Improving Palliative Care for Cancer (2001) / Chapter Skim
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8 Cross-Cutting Research Issues: A Research Agenda for Reducing Distress of Patients With Cancer
8 Cross-Cutting Research Issues: A Research Agenda for Reducing Distress of Patients With Cancer
Pages 233-276
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From page 233... ...
University of Texas M.D. Anderson Cancer Center INTRODUCTION This chapter reviews the current status of research on end-of-life issues, advanced cancer, and symptom control and explores linkages with research on the distress experienced by other cancer patients in treatment and by many cancer survivors.
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OVERVIEW OF RESEARCH RELATED TO END OF LIFE, PALLIATIVE CARE, AND SYMPTOM CONTROL The types of research that are needed to improve care and reduce distress at the end of life fall into three major categories: 1. descriptive and epidemiologic studies that define the specific needs of patients and caregivers, determine the prevalence and severity of the symptom-generated distress that they experience, and point the way to additional investigation of the causes and potential treatment of this distress: 2.
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Some of these special difficulties include · the subjective nature of many of the measurement and outcome variables, · the poor fit of current disease models of research for doing this type of health-related investigation, · the lack of an organizational structure for responding to this type of research demand, · the high level of interdisciplinary research that is required to do the work, and · the absence of a high-priority pathway for putting this type of research in place. Organization of This Review This review offers examples from two areas of research that are critical to the delivery of better end-of-life and symptom control care:
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funding using the NIH CRISP retrieval system, · review of currently active clinical trials using the Clinicaltrials.gov database, and · survey responses from researchers in the field. Epidemiology and Descriptive Research: Prevalence, Impact, and Management of Symptoms Patients with advanced cancer typically experience multiple symptoms related to cancer and cancer treatment.
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prospectively studied the prevalence and severity of these symptoms in 1,000 patients with advanced cancer. Pain, fatigue, and anorexia were consistently found to be among the 10 most prevalent symptoms at all 17 primary cancer sites studied.
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These symptoms may be due to physiological changes associated with prior treatments, delayed side effects of treatment, or long-term consequences of the disease. For example, survivors of bone marrow transplantation may report cognitive impairment, physical symptoms, or emotional distress many years after the transplant (Andrykowski et al., 1995; McQuellon et al., 1996; Prieto et al., 1996~.
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Only half of the physicians surveyed indicated that cancer pain control was good or very good in their practice setting. Seventy-five percent of the physicians indicated that the most important barrier to cancer pain management was inadequate pain assessment.
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Ferrell and colleagues (199la,1991b) conducted a qualitative study of 85 family caregivers of cancer patients to describe their perspective toward cancer pain and their role in its management.
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There was no evidence that the PSDA substantially increased documentation of advance directives, and it appears that documentation of advance directives is unlikely to be a substantial element in improving the care of seriously ill patients. Examples of Studies to Change Practice and Improve End-of-Life Care and Symptom Control The most ambitious research project to understand and improve care at the end of life was the well-publicized SUPPORT (1990~.
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As is true of many other medical education efforts, relatively passive continuing medical education programs dealing with these issues have had little effect on practice (Cleeland, 1993; Weissman and Dahl, 1995~. There have been a few studies examining the effectiveness of improving the practice of cancer pain management.
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Current projects were identified in areas related to end of life, palliative care, and symptom control by searching CRISP, the NIH engine for indexing currently funded research. Key words for the major areas of such research were combined with "cancer." Individual funding abstracts were inspected to see if they were research projects, defined as "matches." Excluded were training grants, fellowships without a specific research topic,
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Search Term Descriptive and Health Interventions and Basic + Cancer Hits (Matches) Services Research Clinical Trials Science Palliative 54 ( 7)
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It is estimated that a majority of cancer patients could have their pain controlled, at least until the last week or two of life. Current treatment of cancer pain is beginning to be codified into evidence-based and practice-based guidelines (practice based refers to guidelines that blend expert opinion and research evidence, where the evidence alone is not sufficient)
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Most agree that advances in treating neuropathic pain will depend on understanding what causes it. Visceral pain, originating from inflammation or damage to internal body structures, is the least understood of the major classes of pain that contribute to the cancer pain state.
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Despite the existence of guidelines, the treatment of cancer pain remains largely empirical. There is an urgent need to confirm collected anecdotal information on analgesics, adjuvant analgesics, and neuroablative procedures, in randomized clinical trials.
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total of 42 that relate to basic or clinical CURRENTLY FUNDED CLINICAL TRIALS 1. Combination Chemotherapy in Treating Pain in Patients with Hormone-Refractory Metastatic Prostate Cancer 2.
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Parenteral nutrition may be used to improve patients' nutritional status and enable them to receive complete doses of chemotherapy or radiation therapy. However, in prospective randomized clinical trials, parenteral nutrition has not had a significant effect either on a patient's survival or on symptoms and toxicities (Body, 1999~.
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. Review of Current Funding: CRISP Listings Searching the CRISP database of current federal funding using the terms cancer and cachexia produced 28 hits.
