From Cancer Patient To Cancer Survivor

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 treatmentâ€"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.

This report of the proceedings of a symposium held in conjunction with the release of the IOM report, From Cancer Patient to Cancer Survivor: Lost in Transition, represents an effort on the part of the American Society of Clinical Oncology (ASCO), the National Coalition for Cancer Survivorship (NCCS), and the Institute of Medicine (IOM) to further disseminate the findings and recommendations of the IOM report and to take the next step toward implementation of those recommendations. The symposium and this report serve as important vehicles to raise awareness, fill gaps that have existed in cancer patients' long-term care, and chart a course for quality care for cancer survivors and their families. More than 100 stakeholders in the cancer community, including survivors, advocates, healthcare providers, government officials, insurers and payers, and researchers participated in the symposium. This report culminates a series of work at the IOM focused on cancer survivorship. The idea to embark on a major study of cancer survivorship within the National Academies originated with the National Cancer Policy Board (NCPB). The NCPB was established in 1997 in the IOM and the National Research Council's Division of Earth and Life Studies at the request of the National Cancer Institute (NCI), the National Institutes of Health, and the President's Cancer Panel. The NCPB identified emerging policy issues in the nation's effort to combat cancer, and prepared reports that address those issues, including a series of reports on topics ranging from cancer prevention to end-of-life care.

This report of the proceedings of a symposium held in conjunction with the release of the IOM report, From Cancer Patient to Cancer Survivor: Lost in Transition, represents an effort on the part of the American Society of Clinical Oncology (ASCO), the National Coalition for Cancer Survivorship (NCCS), and the Institute of Medicine (IOM) to further disseminate the findings and recommendations of the IOM report and to take the next step toward implementation of those recommendations. The symposium and this report serve as important vehicles to raise awareness, fill gaps that have existed in cancer patients' long-term care, and chart a course for quality care for cancer survivors and their families. More than 100 stakeholders in the cancer community, including survivors, advocates, healthcare providers, government officials, insurers and payers, and researchers participated in the symposium. This report culminates a series of work at the IOM focused on cancer survivorship. The idea to embark on a major study of cancer survivorship within the National Academies originated with the National Cancer Policy Board (NCPB). The NCPB was established in 1997 in the IOM and the National Research Council's Division of Earth and Life Studies at the request of the National Cancer Institute (NCI), the National Institutes of Health, and the President's Cancer Panel. The NCPB identified emerging policy issues in the nation's effort to combat cancer, and prepared reports that address those issues, including a series of reports on topics ranging from cancer prevention to end-of-life care.

The 2006 Institute of Medicine (IOM) consensus study report From Cancer Patient to Cancer Survivor: Lost in Transition made recommendations to improve the quality of care that cancer survivors receive, in recognition that cancer survivors are at risk for significant physical, psychosocial, and financial repercussions from cancer and its treatment. Since then, efforts to recognize and address the unique needs of cancer survivors have increased, including an emphasis on improving the evidence base for cancer survivorship care and identifying best practices in the delivery of high-quality cancer survivorship care. To examine progress in cancer survivorship care since the Lost in Transition report, the National Cancer Policy Forum of the National Academies of Sciences, Engineering, and Medicine held a workshop in July 2017, in Washington, DC. Workshop participants highlighted potential opportunities to improve the planning, management, and delivery of cancer survivorship care. This publication summarizes the presentations and discussions from the workshop.

Cancer care today often provides state-of-the-science biomedical treatment, but fails to address the psychological and social (psychosocial) problems associated with the illness. This failure can compromise the effectiveness of health care and thereby adversely affect the health of cancer patients. Psychological and social problems created or exacerbated by cancer--including depression and other emotional problems; lack of information or skills needed to manage the illness; lack of transportation or other resources; and disruptions in work, school, and family life--cause additional suffering, weaken adherence to prescribed treatments, and threaten patients' return to health. Today, it is not possible to deliver high-quality cancer care without using existing approaches, tools, and resources to address patients' psychosocial health needs. All patients with cancer and their families should expect and receive cancer care that ensures the provision of appropriate psychosocial health services. Cancer Care for the Whole Patient recommends actions that oncology providers, health policy makers, educators, health insurers, health planners, researchers and research sponsors, and consumer advocates should undertake to ensure that this standard is met.

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.

One of the key recommendations of the joint IOM and NRC book, From Cancer Patient to Cancer Survivor: Lost in Transition, is that patients completing their primary treatment for cancer be given a summary of their treatment and a comprehensive plan for follow-up. This book answers practical questions about how this "Survivorship Care Plan," including what exactly it should contain, who will be responsible for creating and discussing it, implementation strategies, and anticipated barriers and challenges.

This timely revision of the authoritative handbook gives a wide range of providers practical insights and strategies for treating cancer survivors’ long-term physical and mental health issues. Details of new and emerging trends in research and practice enhance readers’ awareness of cancer survivor problems so they may better detect, monitor, intervene in, and if possible prevent disturbing conditions and potentially harmful outcomes. Of particular emphasis in this model of care are recognizing each patient’s uniqueness within the survivor population and being a co-pilot as survivors navigate their self-management. New or updated chapters cover major challenges to survivors’ quality of life and options for service delivery across key life domains, including: Adaptation and coping post-treatment. Problems of aging in survivorship, disparities and financial hardship. Well-being concerns including physical activity, weight loss, nutrition, and smoking cessation. Core functional areas such as work, sleep, relationships, and cognition. Large-scale symptoms including pain, distress, and fatigue. Models of care including primary care and comprehensive cancer center. International perspectives PLUS, insights about lessons learned and challenges ahead. With survivorship and its care becoming an ever more important part of the clinical landscape, the Second Edition of the Handbook of Cancer Survivorship is an essential reference for oncologists, rehabilitation professionals, public health, health promotion and disease prevention specialists, and epidemiologists.