Volume 107, Issue 4 p. 874-881
Communication
Free Access

The Birmingham International Workshop on Supportive, Palliative, and End-of-Life Care Research

Neil A. Hagen MD

Corresponding Author

Neil A. Hagen MD

Division of Palliative Medicine, University of Calgary, Calgary, Alberta, Canada

Fax: (403) 270-9652.

Division of Palliative Medicine, University of Calgary, 1331 29 Street NW, Calgary, Alberta T2N4N2, Canada===Search for more papers by this author
Julia Addington-Hall MD

Julia Addington-Hall MD

End of Life Care, School of Nursing and Midwifery, University of Southampton,Southampton, United Kingdom

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Michael Sharpe MD

Michael Sharpe MD

Psychological Medicine and Symptoms Research, School of Molecular and Clinical Medicine,University of Edinburgh, Edinburgh, United Kingdom

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Alison Richardson PhD, MSc, BN, RN, PG, Dip Ed, RNT

Alison Richardson PhD, MSc, BN, RN, PG, Dip Ed, RNT

Cancer and Palliative Care, Florence Nightingale School of Nursing and Midwifery,King's College, London, United Kingdom

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Charles S. Cleeland PhD

Charles S. Cleeland PhD

Department of Symptom Research, The University of Texas M. D. Anderson Cancer Center, Houston, Texas

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on Behalf of the Participants

on Behalf of the Participants

List of participants: Canada: Pierre Allard (Elizabeth Bruyere Research Institute, Ottawa, Ontario), Michele Aubin (Laval Hospital Family Medicine Centre, Sainte-Foy, Quebec), Erik Blache (Canadian Institutes of Health Research [CIHR], Toronto, Ontario), Philip Branton (McGill University, Montreal, Quebec), Judith Bray (CIHR Institute of Cancer Research, Toronto, Ontario), Richard Doll (British Columbia Cancer Agency, Vancouver, British Columbia), Michael Downing (Victoria Hospice Society, Victoria, British Columbia), Neil Hagen (University of Calgary, Calgary, Alberta), Daren Heyland (Kingston General Hospital, Kingston, Ontario), Priscilla Koop (University of Victoria, Victoria, British Columbia), Deborah Stienstra (University of Manitoba, Winnipeg, Manitoba), and Lynn Straatman (University of British Columbia, Victoria, British Columbia); United Kingdom: Julia Addington-Hall (University of Southampton, Southampton), Michael Bennett (University of Leeds, Leeds), Jane Cope (National Cancer Research Institute, London), Irene Higginson (King's College, London), Julie Howard (National Cancer Research Institute, London), Gek Kwan-Lim (Marie Curie Cancer Care, London), Mari Lloyd-Williams (University of Liverpool, Liverpool), Henry McQuay (Oxford University, Oxford), Alex Molassiotis (University of Manchester, Manchester), Sheila Payne (University of Sheffield, Sheffield), Amanda Ramirez (King's College, London), Alison Richardson (King's College, London), Michael Sharpe (University of Edinburgh, Edinburgh), Daniel Stark (University of Leeds, Leeds), Teresa Tate (Marie Curie Cancer Care, London), Chris Todd (University of Manchester, Manchester), and Galina Velikova (University of Leeds, Leeds); and the United States: Charles S. Cleeland (The University of Texas M. D. Anderson Cancer Center, Houston, TX), Christina Meyers (The University of Texas M. D. Anderson Cancer Center, Houston, TX), David Kissane (Memorial Sloan Kettering Cancer Center, New York, NY), Susan McMillan (The University of South Florida College of Nursing, Tampa, FL), Gayle Page (Johns Hopkins University, Baltimore, MD), Jeff Sloan (Mayo Clinic, Rochester, MN), Tom Smith (Virginia Commonwealth University, Richmond, VA), Karen Syrjala (Fred Hutchinson Cancer Center, Seattle, WA), Joan Teno (Brown University, Providence, RI), Xin Shelley Wang (The University of Texas M. D. Anderson Cancer Center, Houston, TX), and Ann O'Mara (National Cancer Institute, Bethesda, MD).

