very helpful source of information on symptom management. However, 75% of respondents chose a doctor as their first choice to provide them with the information they need. Accessing Healthcare Services Respondents who experienced fatigue reported more frequent visits to healthcare practitioners in the past year compared to those who did not experience fatigue. Our results show that in the year prior to participating in the survey, respondents who experienced fatigue more frequently visited their doctor (mean of 7.3 vs. 5.9 visits), complementary therapies practitioners (mean of 3.0 vs. 1.7 visits), a community or public health nurse (mean of 2.5 vs. 0.5 visits), a pharmacist (mean of 1.2 vs. 0.6), a hospital emergency department (mean of 1.2 vs. 0.8 visits), and a walk-in clinic (mean of 1.3 vs. 0.4 visits). Use of Complementary Therapies In addition to conventional medical interventions, many respondents reported using a variety of complementary therapies (Fig. 5). Seventy-four percent (74%) of all respondents reported that they had used at least one complementary therapy. Of the many possible Fig. 5. Alternative and complementary therapy usage.

7 304 Ashbury et al. Vol. 16 No. 5 November 1998 complementary therapies available, at least 40% of respondents reported that they had used vitamins (48%), exercise (43%), or diet (40%) therapies. Other complementary therapies that were reported included herbs (28%), visualization (26%), psychotherapy (11%), and physical therapy (5%). Regardless of the specific therapy used, those respondents experiencing fatigue reported a greater use of complementary therapies than those who did not. For example, 52% of respondents experiencing fatigue reported using vitamins versus 34% of those who did not experience fatigue (P 0.01). The use of complementary therapies correlated significantly with several factors: female gender, age less than 65 years, higher income, and cancer site (breast, lymphoma). Financial Issues Many respondents did not answer the question asking whether they would be willing to spend more, less, or the same than they currently pay to achieve total relief of symptoms they had experienced. Depending on the symptom, between 34% and 67% of eligible respondents either declined to answer or stated that they were unsure. Of those completing this question, respondents were most willing to pay more for total relief of pain (30% of respondents). The order in which respondents rated their willingness to pay more for relief of symptoms was pain (30%), vomiting (24%), nausea (22%), depression (21%), problems sleeping (20%), and fatigue (17%). In responding to the following statement: I think people who can afford it, should have the choice if they want to pay for a drug that is not covered by the hospital, nearly 6 of 10 respondents (59%) strongly agreed that patients should have this choice. Expectations and Experiences with Decision-Making Patients experiences with treatment decisionmaking did not match their needs. Twenty percent (20%) of respondents reported that their doctor had total control over their treatment decisions, whereas only 6% of respondents felt that their doctor should have that level of control. While only 38% of respondents reported that decision-making was shared equally with their doctor, most respondents (69%) expressed the belief that treatment decisions should be shared equally. Concerns Respondents identified four main issues that were of greatest concern to them: 66% of respondents reported that they were very concerned about being diagnosed without undue delay; 48% reported that they were very concerned about being involved in treatment decisions; 42% reported that they were very concerned about doctors attitudes towards their patients; and 35% were very concerned about getting appointments. Thirty-three percent (33%) of respondents rated being diagnosed on time as their most important single concern. Satisfaction Measures of satisfaction found that of 13 different aspects of treatment experience, respondents reported they were the most satisfied with the quality of the care they received to treat their cancer (73% were very satisfied). Respondents were less satisfied with the quality of treatment they received for their symptoms (46% were very satisfied) than for the cancer itself. Respondents were least satisfied with the information they received about complementary therapies (only 11% were very satisfied, 23% were very dissatisfied). Discussion This survey of cancer patients suggests that significant numbers of patients are experiencing symptoms and side effects of their cancers and the treatments they received for their cancers. Appropriate management of their symptoms and access to quality information about treatments and symptoms appear to be pervasive problems. Fatigue and anxiety were the most prevalent symptoms reported. Fatigue was the most likely symptom to be described as moderate to severe, interfering with normal functional ability, and having a greater impact on daily living. Respondents who experienced fatigue reported a more frequent use of healthcare services and of complementary therapies than those who did not experience fatigue. Overall, respondents were very satisfied with the quality of care they received to treat their cancer, although they did indicate that they would prefer a greater level of involvement in making treatment decisions. Compared to the treatment received for their cancer, more respondents were dissatisfied with the quality of treatment they received for their symptoms.

