Multidimensional Problems Among Advanced Cancer Patients in Cuba: Awareness of Diagnosis Is Associated with Better Patient Status

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1 Vol. 37 No. 3 March 2009 Journal of Pain and Symptom Management 325 Original Article Multidimensional Problems Among Advanced Cancer Patients in Cuba: Awareness of Diagnosis Is Associated with Better Patient Status Ivan Justo Roll, MD, Victoria Simms, BSc, MSc, and Richard Harding, BSc (Joint Hons), MSc, PhD, DipSW Tomás Romay Health Center (I.J.R.), La Habana Vieja, Cuba; and Department of Palliative Care, Policy & Rehabilitation (V.S., R.H.), King s College London, School of Medicine, London, United Kingdom Abstract Cancer is one of the major causes of death in Cuba, and in current practice, patients are not usually informed of their diagnosis. Palliative care is an emerging discipline in this country. Cuban cancer patients with advanced disease completed the Palliative Outcome Scale (POS), and the researcher elicited patients knowledge of their condition and prognosis. The POS consists of 12 items that address the clinical, psychosocial, spiritual, family, and service delivery elements considered relevant to patients with advanced disease. Ten items are scored 0 (no problem) to 4 (worst problem), with one open-response question about the main problems experienced and one question about whether the questionnaire was completed with help or alone. Mann-Whitney tests were used to compare POS item scores by patient awareness. Of the 91 patients who participated in the study, 41% knew they had cancer and 9% were believed to be aware that they were dying. The most burdensome problems recorded on the POS were wasted time on appointments (70% of patients scored 3 or 4), pain (42%), patient anxiety (39%), and family anxiety (37%). Those patients who were aware of their diagnosis had statistically significantly better scores with respect to symptoms, patient anxiety, receiving information, and receiving support from family and friends. This study adds to knowledge about characteristics of terminal cancer patients in Cuba and the factors contributing to patient burden. It is the first study to explore the palliative care needs of Cuban patients with advanced cancer. An association has been demonstrated between patient knowledge and quality of life in Cuba, a setting where disclosure is contrary to current clinical practice. J Pain Symptom Manage 2009;37:325e330. Ó 2009 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Advanced cancer, Cuba, palliative care, patient awareness Address correspondence to: Victoria Simms, BSc, MSc, Department of Palliative Care, Policy and Rehabilitation, King s College London School of Medicine, Weston Education Centre, Cutcombe Road, London SE5 9RJ, United Kingdom. vicky.simms@ kcl.ac.uk Accepted for publication: February 22, Ó 2009 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved. Introduction Cancer, primarily of the lung, prostate, colon, breast, and stomach, is one of the major causes of death in Cuba, alongside heart disease and cerebrovascular diseases, and results in 13,000e14,000 deaths per year. 1 The /09/$esee front matter doi: /j.jpainsymman

2 326 Justo Roll et al. Vol. 37 No. 3 March 2009 proportion of hospital admissions due to cancer has increased continuously, from 3% in 1999 to 8% in In Ciudad La Habana province, only 28.3% of cancer patients die at home. 3 A literature search intersecting Cuba with palliative/terminal/end of life/cancer death found no data (MEDLINE October 1966e2006) on the needs or experiences of patients with advanced malignant disease in Cuba. Cuba has developed some palliative programs in response to the increasing rate of cancer deaths, 4 and a National Pain Management and Palliative Care Program was set up in line with World Health Organization guidelines in 1992, 5 but there has been no research to guide this development. Identified problems include insufficient public and palliative care infrastructure, myths about opioids, lack of professional education, and stigmatization around cancer and death. 4,6,7 International restrictions on the import and export of medications also have been described as a key barrier to care by health care providers. 5 One of the most common problems identified by palliative care professionals in Latin America is that patients receive inadequate information about their diagnosis or prognosis. 7 In many settings, it is considered unethical to inform patients of a terminal condition, due to clinicians fear of placing an intolerable burden upon patients and families. 