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First published: 10 August 2006
Citations: 21

Should there be more international collaboration in research into supportive, palliative, and end-of-life care? Early in 2005, administrators from the U.K.'s National Cancer Research Institute (NCRI), the Institute of Cancer Research (ICR) of the Canadian Institutes of Health Research (CIHR), and the U.S. National Cancer Institute (NCI) began to discuss the feasibility of supporting multinational efforts to strengthen research activities in supportive, palliative, and end-of-life care. Their objective was to catalyze high-quality research that would improve this component of care for patients with cancer or other chronic illnesses. To inform their discussions, they called together a group of investigators with like interests across the 3 countries to review the progress to date in strategic development of research in these areas and to make recommendations for further action. The International Symposium on Supportive, Palliative, and End of Life Care (the Symposium) was held October 5 and 6, 2005 in Birmingham, England.

Senior administrators and leaders from the sponsoring national cancer research funding organizations, along with 10 investigators from each of the 3 countries, were invited. Although the Symposium was funded by cancer organizations, it was recognized that nonmalignant diseases, such as chronic organ failure, are equally in need of improved support for research in supportive, palliative, and end-of-life care. The common thread woven throughout this research is the need to understand the causes of distress and potential interventions to improve distress for patients and families from the time of diagnosis through recovery (survivorship) or until death.

The organizers of the symposium addressed a number of challenges. Research questions in the areas of supportive, palliative, and end-of-life care usually are complex and require interdisciplinary approaches, yet the research community is relatively small and often is fragmented along professional or other lines. For these reasons, Canada and the U.K. have recently undertaken national strategic research initiatives to promote collaboration and networking and to help build infrastructure. Similar efforts, largely supported by private foundations, have been undertaken in the U.S. Because overall research capacity is limited, it was agreed that coordination at the international level could lead to faster progress by achieving agreement on common priorities, identifying opportunities for interdisciplinary collaboration, providing a forum for debate and exchange of ideas, and reducing in duplication of effort. In addition, it was hoped that strengthening collaborative links and common approaches would help investigators gain funding for individual projects in their own countries.

This report outlines the context, discussions, and recommendations of the Symposium. It highlights the potential benefits and challenges of international collaborative research activities in supportive, palliative, and end-of-life care within the broader health care research community.

Supportive, Palliative and End-of-Life Care Research in Each Country

A brief history of research and research funding from each of the 3 countries was presented along with thematic reports from both collaborative investigator groups and individual researchers.

The United Kingdom

The publication in September 2000 of “The Cancer Plan” (Department of Health) emphasized the vital importance of research and development to cancer service reform in the U.K., and highlighted the need for planning and coordination of the research effort.1 The birth of the NCRI in 2001 drew together major funders of research from government, charitable, and private sectors to provide strategic oversight of cancer research conducted in the U.K.

A formal analysis of cancer research spending in the U.K. by the NCRI indicated that only 4.3% of direct cancer research spending by NCRI partners was allocable to supportive and palliative cancer care.2 In response, a Strategic Planning Group was established to examine the past and present state of supportive and palliative cancer care research in the U.K. and to make recommendations on how to improve it.3 Through a process of bibliometric analysis, interrogation of research data bases, and exercises to seek the views of researchers themselves using a survey and oral evidence sessions, a series of shortcomings were identified. It was identified that many researchers were working in isolation or in very small groups; training and career development opportunities were lacking, as was infrastructure support. These factors, together with funding shortages, clinical challenges, and methodological challenges, served to limit both the quality and quantity of research. The group's main recommendations were to link researchers, to improve research infrastructure, and to increase capacity by training new researchers and supporting research careers. To address these recommendations, the NCRI elected to focus its funding efforts on supportive and palliative care research collaboratives, to bring a number of research groups together and incorporate lone and emerging researchers. After a competitive application process, funds were awarded in August 2005 to support 2 collaboratives in a 5-year program of work. The respective work programs of the 2 research collaboratives are focused on 1) the development, evaluation, and implementation of complex interventions in supportive and palliative care; and 2) innovative approaches to complex symptoms, planning for care of older adults at the end of life, and narratives of cancer and other life-limiting diseases.

