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With the risk of more than one in three getting cancer during a lifetime, each of us is likely to experience cancer, or know someone who has survived cancer. Although some cancer survivors recover with a renewed sense of life and purpose, what has often been ignored is the toll taken by cancer and its treatment—on health, functioning, sense of security, and well-being. Long lasting effects of treatment may be apparent shortly after its completion or arise years later. The transition from active treatment to post-treatment care is critical to long-term health. From Cancer Patient to Cancer Survivor focuses on survivors of adult cancer during the phase of care that follows primary treatment. The book raises awareness of the medical, functional, and psychosocial consequences of cancer and its treatment. It defines quality health care for cancer survivors and identifies strategies to achieve it. The book also recommends improvements in the quality of life of cancer survivors through policies that ensure their access to psychosocial services, fair employment practices, and health insurance. This book will be of particular interest to cancer patients and their advocates, health care providers and their leadership, health insurers, employers, research sponsors, and the public and their elected representatives.

In this report The Breast Cancer Research Foundation (BCRF) and the Institute of Medicine (IOM) present a one-day symposium that was held at the IOM to further disseminate the conclusions and recommendations of the joint IOM and National Research Council report, Saving Women's Lives: Strategies for Improving Breast Cancer Detection and Diagnosis. The committee assembled for this event was asked to share insights and consider ways in which the objectives of the report could be achieved from the standpoint of what women need to know, the best models of screening programs, manpower, risk stratification, basic research, and payment. This symposium seeks to provide continuing food for thought and ideas for actions in support of breast cancer detection and diagnosis and saving women's lives.

The outlook for women with breast cancer has improved in recent years. Due to the combination of improved treatments and the benefits of mammography screening, breast cancer mortality has decreased steadily since 1989. Yet breast cancer remains a major problem, second only to lung cancer as a leading cause of death from cancer for women. To date, no means to prevent breast cancer has been discovered and experience has shown that treatments are most effective when a cancer is detected early, before it has spread to other tissues. These two facts suggest that the most effective way to continue reducing the death toll from breast cancer is improved early detection and diagnosis. Building on the 2001 report Mammography and Beyond, this new book not only examines ways to improve implementation and use of new and current breast cancer detection technologies but also evaluates the need to develop tools that identify women who would benefit most from early detection screening. Saving Women's Lives: Strategies for Improving Breast Cancer Detection and Diagnosis encourages more research that integrates the development, validation, and analysis of the types of technologies in clinical practice that promote improved risk identification techniques. In this way, methods and technologies that improve detection and diagnosis can be more effectively developed and implemented.

The successes that have been achieved in treating childhood cancers stand as beacons against the less dramatic improvements for adults with cancer. Progress began to accelerate in the 1960s and 1970s, as treatment regimens were built up, primarily by building combinations of chemotherapeutic drugs. However the near absence of research in pediatric cancer drug discovery threatens to halt the progress in childhood cancer treatment achieved during the past four decades. Making Better Drugs for Children with Cancer identifies the major issues to be addressed in developing new agents for childhood cancers, the gaps in research and development, and the steps that have been suggested to move the process forward. This report also makes a new proposal to capitalize on today's science to bring new treatments to children's cancers.

Mammography is an important tool for detecting breast cancer at an early stage. When coupled with appropriate treatment, early detection can reduce breast cancer mortality. At the request of Congress, the Food and Drug Administration (FDA) commissioned a study to examine the current practice of mammography and breast cancer detection, with a focus on the FDA's oversight via the Mammography Quality Standards Act (MQSA), to identify areas in need of improvement. Enacted in 1993, MQSA provides a general framework for ensuring national quality standards in facilities performing screening mammography, requires that each mammography facility be accredited and certified, and mandates that facilities will undergo annual inspections. This book recommends strategies for achieving continued progress in assuring mammography quality, including changes to MQSA regulation, as well as approaches that do not fall within the purview of MQSA. Specifically, this book provides recommendations aimed at improving mammography interpretation; revising MQSA regulations, inspections, and enforcement; ensuring an adequate workforce for breast cancer screening and diagnosis; and improving breast imaging quality beyond mammography.