8 This study aimed to measure the needs of patients with advanced malignant disease using a validated multidimensional tool, and to investigate these needs in relation to demographic data and patients awareness of their diagnosis. Methods Design and Patients This study used a cross-sectional design, administering a validated measure to patients with advanced malignant disease. Patients were recruited from a community clinic and two hospitals in Havana City (including both inpatient and outpatient clinics). Inclusion criteria were advanced malignant disease, a physician s prognosis of six months or less, family permission, ability to participate and respond to questions, and written consent. Data Collection Tools and Procedure Patients chose whether to fill in the form themselves, or to have the researcher read out the questions and the patient give verbal answers. The original Palliative Outcome Scale (POS), 9 subsequently adapted and revalidated as the Argentinean POS, contains 12 items that address the clinical, psychosocial, spiritual, family, and service delivery elements considered relevant to patients with advanced disease. Ten items are scored 0 (no problem) to 4 (worst problem). Additionally, there is one open question about the worst symptoms experienced, and one question addressing whether the patient completed the questionnaire alone or with help. The Argentinean POS is currently the only palliative care-specific tool cross-culturally adapted and validated for use in the region. 10 An English translation of it can be found in the Appendix. In addition, demographic and clinical variables were collected (age, gender, ethnicity, tumor site, and place of care). The Eastern Cooperative Oncology Group (ECOG) Performance Status 11 is a single-item measure of physical performance. Scores range from 0 (normal activity) to 4 (unable to get out of bed). It was designed as a clinical measure in patients with cancer of the breast and lung, malignant melanoma, and lymphoma. The ECOG is said to be the most widely used performance measure in oncology. 12 Patients were asked What do you know about your condition? and their answer was used to establish whether they knew their diagnosis, coded as a binary variable. To establish whether they would like to know their diagnosis, patients were asked Would you wish to know if anything about your condition changed?, also coded yes or no. The researcher elicited also from conversation whether patients were aware that they were dying, and recorded the answer yes or no. Any health-related questions from the patient were referred back to the patient s clinical team, except for some issues regarding symptom control, which were openly managed with the researcher, the physician, and the patients. The clinical team also was asked whether the patient was being prescribed opioids. No new information was given to the patients regarding their prognosis during data collection or debriefing. Ethics The study was approved by the Tomás Romay Health Center Ethics Committee. Written

3 Vol. 37 No. 3 March 2009 Advanced Cancer Patients in Cuba 327 informed consent was obtained from all participants. Analysis All data were entered into an Excel spreadsheet and imported into SPSS 14.0 for analysis. Descriptive analysis was conducted for demographic and clinical data, and question 12 of the POS. For the first 10 items of the POS, mean score rank was compared by awareness of diagnosis using the Mann-Whitney test, with significance set at the 5% level. The sample size was large enough that the distribution of U approximates to Normal, and so z was used as the test statistic to derive P, the probability of the given value of U occurring if the reported experience in the two populations was identical. Results Ninety-one patients participated in the survey. No patient refused participation, but three families refused data collection on behalf of the patient. The median age was 59 years (min ¼ 17, max ¼ 84). The most common tumor sites were breast (18), lymphatic (15), lung (11), and prostate (10). Sixty-four had metastases. Four patients lived on their own. Most patients (n ¼ 67, 74%) completed the questionnaire with help from a member of the staff; 9 obtained help from a family member; and 15 completed the questionnaire alone (Table 1). Of the 91 patients, 37 (40.7%) were aware of their primary diagnosis, and 8 (8.8%) made statements indicative of a knowledge of poor prognosis. Two of these eight did not know their diagnosis. Fifty-four patients (59.3%) stated that they would like to know if their condition changed. Of these 54 patients, 22 (41%) did not know they had cancer, and 32 (59%) knew their diagnosis but wanted more information. Twenty patients (22.0%) were receiving opioids for pain relief. Twenty-five patients with