The United States

The NCI began funding research in the relief of cancer pain in the late 1970s, with several requests for proposals for both descriptive studies and clinical trials. For the last 2 decades, the NCI and other institutes at the National Institutes of Health (NIH) have sponsored several workshops and state-of-the-science meetings directed at palliative care, symptom relief, and behavioral methods for reducing the distress associated with cancer and other diseases. In the early 1990s, the U.S. Agency for Health Care Policy and Research (now the Agency for Health Research and Quality) published a major, evidence-based guideline for the management of cancer pain. Several reports from the National Institute of Medicine have been directed at improving symptom management across the cancer trajectory.4, 5 The NIH recently sponsored 2 state-of-the-science meetings summarizing research needs in pain, fatigue, and depression over the course of cancer and at the end of life.6, 7 Common themes in those reports are the lack of a scientific infrastructure to deal with the complex problems caused by multiple symptoms; the wide variety of social stressors that patients face (such as family, work, and medical costs); and the need to stimulate interdisciplinary research, from understanding the biology of multiple symptoms to improving the delivery of optimal care and social support. These workshops and state-of-the-science meetings have resulted in additional calls for proposals for both research and research-training applications.

Despite the efforts described above, the overall federal research funding for research in symptom control and palliative care is very small. In 2001, it was estimated that <1% of the NCI grants program was directed at studies in this area,5 and there is little to suggest that this percentage has increased. Fortunately, research funded by the government has been complemented by significant efforts from private foundations. For example, The Project on Death in America, the Mayday Foundation, and others have funded the development of new investigators in this area.8 A major project on improving end-of-life care was undertaken by the Robert Wood Johnson Foundation (the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment [the SUPPORT study]); and, although the intervention tested was not found to be effective,9, 10 the study generated a large number of articles that have improved our understanding of end-of-life problems in the U.S.

Canada

Several national initiatives have served to focus attention on the need for improving research support and research capacity in supportive, palliative, and end-of-life care in Canada. In the late 1980s, the Canadian Cancer Society launched a national initiative to evaluate and characterize the needs of Canadians living with cancer.11 In 1994, the National Cancer Institute of Canada (NCIC) held a workshop on the diffusion of innovation to identify barriers to the control of cancer pain.12 Later that year, the NCIC funded the creation of a national network for sociobehavioral research (SCRN) with a strong emphasis on supportive care. In 1995, the Senate of Canada released a high-profile report entitled, “End-of-life care: the right of every Canadian,”13 with follow-up reports in 2000, “Are we there yet?”,14 and an evaluation of the limited progress to date 10 years after the call to action, “Still not there yet” in 2005.15 Behind the scenes, throughout the late 1990s a framework for a national strategy for cancer control was developed. Among other priority areas, it profiled the need for enhanced research capacity in supportive, palliative, and end-of-life care. Although it is far from reaching its full potential, today, the Canadian Strategy for Cancer Control16 is well on the way to becoming a catalyst for national public policy and program planning in cancer care delivery. The CIHR, including the Institute of Cancer Research, was created in 2000 and is the premier, government-funded national research organization in Canada. Over the next 3 years, an extensive Delphi process was used to identify cancer research priorities for the CIHR, and research in palliative care landed at the top of the list. In 2003 and 2004, 2 new Requests for Applications were widely subscribed to, resulting in funding for 10 theme-based, multicenter, emerging team grants and in several dozen pilot grants and career development awards. Those grants totaled $16.5 million in support over 5 years. Because of the strength of these applications, in 2005, the Cancer Institute established a permanent Palliative and End of Life grant panel. The current overall research capacity of the country is small, and it is expected to take several years for the newly established Palliative and End of Life panel and the other positive developments to foster the growth and development of a larger and more effective palliative, supportive, and end-of-life care research community.