Shortly after 1998, leading members of Georgia's government, medical community, and public-spirited citizenry began considering ways in which some of Georgia's almost $5 billion, 25-year settlement from the tobacco industry's Master Settlement Agreement with the 50 states could be used to benefit Georgia residents. Given tobacco's role in causing cancer, they decided to create an entity and program with the mission of making Georgia a national leader in cancer prevention, treatment, and research. This new entity—called the Georgia Cancer Coalition, Inc. (GCC)—and the state of Georgia subsequently began implementing a far-reaching state cancer initiative that includes five strategic goals: (1) preventing cancer and detecting existing cancers earlier; (2) improving access to quality care for all state residents with cancer; (3) saving more lives in the future; (4) training future cancer researchers and caregivers; and (5) turning the eradication of cancer into economic growth for Georgia. Assessing the Quality of Cancer Care identifies a set of measures that could be used to gauge Georgia's progress in improving the quality of its cancer services and in reducing cancer-related morbidity and mortality.

The National Cancer Policy Board and the Board on Science, Engineering, and Economic Policy convened a workshop in January 2004 on'Economic Models of Colorectal Cancer (CRC) Screening in Average-Risk Adults'. The purpose of the workshop was to explore the reasons for differences among leading cost-effectiveness analysis (CEA) models of CRC screening, which public health policy makers increasingly rely on to help them sift through the many choices confronting them. Participants discussed the results of a collaborative pre-workshop exercise undertaken by five research teams that have developed and maintained comprehensive models of CRC screening in average-risk adults, to gain insight into each model's structure and assumptions and possible explanations for differences in their published analyses. Workshop participants also examined the current state of knowledge on key inputs to the models with a view toward identifying areas where further research may be warranted. This document summarized the presentations and discussion at the workshop.

This report is the summary of a symposium presented by the American Cancer Society (ACS) and the Institute of Medicine (IOM) to further disseminate the conclusions and recommendations of Fulfilling the Potential of Cancer Prevention and Early Detection. This report discusses issues including better support for tobacco and obesity campaigns; coordination of programs; joint approaches with the food industry; the need for an explicit consensus national tobacco and obesity strategy; viewpoints of payers; changing Medicare's approach to prevention; private sector payment programs; improvements in applied research and dissemination of results; better science in programs; problems in modifying medical practice; and conflict between individual choice and policy options.

In Meeting Psychosocial Needs of Women with Breast Cancer, the National Cancer Policy Board of the Institute of Medicine examines the psychosocial consequences of the cancer experience. The book focuses specifically on breast cancer in women because this group has the largest survivor population (over 2 million) and this disease is the most extensively studied cancer from the standpoint of psychosocial effects. The book characterizes the psychosocial consequences of a diagnosis of breast cancer, describes psychosocial services and how they are delivered, and evaluates their effectiveness. It assesses the status of professional education and training and applied clinical and health services research and proposes policies to improve the quality of care and quality of life for women with breast cancer and their families. Because cancer of the breast is likely a good model for cancer at other sites, recommendations for this cancer should be applicable to the psychosocial care provided generally to individuals with cancer. For breast cancer, and indeed probably for any cancer, the report finds that psychosocial services can provide significant benefits in quality of life and success in coping with serious and life-threatening disease for patients and their families.