scores of 3 and 4 for pain were not being treated with opioids. The results for the first 10 items of the POS show that the most burdensome problems (i.e., those most frequently scored 3 or 4) were wasted time on appointments (70.0%), pain (41.8%), patient anxiety (38.5%), and family anxiety (37.4%) (Table 2). The score distributions are clearly nonparametric in Table 1 Characteristics of Participants Variable n % Sex Female Ethnic group White Hispanic/Latino Black Place of care Home Outpatient Inpatient Functional status Fully active Symptomatic Less than half the time in bed More than half the time in bed Bedbound Age (years) Less than e e e and above Primary diagnosis Solid tumor Nonsolid tumor Total 91 most cases. The distribution for pain scores is mainly Normal with a dip in the center at 2; for symptoms, the distribution rises to a peak at 1. Personal and family worry both have the same shape, with peaks at 0 and 3. For information, support, finding life worthwhile, and self-worth, the majority of answers are 0. This skew is particularly pronounced for information and less developed for family support, which is more evenly distributed. Wasted time is the only distribution to be skewed to the right, with almost no one scoring 2. The shape for personal affairs is more of an even slope from the highest at 0 to the lowest at 4. There was no association between POS item scores and gender (Mann-Whitney tests), or age (scatter plot of mean POS score). Metastasis was significantly associated with a worse score for pain (U ¼ 546, P ¼ 0.005), other symptoms (U ¼ 460, P < 0.001), personal anxiety (U ¼ 539, P ¼ 0.004), and family anxiety (U ¼ 603, P ¼ 0.019) on a Mann-Whitney test. The scores for the 37 patients (41%) who were aware of their diagnosis were compared to those for the 54 (59%) who were not (Table 3). A

4 328 Justo Roll et al. Vol. 37 No. 3 March 2009 Table 2 POS Scores POS Score (%) Mean SD Pain (19.8) 21 (23.1) 14 (15.4) 21 (23.1) 17 (18.7) Other symptoms (18.7) 26 (28.6) 21 (23.1) 19 (20.9) 8 (8.8) Patient anxiety (25.3) 15 (16.5) 18 (19.8) 25 (27.5) 10 (11.0) Family anxiety (34.1) 12 (13.2) 14 (15.4) 21 (23.1) 13 (14.3) Information (58.2) 8 (8.8) 16 (17.6) 6 (6.6) 8 (8.8) Support (45.5) 15 (16.5) 14 (15.4) 12 (13.2) 9 (9.9) Life worthwhile (59.3) 18 (19.8) 7 (7.7) 6 (6.6) 6 (6.6) Self-worth (53.8) 10 (11.0) 23 (25.3) 2 (2.2) 7 (7.7) Wasted time (25.3) d 4 (4.4) d 64 (70.3) Personal affairs (54.4) d 34 (37.8) d 7 (7.8) higher mean rank corresponds to more problems. It is notable that those patients who were aware of their diagnosis had statistically significantly better scores with respect to symptoms, patient anxiety and information (all at 5% level), and support (to 1%). For all other items, there was no significant difference between the two groups. Discussion There have been no previous studies in Cuba investigating palliative care needs in the terminally ill. The study shows that the most burdensome problems recorded on the POS, measured from the proportion of patients scoring 3 or 4, were wasted time on appointments (70%), pain (42%), patient anxiety (39%), and family anxiety (37%). Patient anxiety was one of the variables to have a lower score associated with knowledge of diagnosis. Some pain was apparently not being effectively managed as 66% of the people with pain scores of 3 or 4 were not receiving strong opioids. Palliative care in Cuba, as in many countries, is at a very early stage. In Cuba and Latin America generally, there has long been a reported tendency to withhold information from patients. 13 Health care providers believe that giving patients bad news could cause intolerable distress. 7,8 Palliative care physicians in Latin America are more likely to value beneficence and justice over autonomy, compared to doctors in Canada and Europe. 13 In this survey, only 41% of terminally ill cancer patients appeared to be aware of their diagnosis and 59% said they would want to know if their condition changed. There was a discrepancy between the amount patients wished to know and the amount they were told. Reports of current practice in Havana and Cuba 14,15 have highlighted the need to increase awareness among patients about the diagnosis of a terminal disease. A recent survey conducted among chronic nonterminal patients in Cuba Table 3 Comparison of POS Scores According to Patient Knowledge of Diagnosis Not Aware of Diagnosis (n ¼ 54) Aware of Diagnosis (n ¼ 37) POS Variable Mean Score Mean Rank Mean Score Mean Rank Mann-Whitney U P Pain Other symptoms a Patient anxiety a Family anxiety Information a Support b Life worthwhile Self-worth Wasted time Personal affairs a Significant at 5% level. b Significant at 1% level.