DISCUSSION

Initial steps toward supporting substantial initiative in supportive, palliative. and end-of-life care research have been taken by national funding agencies in the 3 countries; however, the overall pool of investigators and the number of research efforts remain proportionately small. For this reason, the development of research collaborations to create expanded research capacity could be of great value. The establishment of intracountry research collaboratives by the funding agencies provides hope for an expansion of this research and for recruiting and training investigators who are new to this field. The scene is not set for considering greater intercountry collaboration.

The remainder of the Symposium focused on characterizing areas of greatest research need, the particular role that international collaboration may play, and the mechanisms that may be invoked to support this international collaboration. Although the 3 countries have common research priorities, each country also may have specific priorities of its own; the intention of the Symposium was not to impose a single common strategy but, rather, to identify areas where a concentrated approach may be of mutual benefit.

An emerging picture: greatest research needs

Through a series of organized discussions, the Symposium identified interest in several areas of work where there is urgent need. These included measuring symptoms and symptom clusters, study of the biologic bases of complex symptom clusters, enhancing research in symptom interventions, family and informal care-giving, the impact of poverty, societal beliefs and approaches to death and end-of-life care, measuring quality of life within different cultural milieus, performance of the health care system, understanding and responding to transitions in care objectives, the use of technology to enhance care, and knowledge transfer. To focus discussions toward needs and recommendations, 3 working groups were formed to discuss broad topic areas, including 1) patient-centered approaches to health care delivery, 2) measures and mechanisms for symptoms and quality of life, and 3) methods of extending better symptom control, supportive care, and palliative care through knowledge transfer. These working groups brought their recommendations back to the group as a whole, which identified top-priority items for potential funding and outlined action steps for the future. A fourth area of interest, treatment futility, emerged as an area of conceptual, rather than research, collaboration.

Patient-centered approaches to health care delivery

Three aspects of a patient-centered approach to supportive and palliative care delivery identified by Symposium participants were: the coordination of care, access to palliative care, and support for family/informal caregivers care. Coordination of care refers to a range of strategies. These include the provision of guidance for patients to enable them to navigate services successfully, the creation of interdisciplinary teams to provide those services, and the use of information technology to provide distance communication.

To assist the patient in navigating services, there has been interest in providing individuals to guide them. An assessment of the value of introducing service guides into oncology clinics and other settings will require research into whether they improve continuity of care and reduce difficulties at points of transition between different services, institutions, and organizations.

Provision of care through interdisciplinary teams offers potential benefits in providing integrated, enhanced care that makes the best use of each type of professional and volunteer. However, the implicit merits and challenges of interdisciplinary team care in different settings have yet to undergo rigorous evaluation.

The use of technology, such as computers, the Internet, web-based clinical care tools, and telephone (interactive voice response) methods, have promise for improving symptom monitoring and providing “distance” expertise in patient management, and several of these currently are being researched actively. More widespread use of these technologies in health care delivery would be in keeping with innovation and public policy to improve access for individuals with disabilities.17, 18 Before they are implemented widely, research is needed urgently to evaluate the advantages and disadvantages of such technology-based approaches, including whether telemedicine methods, such as the telephone and Internet, can be used safely and effectively to provide expert input to community-based care.

Investigators from all 3 countries have begun active research on these aspects of coordination of care. Both Canada and the U.S. are pursuing technology for providing treatment algorithms for patients in remote areas, and all 3 countries are investigating synchronous, online support and systematizing and interpreting patient reports. Do these methods improve existing methods of care delivery? Are the needs of palliative patients met more effectively if they remain within their own communities? Who are the special populations of patients most likely to fail standard approaches and, thus, who will need special attention? Do these methods allow patients and caregivers to be more active agents in care? How can knowledge transfer be accomplished in a way that is most acceptable to the responsible provider (generalist or even minimally medically trained individuals)? Because there was a high level of interest in this topic from all 3 countries, a workgroup in this area may be especially successful.