Cancer ranks second only to heart disease as a leading cause of death in the United States, making it a tremendous burden in years of life lost, patient suffering, and economic costs. Fulfilling the Potential for Cancer Prevention and Early Detection reviews the proof that we can dramatically reduce cancer rates. The National Cancer Policy Board, part of the Institute of Medicine, outlines a national strategy to realize the promise of cancer prevention and early detection, including specific and wide-ranging recommendations. Offering a wealth of information and directly addressing major controversies, the book includes: A detailed look at how significantly cancer could be reduced through lifestyle changes, evaluating approaches used to alter eating, smoking, and exercise habits. An analysis of the intuitive notion that screening for cancer leads to improved health outcomes, including a discussion of screening methods, potential risks, and current recommendations. An examination of cancer prevention and control opportunities in primary health care delivery settings, including a review of interventions aimed at improving provider performance. Reviews of professional education and training programs, research trends and opportunities, and federal programs that support cancer prevention and early detection. This in-depth volume will be of interest to policy analysts, cancer and public health specialists, health care administrators and providers, researchers, insurers, medical journalists, and patient advocates.

Only more recently has it been realized that the intense effort to care for and cure a child with cancer does not end with survival. Continued surveillance and a variety of interventions may, in many cases, be needed to identify and care for consequences of treatment that can appear early or only after several decades and impair survivors'health and quality of life. The more than two-thirds of childhood cancer survivors who experience late effects—that is, complications, disabilities, or adverse outcomes—as a result of their disease, its treatment, or both, are the focus of this report which outlines a comprehensive policy agenda that links improved health care delivery and follow-up, investments in education and training for health care providers, and expanded research to improve the long-term outlook for this growing population now exceeding 270,000 Americans.

The nature of biomedical research has been evolving in recent years. Technological advances that make it easier to study the vast complexity of biological systems have led to the initiation of projects with a larger scale and scope. In many cases, these large-scale analyses may be the most efficient and effective way to extract functional information from complex biological systems.Large-Scale Biomedical Science: Exploring Strategies for Researchlooks at the role of these new large-scale projects in the biomedical sciences. Though written by the National Academies'Cancer Policy Board, this book addresses implications of large-scale science extending far beyond cancer research. It also identifies obstacles to the implementation of these projects, and makes recommendations to improve the process. The ultimate goal of biomedical research is to advance knowledge and provide useful innovations to society. Determining the best and most efficient method for accomplishing that goal, however, is a continuing and evolving challenge. The recommendations presented in Large-Scale Biomedical Scienceare intended to facilitate a more open, inclusive, and accountable approach to large-scale biomedical research, which in turn will maximize progress in understanding and controlling human disease.

As a society, we have made amazing gains in being able to detect and treat cancer. Even so, about half the people who are told by their doctors that they have cancer will die within a few years. This means that every year about one million people find out that they have cancer and are treated, and about one-half million people die of cancer nationwide. So far, most cancer research and treatment has focused on trying to cure cancer. There hasn't been much attention paid to other important issues, such as pain control and taking care of other troubling symptoms. Now more and more people are aware that there are cancer care needs beyond just trying to cure it. Attention is now being paid to helping people with cancer cope better with the problems that may arise when people are being treated or as they approach death.

This booklet summarizes the findings and recommendations of Improving Palliative Care for Cancer (2001), for the lay Spanish-speaking reader. It describes the types of palliative care and comfort care that should be there for people dying from cancer, and the reasons why, too often, people suffer needlessly without it. The concrete steps that could be taken by society and individuals to improve access to palliative care are also laid out, in the recommendations.

National expenditures for medical care in the months and days preceding death are enormous. But we do not know whether that money is buying good quality care or optimizing the quality of life of those dying, or whether the situation is getting better or worse over time. The information that exists'describing death'at a national level — though some of it is very informative — is fragmentary. This report recommends ways to fill the information gaps by better use of existing nationally-representative data, and through some new measures, in particular, a new, ongoing National Mortality Followback Survey. The aim is to allow us to benchmark where we are today as a society, and what goals we can set to minimize pain and suffering and maximize the quality of life of all of us who will die in the years to come.