8 Vol. 16 No. 5 November 1998 Canadian Survey of Cancer Patients 305 There appears to be a need for better, more accessible information on symptoms and symptom management. This type of information was as important to respondents as information about cancer and its treatment. Despite the reported incidence of symptoms, many respondents were unable to find good information. Nurses, specialists, and other cancer patients were judged by respondents to be the most helpful sources of information, but most indicated that they would prefer information to come from their physician. Findings in the present survey concerning fatigue are consistent with other research. It is only in the last few years that fatigue has begun to be recognized as the most frequently reported symptom of cancer and cancer treatment In a 1989 study of 238 patients with breast cancer or malignant lymphoma, only 8% had anticipated experiencing fatigue compared to 86% of patients who actually did. 25 In a 1992 study, not only did 87.5% of patients who were receiving chemotherapy for breast cancer experience fatigue, but they rated tiredness as the most difficult aspect of their treatment. 26 And, in a recently completed and as yet unpublished US survey, 78% of patients who had received chemotherapy and/or radiation reported experiencing fatigue. 27 One-third of these patients reported that fatigue significantly affected their daily routine; two-thirds reported that fatigue affected their everyday life more than pain. Fatigue has proven to be the most common cancer-related symptom, regardless of the stage of illness, type of treatment, or treatment setting. The impact of this observation has not been fully explored and there are very few published studies which have addressed the prevention and treatment of this debilitating symptom. Fatigue interventions that have demonstrated varying degrees of success include self-care behavior, coping strategies, nursing interventions, education, exercise, and attention-restoring activities. 28 Yet, it seems that patients who experience fatigue are not made aware of these possible approaches to manage the symptom and its effects. There are cost implications associated with fatigue. Respondents who reported fatigue as a symptom more frequently accessed healthcare services, both conventional and complementary. They also reported that their condition had a greater impact on their ability to work than those without fatigue. While respondents were most willing to pay more for total relief of pain (30%), 17% were willing to pay more for total relief of fatigue. This observation may reflect a view that fatigue is simply an inevitable symptom of cancer, and that neither the doctor nor the patient believe there is much that can be done to treat it. In our attempt to learn more about cancer patients willingness to pay for treatment and symptom management, as many as two-thirds of respondents did not answer or were unsure about the willingness to pay questions. This may be a result of the fact that, in Canada, medication costs are largely covered under private or publicly funded drug reimbursement plans, and, as such, the questions were perhaps not relevant to many respondents. Of those who did respond to these questions, however, we found it interesting that respondents most strongly agreed with the view that people who can afford it should have the choice of paying for a drug that is not covered by the hospital and that information on treatment should not be withheld by doctors based on the cost of therapy. These attitudes may suggest that these respondents are in favor of having a medical system in which those who can afford to pay would have access to whatever treatments they can afford. There are a few factors which may limit the generalizability of these results. Because women and younger respondents reported a higher incidence of symptoms, it is possible that symptom assessment using survey methods may lead to an underreporting of symptoms by both men and the elderly. Other limiting factors include the self-selection of patients to participate in this survey, and a response bias in favor of certain disease sites and geographical locations. Finally, about 45% of those who responded to this survey had been diagnosed for their cancers 3 or more years ago. Our recruitment protocol selected those who had been treated for their cancers within the previous 2 years, and this suggests that a significant percentage of patients in our study may have been patients with prolonged experiences with their disease, including treatment, and patients who are experiencing a recurrence, metastic disease, or that they had more than one primary cancer. We acknowledge that these situations may result in different needs and experiences, as Holland and Rowland have attempted to identify. 29