Access to palliative care entails meeting the needs of patients and their care providers and providing comfort and dignity throughout the illness trajectory, regardless of the patient's socioeconomic status. Health care programs must be able to ensure equitable access to care, coordination and continuity of care, and high quality of care from diagnosis to cure or to the end of life. Clear differences exist between countries in the funding of care for symptom control and palliative care. It could be argued that the U.K. and Canada have greater integration of palliative care throughout the course of disease, whereas the Medicare benefit in the U.S. forces more of a dichotomy between curative and palliative treatment. However, the possible differential effects of various systems of reimbursement on actual quality of care delivered have yet to be examined. Research to identify economic, geographic, and cultural disparities in access to palliative and end-of-life care was identified as an area of common interest along with quality of services delivery across care settings (in the community, in acute-care hospitals, in residential and ambulatory hospices, and in long-term care institutions). The need to ensure high-quality end-of-life care for patients who are dying from end-stage, chronic disease, such as heart failure, chronic obstructive pulmonary disease, kidney failure, and degenerative neurologic disease, was also noted.

Access to end-of-life care requires recognition on the part of clinicians, patients, and their families of a transition of the objectives of care; and, to facilitate this transition, there would need to be greater understanding of the role of advanced-care planning and the process of end-of-life decision making. Research into the effectiveness of interventions to improve health care practice in this field was of common interest to the group. Investigators also expressed the need to evaluate national, regional, and local variations in practice, such as in the areas of hydration, delirium management, opioid rotation, and psychosocial support, and the reasons for these variations.

Poverty shapes access to high-quality care for patients who are dying. Not only can poverty precipitate illness or impairment that can hasten death, it can affect end-of-life transitions. Links may exist between poverty, quality of end-of-life care, and perceptions of safety. Quantitative, comparative analyses of population data (including old age and race/ethnicity) around circumstances of death and qualitative data collection and analysis around experiences of poverty and end of life (including the use of narratives, ethnography, and other techniques) are needed. Homelessness (including marginal housing situations), as a subset of poverty, can affect access to supportive, palliative, and end-of-life care. Poverty tends to be hidden in Western countries. Work is needed in each of the 3 countries to better identify patients who are poor and to characterize the impact of poverty on end-of-life transitions.

The meeting focused mostly on the needs for research in the 3 relatively wealthy countries that called the group together. However, a research framework also would be of value—perhaps of even greater value—to resource-poor countries where cancer care is available to only limited, more affluent sectors of their population. There are several examples in which research using simple patient and health care provider questionnaires is undertaken with only modest cost. Such surveys can document the size and impact of poor pain and symptom control and can have potentially potent results in affecting health care policy and national priorities. This model—using needs assessments to influence public policy—has been undertaken successfully in the wealthier countries.

Support for family/informal caregivers was recognized as being important in all 3 countries. There is evidence that individuals with cancer would like to die at home, but fewer than 1 in 4 patients do so: Enabling individuals to spend more time at home and to die there when possible is a political objective in both the U.K. and Canada. This strategy not only would support patient preferences but also potentially may reduce demands on scarce in-patient resources. Although support by families is essential to enable patients to remain at home, there is growing evidence that this often is associated with adverse health and emotional consequences in those families. Further research is needed to understand which families are particularly at risk and how they can be supported better and to explore good alternatives to home care (including improving end-of-life care in acute hospitals) based on an in-depth understanding of what it is about being at home that matters to individuals.

Symptoms and quality of life

Symposium participants identified several broad areas in symptom control and quality of life that are in need of research: how to measure quality of life, how to measure specific symptoms within the context of a high burden of illness, how to measure patient satisfaction, how to improve knowledge transfer in symptom control and quality of life, how to develop and evaluate complex symptom-control interventions, and how to assure research activities that will measure the quality of clinical practice delivery. One difficulty that is experienced in all 3 countries is the lack of a body of solid clinical trials to evaluate current methods of symptom control and management of emotional distress. This was identified universally as a major shortcoming in the field, because only with the completion of such clinical trials would a robust, evidence-based approach to the management of symptoms and emotional distress be possible. Whereas pharmaceutical companies invest heavily in the registration and promotion of new, symptom-related products, trials of off-patent medications and existing medications used for symptom control, and trials of nonpharmacologic therapies, continue to be under funded.