Each year more than 180,000 new cases of breast cancer are diagnosed in women in the U.S. If cancer is detected when small and local, treatment options are less dangerous, intrusive, and costly-and more likely to lead to a cure. Yet those simple facts belie the complexity of developing and disseminating acceptable techniques for breast cancer diagnosis. Even the most exciting new technologies remain clouded with uncertainty. Mammography and Beyond provides a comprehensive and up-to-date perspective on the state of breast cancer screening and diagnosis and recommends steps for developing the most reliable breast cancer detection methods possible. This book reviews the dramatic expansion of breast cancer awareness and screening, examining the capabilities and limitations of current and emerging technologies for breast cancer detection and their effectiveness at actually reducing deaths. The committee discusses issues including national policy toward breast cancer detection, roles of public and private agencies, problems in determining the success of a technique, availability of detection methods to specific populations of women, women's experience during the detection process, cost-benefit analyses, and more. Examining current practices and specifying research and other needs, Mammography and Beyond will be an indispensable resource to policy makers, public health officials, medical practitioners, researchers, women's health advocates, and concerned women and their families.

Interpreting the Volume-Outcome Relationship in the Context of Cancer Care is a summary of a workshop held on May 11, 2000, which brought together experts to review evidence of the relationship between volume of services and health-related outcomes for cancer and other conditions, discuss methodological issues related to the interpretation of the association between volume and outcome, assess the applicability of volume as an indicator of quality of care; and identify research needed to better understand the volume—outcome relationship and its application to quality improvement.

In our society's aggressive pursuit of cures for cancer, we have neglected symptom control and comfort care. Less than one percent of the National Cancer Institute's budget is spent on any aspect of palliative care research or education, despite the half million people who die of cancer each year and the larger number living with cancer and its symptoms. Improving Palliative Care for Cancer examines the barriers—scientific, policy, and social—that keep those in need from getting good palliative care. It goes on to recommend public- and private-sector actions that would lead to the development of more effective palliative interventions; better information about currently used interventions; and greater knowledge about, and access to, palliative care for all those with cancer who would benefit from it.

It is innately human to comfort and provide care to those suffering from cancer, particularly those close to death. Yet what seems self-evident at an individual, personal level has, by and large, not guided policy at the level of institutions in this country. There is no argument that palliative care should be integrated into cancer care from diagnosis to death. But significant barriers-attitudinal, behavioral, economic, educational, and legal-still limit access to care for a large proportion of those dying from cancer, and in spite of tremendous scientific opportunities for medical progress against all the major symptoms associated with cancer and cancer death, public research institutions have not responded. In accepting a single-minded focus on research toward cure, we have inadvertently devalued the critical need to care for and support patients with advanced disease, and their families. This report builds on and takes forward an agenda set out by the 1997 IOM report Approaching Death: Improving Care at the End of Life, which came at a time when leaders in palliative care and related fields had already begun to air issues surrounding care of the dying. That report identified significant gaps in knowledge about care at the end of life and the need for serious attention from biomedical, social science, and health services researchers. Most importantly, it recognized that the impediments to good care could be identified and potentially remedied. The report itself catalyzed further public involvement in specific initiatives-mostly pilot and demonstration projects and programs funded by the nonprofit foundation community, which are now coming to fruition.

X-ray mammography screening is the current mainstay for early breast cancer detection. It has been proven to detect breast cancer at an earlier stage and to reduce the number of women dying from the disease. However, it has a number of limitations. These current limitations in early breast cancer detection technology are driving a surge of new technological developments, from modifications of x-ray mammography such as computer programs that can indicate suspicious areas, to newer methods of detection such as magnetic resonance imaging (MRI) or biochemical tests on breast fluids. To explore the merits and drawbacks of these new breast cancer detection techniques, the Institute of Medicine of the National Academy of Sciences convened a committee of experts. During its year of operation, the committee examined the peer-reviewed literature, consulted with other experts in the field, and held two public workshops. In addition to identifying promising new technologies for early detection, the committee explored potential barriers that might prevent the development of new detection methods and their common usage. Such barriers could include lack of funding from agencies that support research and lack of investment in the commercial sector; complicated, inconsistent, or unpredictable federal regulations; inadequate insurance reimbursement; and limited access to or unacceptability of breast cancer detection technology for women and their doctors. Based on the findings of their study, the committee prepared a report entitled Mammography and Beyond: Developing Technology for Early Detection of Breast Cancer, which was published in the spring of 2001. This is a non-technical summary of that report.