5 Vol. 37 No. 3 March 2009 Advanced Cancer Patients in Cuba 329 also showed a high preference for diagnosis disclosure, with 78% of patients saying that if they had a terminal illness, they would like to be told the truth. 16 The patients who were not aware of their diagnosis were significantly more likely to have distressing symptoms, anxiety, perceived lack of information, and lack of support. Almost 60% of the sampled patients said that they would like to know more about their condition. Clear benefits and no harm are associated with informing patients of their diagnosis. Communication with patients is widely recognized as a fundamental tenet of palliative care. Withholding information on their diagnosis and prognosis from patients may put them at risk of isolation from their health care team and a number of inadequacies of care. In this study, mean and standard deviation were used to describe the POS results although they are nonparametric. This was because each question had only five possible answers, and in almost all cases, the median was 2 and the range was 5, so, therefore, the mean and standard deviation are more useful statistics to report. Knowledge of diagnosis was the reporting variable selected for this study but it was not an absolute indicator of a patient s understanding of their situation. Some patients were able to answer that they had terminal cancer, but nonetheless believed that they were getting better. They had been told the words of the diagnosis but not their meaning. The researcher (IJR) could not ask directly whether patients knew they were dying because of the strength of the taboo surrounding death and because of the ethical need to ensure participation in the study did not lead to communication of diagnosis or prognosis. The study has several other limitations. The inclusion criterion of less than six months to live is based on physician prognosis, which has been shown to be unreliable, with a tendency to overoptimism. 17 Physicians may not have put forward patients whom they believed would refuse or be unable to participate in the study, further biasing the sample. Those with the worst quality of life might be least able to participate. The use of different methods of data collection (self-completion vs. oral response) may have introduced bias. No previous studies in Cuba have attempted to measure patient awareness or its relationship to multidimensional problems in this setting. This survey constitutes one of the first attempts to study end-stage cancer patients and the relationship between patients awareness of diagnosis and end-of-life physical/ psychological symptoms. This study adds to knowledge about the needs of terminal cancer patients using a well-validated tool. Moreover, it demonstrates an association between patient knowledge and quality of life in a setting where this connection is generally not accepted. Further studies could explore methods of communication with patients, evaluated by patient quality of life. Acknowledgments The authors wish to acknowledge the support of Dr. Yee, Education Director at Enrique CabreraGeneralHospital,andDr.Gomez,of the Cuban National Institute of Cancer. They also thank the patients, clinicians, and families who participated in the study. The authors are also grateful to the International Association of Hospice and Palliative Care and to Help the Hospices for their financial support in initiating this education and research collaboration. References 1. Martin AA, Galan YH, Rodriguez AJ, et al. The Cuban National Cancer Registry: 1986e1990. Eur J Epidemiol 1998;14:287e Guanche Garcell H, Garcia Arzola E, Gonzalez Isla J, Salomon Zaldivar E, Perez Montero P. Cancer trends in hospital morbidity and lethality. An Med Interna 2007;24(1):12e Espinosa-Roca AA, Espinosa-Brito AD, Fernandez-Costeleiro E, Sabates-Llerandi T. Where patients with cancer die in Cuba. BMJ 2006; 332(7542): De Lima L. Advances in palliative care in Latin America and the Caribbean: ongoing projects of the Pan American Health Organization (PAHO). J Palliat Med 2001;4(2):228e Torres Vigil I, Aday LA, De Lima L, Cleeland CS. What predicts the quality of advanced cancer care in Latin America? A look at five countries: Argentina, Brazil, Cuba, Mexico and Peru. J Pain Symptom Manage 2007;34(3):315e Barnard D. International policy report: introduction. J Palliat Med 2001;4(2):227e228.