9 306 Ashbury et al. Vol. 16 No. 5 November 1998 Conclusions Better treatment for, and greater access to information about, the symptoms of cancer, especially fatigue, are needed. Fatigue and anxiety are the most common symptoms related to cancer and its treatment; fatigue is the most debilitating. Acknowledgment The research team wishes to thank Dr. Sharon Campbell of the Alberta Cancer Board for her help in promoting the study to recruit patients, and Anneke Jonker for her help in preparing the manuscript. References 1. National Cancer Institute of Canada. Canadian cancer statistics. Toronto, Canada, National Cancer Institute of Canada. Canadian cancer statistics. Toronto, Canada, Holland JC, Mastrovito R. Psychologic adaptation to breast cancer. Cancer 1980;46: American Cancer Society. Psychosocial issues and cancer. CA Cancer J Clinicians 1988;38: Damian D. Letters to patients: improving communication in cancer care. Lancet 1991;338: Dimatteo MR, Hays RD, Gritz ER, Bastani R, Crane L, Elashoff R, et al. Patient adherence to cancer control regimens: scale development and initial validation. Psychol Assess 1993;5: Lerman C, Daly M, Walsh WP, Resch N, Seay J, Barsevick A, et al. Communication between patients with breast cancer and health care providers: determinants and implications. Cancer 1993;72: Aistairs J. Fatigue in the cancer patient: a conceptual approach to a clinical problem. Oncol Nursing Forum 1987;14: Foote M, Sexton DL, Pawlik L. Dyspnea: a distressing sensation in lung cancer. Oncol Nursing Forum 1986;13: Triozzi PL, Laszlo J. Optimum management of nausea and vomiting in cancer chemotherapy. Drugs 1987;34: Foley K. The treatment of pain in the patient with cancer. CA Cancer J Clinicians 1986;36: Guadognali E, Mor V. Daily living needs of cancer outpatients. J Community Health 1991;16: Mor V, Allen S, Siegel K, Houts P. Determinants of need and unmet need among cancer patients residing at home. Health Services Res 1992;27: Knobf M. Symptoms and rehabilitation needs of patients with early stage breast cancer during primary therapy. Cancer 1990;66(suppl): The Canadian Cancer Society. Final report on the needs of people living with cancer across Canada. Toronto, Canada Wilkinson S. Factors which influence how nurses communicate with cancer patients. J Advanced Nursing 1991;16: Weinberger M, Greene JY, Mamlin JJ. The impact of clinical encounter events on patient and physician satisfaction. Social Sci Med 1981;15E: Taylor KM. Telling bad news: physicians and the disclosure of undesirable information. Sociology Health Illness 1988;10: Cassileth BR, Volckmar D, Goodman RL. The effect of experience on radiation therapy patients desire for information. Int J Radiat Oncol Biol Phys 1980;6: Blanchard CG, Ruckdeschel JC, Fletcher BA, Blanchard EB. The impact of oncologists behaviors on patient satisfaction with morning rounds. Cancer 1986;58: Osoba D, ed. Effect of cancer on quality of life. Boca Raton, FL: CRC Press; Ashbury FD, Lockyer L, McKerracher K, Findlay H. Step one to a more comprehensive understanding of the cancer experience: group interviews with cancer patients. In press. 23. Rossi P, Wright J, Anderson A, eds. Handbook of survey research. New York: Academic Press; Ashbury FD, Gospodarowicz M, Kaegi E, O Sullivan B. Focus group methodology in the development of a survey to measure physician use of cancer staging systems. Canadian J Oncol/Cancer Control Res 1995;5: Love RR, Leventhal H, Easterling DV, Nerenz DR. Side effects and emotional distress during cancer chemotherapy. Cancer 1989;63: Tierney AJ, Taylor J, Closs SJ. Knowledge, expectations and experiences of patients receiving chemotherapy for breast cancer. Scand J Caring Sci 1992;6: Vogelzang N, Breltbart W, Cella D, Portenoy R, Horning S, Johnson D, Scherr, S, Parkinson D, Groopman J, Itri L (The Fatigue Coalition, TFC). Patient, caregiver and oncologist perceptions of cancer related fatigue: results of a tripart assessment survey. Paper presented at the annual conference of the American Society of Clinical Oncology, Denver, CO. 28. Winningham ML, Nail LM, Burke MB, Brophy L, Cimprich B, Jones LS, et al. Fatigue and the cancer experience: the state of the knowledge. ONF 1994;21: Holland CH, Rowland JH. Handbook of psycho oncology: psychosocial care of the patient with cancer. Oxford: Oxford University Press, 1990.