One of the barriers to improving the quality of cancer care in the United States is the inadequacy of data systems. Out-of-date or incomplete information about the performance of doctors, hospitals, health plans, and public agencies makes it hard to gauge the quality of care. Augmenting today's data systems could start to fill the gap. This report examines the strengths and weaknesses of current systems and makes recommendations for enhancing data systems to improve the quality of cancer care. The board's recommendations fall into three key areas: Enhance key elements of the data system infrastructure (i.e., quality-of-care measures, cancer registries and databases, data collection technologies, and analytic capacity). Expand support for analyses of quality of cancer care using existing data systems. Monitor the effectiveness of data systems to promote quality improvement within health systems.

'This study was supported through funding provided by...the Centers for Disease Control and Prevention; the American Cancer Society; Amgen, Inc.; Abbott Laboratories and Hoechst Marion Roussel, Inc.

In November 1999, the Institute of Medicine, in consultation with the Commission on Life Sciences, the Commission on Physical Sciences, Mathematics, and Applications, and the Board on Science, Technology and Economic Policy launched a one year study on technologies for early detection of breast cancer. The committee was asked to examine technologies under development for early breast cancer detection, and to scrutinize the process of medical technology development, adoption, and dissemination. The committee is gathering information on these topics for its report in a number of ways, including two public workshops that bring in outside expertise. The first workshop on'Developing Technologies for Early Breast Cancer Detection'was held in Washington DC in February 2000. The content of the presentations at the workshop is summarized here. A second workshop, which will focus on the process of technology development and adoption, will be held in Washington, DC on June 19-20. A formal report on these topics, including conclusions and recommendations, will be prepared by the committee upon completion of the one-year study.

We all want to believe that when people get cancer, they will receive medical care of the highest quality. Even as new scientific breakthroughs are announced, though, many cancer patients may be getting the wrong care, too little care, or too much care, in the form of unnecessary procedures. How close is American medicine to the ideal of quality cancer care for every person with cancer? Ensuring Quality Cancer Care provides a comprehensive picture of how cancer care is delivered in our nation, from early detection to end-of-life issues. The National Cancer Policy Board defines quality care and recommends how to monitor, measure, and extend quality care to all people with cancer. Approaches to accountability in health care are reviewed. What keeps people from getting care? The book explains how lack of medical coverage, social and economic status, patient beliefs, physician decision-making, and other factors can stand between the patient and the best possible care. The board explores how cancer care is shaped by the current focus on evidence-based medicine, the widespread adoption of managed care, where services are provided, and who provides care. Specific shortfalls in the care of breast and prostate cancer are identified. A status report on health services research is included. Ensuring Quality Cancer Care offers wide-ranging data and information in clear context. As the baby boomers approach the years when most cancer occurs, this timely volume will be of special interest to health policy makers, public and private healthcare purchasers, medical professionals, patient advocates, researchers, and people with cancer.

This report for the National Cancer Policy Board (NCPB) describes the procedures currently in place in the United States for approving and monitoring clinical trials of cancer treatments. Virtually all cancer clinical trials are funded by agencies of the federal government or the pharmaceutical industry, so the focus is on the requirements for each of these groups. The paper is intended as a jumping off point for the NCPB to consider some of the pressing policy issues surrounding clinical trials in cancer, though as yet, no specific follow-on projects have been initiated.