6 330 Justo Roll et al. Vol. 37 No. 3 March Bruera E. Palliative care in Latin America. J Pain Symptom Manage 1993;8(6):365e Mitchell J. Cross-cultural issues in the disclosure of cancer. Cancer Pract 1998;6(3):153e Hearn J, Higginson IJ. Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Qual Health Care 1999;8:219e Eisenchlas J, Harding R, Daud ML, et al. Use of the Palliative Outcome Scale in Argentina: a cross-- cultural adaptation and validation study. J Pain Symptom Manage 2008;35(2):188e Oken M, Creech R, Tormey D, et al. Toxicity and response criteria of the Eastern Cooperative Oncology Group. Am J Clin Oncol 1982;5:649e Bowling A. Measuring disease: A review of disease-specific quality of life measurement scales. Bury St. Edmonds: St. Edmondsbury Press Limited, Bruera E, Neumann CM, Mazzocato C, Stiefel F, Sala R. Attitudes and beliefs of palliative care physicians regarding communication with terminally ill patients. Palliat Med 2000;14:287e Guinart Zayas N. Cómo atender a la familia del enfermo terminal (How to give attention to the patient s family). Rev Cubana Med Gen Integr 2006; 22(1). 15. Perez Cardenas C. Atención integral a pacientes oncológicos en la Atención Primaria de Salud (Integrated cancer patient care in Primary Health Care). Rev Cubana Med Gen Integr 2001;17(3):263e Justo Roll I, Yee S. La decisión de conocer el diagnóstico de enfermedad terminal: estudio en 301 habitantes de La Habana Vieja (The decision to know the diagnosis of terminal illness: Study of 301 inhabitants of Old Havana). Med Paliat 2007;14(1):28e Vigano A, Dorgan M, Bruera E, Suarez- Almazor ME. The relative accuracy of the clinical estimation of the duration of life for patients with end of life cancer. Cancer 1999;86:170e176. Appendix English Translation of the Argentinean Version of the POS In the last seven days: 1. Have you been troubled by pain? (0 ¼ not at all, 4 ¼ yes, I could not think about anything else) 2. Have you been troubled by other symptoms? (0 ¼ not at all, 4 ¼ very much) 3. Have you been worried or anxious about your disease or treatment? (0 ¼ not at all, 4 ¼ I could not think of anything else; worry and anxiety absorbed me completely) 4. Has your family been worried about you? (0 ¼ not at all, 4 ¼ yes, they have been constantly worried about me) 5. How much information have you and your family been given? (0 ¼ everything we asked for and we always felt free to ask questions, 4 ¼ no information, even when we asked) 6. Have you been able to talk to your family and friends? (0 ¼ yes, as much as wanted, 4 ¼ no, I could not talk to anyone) 7. Have you found life worthwhile? (0 ¼ yes, always, 4 ¼ not at all) 8. Have you felt good about yourself? (0 ¼ yes, always, 4 ¼ not at all) 9. How much time have you lost on issues relating to your health? (0 ¼ no time, 4 ¼ more than half a day) 10. Have you been able to resolve personal problems? (0 ¼ resolved all my problems and all my affairs are as I wanted them, 4 ¼ there are problems I have not tried to resolve)