Although methods of assessment of certain symptoms (pain and depression, for example) are relatively well established within the cancer population, cancer patients and long-term survivors often have other distressing symptoms, such as cachexia, sleep disturbance, fatigue, and cognitive impairment. Measurement of these other symptoms is evolving but often is delineated less clearly and requires further study.

International standards of pain assessment and criteria for clinically meaningful improvements in pain have been published. The Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (IMMPACT) Guidelines for assessing pain outcomes have promoted improved applicability of research results through the application of standard assessment and outcome benchmarks.19, 20 A similar approach to standardize assessment and meaningful outcomes for other common symptoms and symptom clusters would encourage international collaboration in symptom-control research. How best to measure patient satisfaction with symptom and palliative care is another area of needed research.

Furthermore, most patients with chronic or advanced illness have more than 1 concurrent symptom. Measuring any 1 of those symptoms may fall short of capturing the total symptom burden. This limited perspective may have negative consequences; for example, a particular treatment may relieve 1 symptom while contributing several more. Thus, measuring multiple symptoms simultaneously, both in practice and in research, is an area in need of additional investigation. Specific approaches are required to identify those symptoms most likely to cause distress to patients, including the development of coherent measurement methods that will allow comparison of symptom distress across clinical trials, epidemiologic studies, and clinical practices. Understanding symptom burden, including when and which symptoms are most likely to lead to overwhelming distress or whether clusters of symptoms can be used as treatment targets for research, may guide clinicians to recommend changing or stopping particular treatments.

It has been recognized recently that some symptoms are more likely to cluster than others and, thus, may share a common etiology (e.g., pain, fatigue, and depression). Interindividual variability also has been noted, with some patients demonstrating greater risk for severe and distressing symptoms. Gaining a better understanding of the underlying mechanisms of these differences is needed, because it may be possible to develop biomarkers for those patients most at risk. For example, interindividual variation may be related to the concept of “frailty,“ which brings greater risk for poor outcomes in particular patients or clinical scenarios.21 It is believed that the underlying mechanism of frailty is related to reduced functional reserves and correspondingly impaired compensatory mechanisms. It is possible that characterizing a patient as frail may inform treatment pathways, yet frailty as a domain is not identified or measured well by currently understood clinical parameters within the culture of supportive, palliative, and end-of-life care. However, frailty syndrome has been characterized in geriatric oncology,21 and lessons from this area of study may be applied to patients with a high burden of illness at the end of life. New advances in basic research, such as work on animal models of “sickness behavior,” and clinical studies of biomarkers of frailty in older individuals,22 support the potential for developing biologic models for studying multiple symptoms and frailty in supportive, palliative, and end-of-life care. Genetic and proteomic research may lead to more effective approaches to managing the scenario of multiple symptoms in frail individuals based on clearer delineation of mechanisms.

Treatment futility: when is enough, enough?

Another pressing issue is when to end treatment directed toward cure. Conceptual approaches to death have changed over the past several decades, and it is no longer generally taboo in Western countries to speak of death and dying. Despite this, transitions in the objective of care are difficult to implement successfully for both patients and providers. Would better palliative care throughout the trajectory of a life-threatening diagnosis reduce demand for ineffective cure-oriented treatment? Would improved tools for measurement of prognosis or frailty inform decision making around stopping treatment? How should the end of curative treatment be defined, or is such a definition even possible?