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and mild hydration may reduce delirium in some patients with advanced disease (Bruera et al., 19951. Stimulant therapy may reverse some of the cognitive impairment (problems with memory, attention, and reasoning)
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As discussed above, survivors of bone marrow transplantation may report cognitive impairment, physical symptoms, or emotional distress many years after the transplant (Andrykowski et al., 1995; McQuellon et al., 1996; Prieto et al., 1996~. Basic Research Needs pairment?
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clinical trials of anticancer treatments that include neuropsychological assessments as a required measure of treatment toxicity to determine which treatments may cause cognitive impairment. Review of Current Funding: CRISP Listings Searching the CRISP database of current federal funding using the terms cancer and delirium or cognitive impairment produced seven hits.
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Opioids are often used for patients with dyspnea, but there have been too few well-controlled clinical trials to determine the ideal drug, route, or regimen. Corticosteroids are also commonly used, but even less is known about the effectiveness of these drugs in relieving dyspnea.
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However, methy~phenidate has been shown in trials to improve opioid sedation used to manage cancer pain (Bruera et al., 1992a, 1992b) and, as already mentioned, has been shown to improve cognitive function in patients with central nervous system tumors (Meyers et al., 1998~.
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behavioral interventions. Review of Current Funding: CRISP Listings Searching the CRISP database of current federal funding using the terms cancer and fatigue produced 34 hits.
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CURRENTLY FUNDED CLINICAL TRIALS 1. Blood Transfusions With or Without Epoietin Alfa in Treating Patients with Myelodysplastic Syndrome 2.
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, one is an intervention study, and two are basic science studies. Searching the CRISP database of current federal funding using the terms cancer and bowel obstruction produced only one hit, and this hit is not related to basic or clinical research on bowel obstruction in cancer.
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The risk of patients developing psychological symptoms is increased with advanced disease, with certain cancer treatments, with uncontrolled physical symptoms (e.g., pain) or functional limitations, with inadequate social support, or with a past history of psychiatric disorder (Breitbart, 1995~.
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Clinical trials using both pharmacologic and nonpharmacologic treatments are also needed. Fluoxetine (Prozac)
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, six deal with trials of interventions, and none are basic science studies. CURRENTLY FUNDED CLINICAL TRIALS DEPRESSION There are no current trials for depression.
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have to be developed, and methods of qualitative research have to be strengthened. Few of the practices that we depend upon for the care of the dying and for the patient with advanced cancer have been subjected to the scrutiny of careful randomized clinical trials, impeding the provision of evidence-based practice recommendations.
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, primarily in the development and testing of cancerrelated drugs and vaccines. With the increasing acceptance of symptom prevention and control, as well as general quality-of-life outcomes as end points for approval of new drugs, there has been a proportional increase in industry investment in the development and clinical testing of drugs for symptom control.
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POTENTIAE SOEUTIONS Packaging may be important. As has been pointed out, end-of-life, palliative care, and symptom control issues are components of the whole enterprise of cancer care, and elements of research in these areas are critical to all cancer patients.
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From page 265... ...
and arthritis all of which might have implications for the management of cachexia, pain, fatigue, cognitive impairment and depression or the role of opioid receptors common to several symptoms. The research needed for progress in understanding and treating advanced disease and symptom control is multidisciplinary, and program project and multi-institutional funding would be ideal mecha.
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Another portion of the literature consists of a presentation of care principles with no support from clinical trials. There is a need for a larger body of well-trained researchers who have advanced disease and symptom issues as their focus of interest to conduct their own studies and to collaborate with clinicians interested in carrying out research POTENTIAL SOLUTIONS Both short-term and long-term solutions to the small supply of investigators are required.
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It could explore the potential utility of patient and family interchanges with researchers and provide data from patients' experiences with existing and new symptom-related therapies. Lack of Clinical Trials THE PROBLEM The clinical trial database that covers end-of-life care, palliative care, and symptom control is very small.
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From page 268... ...
SUPPORT provides ample evidence that large numbers of very ill patients can be enrolled in randomized trials. In addition to clinical trials, these collaborative groups are the ideal setting for studies of the prevalence, impact, and current treatment of distress in patients with advanced cancer, but such descriptive studies within the collaborative groups are currently discouraged by the NCI.
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A National Cancer Institute of Canada Workshop on Symptom Control and Supportive Care in Patients with Advanced Cancer: methodological and administrative issues. Journal of Pain and Symptom Management 1995;10:129-130.
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Strategies for improving cancer pain management. Journal of Pain and Symptom Management 1993;8:361-364.
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Part I: Impact of cancer pain on family caregivers. Oncol Nurs Forum 1991;18:1303-1309.
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Teaching cancer pain management: durability of educational effects of a role model program. Cancer 1996; 77:996-1 001.
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When is cancer pain mild moderate or severe? Grading pain severity by its interference with function.
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Update on the cancer pain role model education program. Journal of Pain and Symptom Management 1995; 10 :292-297.
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Anderson Cancer Center Houston, TX Debra Dudgeon, M.D. Director, Palliative Care Medicine Program Queen's University Kingston, Ontario Betty Ferrell, R.N., FAAN, Ph.D.
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Istituto Tumori Milano, Italy Donna Zhukovsky, M.D. Associate Professor, Symptom Control and Palliative Care University of Texas M.D.
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