There was general agreement that symptom control and palliative care should take equal priority with curative treatment as soon as a diagnosis of life-threatening illness is established and should be integrated fully within the objectives of care at all stages of illness. However, there also was agreement that curative treatment often is continued beyond evidence-based survival benefit, sometimes to the detriment of the patient because of treatment side effects, diminished quality of life, greater family burden, and added financial stress. This is referred to sometimes as “futile treatment.” At the same time, at least some curative treatments may have the benefit of reducing the burden of symptoms and improving quality of life in the absence of a survival benefit. In many countries and for many individuals, there is uncertainty regarding when to end treatment directed toward cure. Further challenging the notion of effective transitions in active cancer treatment is the misperception that once palliative care starts, active treatment should stop. A much wiser approach is to assure integration of palliative care through out cancer treatment.

Other potentially problematic transitions, such as that from active treatment to maintenance or to remission, also warrant investigation as opportunities for improved care. Because an individual may move between these states several times in the course of a disease, how can recognition of these transitions be facilitated? How do needs and objectives differ in these transitions? For example, rather than establishing an ongoing maintenance plan, health care professionals often discharge patients from frequent follow-up when the disease remits and see them only when symptoms reach a crisis level. An alternative model would be to monitor through continuity of care by using symptoms as a heralding manifestation of early recurrence.

The group recognized that the topic of treatment futility is more within the domain of decision making than traditional clinical oncology research and noted that there is currently no forum for the discussion of the complex issues (medical, moral, economic, societal) that surround treatment futility. Such a forum may be sponsored by a foundation, because national, government-financed research-funding agencies may not see this area as residing primarily within their domain.

Knowledge transfer

Individual investigators from all countries were concerned about knowledge transfer,23, 24 or the dissemination of the best evidence-based supportive, palliative, and end-of-life care, to the broadest range of practitioners and policy makers and believed that rapid dissemination of research findings, both positive and negative, needed to be an active area of collaborative investigation. Many newer technology avenues of dissemination, including the Internet and other electronic resources, are available now, but their effectiveness mostly is untested. All of the findings of the research areas highlighted above, including standardization of assessment, support of caregivers, and coordination of care, need to be available at the point of care and during prioritization of health care resources.

Looking forward: summary

The Symposium concluded by recommending steps for supporting international collaborations aimed at developing these themes among the research communities in the 3 countries: 1) Identify funding for travel bursaries and for working group formation to address priority research areas. This funding stream would provide support different from that available through mechanisms already in place in the 3 countries, including funding for state-of-the-science theme meetings, exchange visits between potential collaborators, and seed money to fund proposal development.

2) Focus activities on specific priority areas: A) methods of developing and evaluating improved symptom control, including possible mechanism-based treatments; B) assessment of the scenario of multiple, concurrent symptoms, possibly through partnerships between competitive grant-funding agencies and the pharmaceutical industry; C) large-scale clinical trials to evaluate and standardize approaches to symptom control that would generate an evidence base for the practice of supportive, palliative, and end-of-life care; D) assessment of, and reasons for, variation in end-of-life care in different practice settings (for example, hydration practices, symptom management, advance care planning, and opioid rotation); E) investigation of the experience of family and informal caregivers and of effective interventions to support them; F) improving methods of evaluating quality of service delivery across care settings, including cross-country comparisons; G) validation of electronic media techniques for distant assessment and management of symptoms by health care providers; H) assessment of a model of chronic disease care for cancer to address survivorship issues; and I) exploration of the impact of poverty for individuals in end-of-life transitions.

3) Establish as a funding priority a model, based on the IMMPACT approach, of standardized assessment of multiple symptoms and definition of clinically meaningful improvement in outcomes of treatment of multiple symptoms. Standardized documentation of symptoms and their outcomes will support research in symptom control in different countries and cultural milieus.

In view of the current urgency and importance of addressing the increasing needs for care delivered over long distances, the growing cohort of long-term survivors of cancer and its treatment, and the importance of appropriate and high-quality end-of-life care, there is need to pool international resources and to focus expertise. We call on the collective resources of the agencies that sponsored this meeting, along with other agencies and foundations, to help address these urgent research needs in supportive, palliative, and end-of-life care.