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Executive Summary
Pages 1-16

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From page 1...
... The nature of these lasting effects and their long-term implications for survivors and their families is the subject of this report. There are now 10 million Americans alive with a personal history of cancer, all of whom are considered cancer survivors.
From page 2...
... Quality cancer survivorship care involves the provision of four essential components of care within a delivery system that facilitates access to comprehensive and coordinated care (Box ES-1)
From page 3...
... The constellation of cancer's long-term and late effects varies by cancer type, treatment modality, and individual characteristics, but there are common patterns of symptoms and conditions that must be recognized so that health and wellbeing can be improved. Recommendation 1: Health care providers, patient advocates, and other stakeholders should work to raise awareness of the needs of cancer survivors, establish cancer survivorship as a distinct phase of cancer care, and act to ensure the delivery of appropriate survivorship care.
From page 4...
... Such a care plan would summarize critical information needed for the survivor's long-term care: · Cancer type, treatments received, and their potential consequences; · Specific information about the timing and content of recommended follow-up; · Recommendations regarding preventive practices and how to maintain health and well-being; · Information on legal protections regarding employment and access to health insurance; and · The availability of psychosocial services in the community. These content areas, adapted from those recommended by the President's Cancer Panel (2004)
From page 5...
... DEVELOPING CLINICAL PRACTICE GUIDELINES FOR SURVIVORSHIP CARE The Survivorship Care Plan would inform clinicians involved in the subsequent care of cancer survivors about treatment exposures and signs and symptoms of late effects, and, in some cases, would provide concrete steps to be taken. To carry out this plan, an organized set of clinical practice guidelines based on the best available evidence is needed to help ensure appropriate follow-up care.
From page 6...
... DEFINING QUALITY HEALTH CARE FOR CANCER SURVIVORS For certain types of cancer, some evidence-based measures of quality survivorship care exist. Survivors of breast cancer, for example, need to receive annual mammograms, survivors of prostate cancer need periodic testing with the prostate-specific antigen (PSA)
From page 7...
... Barriers facing cancer survivors and their providers in achieving quality survivorship care include (1) a fragmented and poorly coordinated cancer care system; (2)
From page 8...
... , other collaborating institutions, and the states in developing comprehensive cancer control plans that include consideration of survivorship care, and promoting the implementation, evaluation, and refinement of existing state cancer control plans. IMPROVING HEALTH CARE PROFESSIONAL CAPACITY Few oncology and primary care health professionals have formal education and training regarding cancer survivorship.
From page 9...
... , professional associations, and voluntary organizations should expand and coordi nate their efforts to provide educational opportunities to health care providers to equip them to address the health care and quality of life issues facing cancer survivors. Efforts are needed to update undergraduate and graduate curricula for those in training and to provide continuing education for practicing providers of survivorship care.
From page 10...
... · Public and private sponsors of services to support cancer survivors and their families should finance programs offering education, counseling, support, legal advice, vocational rehabilitation, and referral for survivors who want to work. · Providers who care for cancer survivors should become familiar with the employment rights that apply to survivors who want to work; make available information about employment rights and programs; and routinely ask patients who are cancer survivors if they have physical or mental health problems that are affecting their work · Employers should implement programs to assist cancer survivors, for example, through short- and long-term disability insurance, return-towork programs, accommodation of special needs, and employee assistance programs.
From page 11...
... Insurers and payors of health care should recognize survivorship care as an essential part of cancer care and design benefits, payment policies, and reimbursement mechanisms to facilitate cover age for evidence-based aspects of care. Cancer survivors need continuous access to health insurance that covers their health care needs.
From page 12...
... Policy makers could strengthen and build on this program, first by ensuring that more eligible women with breast and cervical cancer are reached by it, and second by expanding Medicaid eligibility to include other cancer patients and survivors who have no other coverage options. All health insurance in the United States, including Medicare, Medicaid, employer-sponsored group health plans, and individually purchased policies, should cover effective cancer survivorship care.
From page 13...
... , and private health insurers and plans should increase their support of survivorship re search and expand mechanisms for its conduct. New research initia tives focused on cancer patient follow-up are urgently needed to guide effective survivorship care.
From page 14...
... For example: · More long-term follow-up studies should be conducted of individuals enrolled in clinical trials through the NCI-sponsored Cooperative Groups; · Additional survivorship special studies should be conducted through population-based cancer registries; · National household and health care surveys should be analyzed to capture information on survivorship; · Opportunities should be sought to link data from cancer registries to administrative databases; · The follow-up period of ongoing cancer health services research studies should be extended to yield more information on long-term survivorship; and · Investigators should be encouraged to use existing primary care and health services research networks to conduct cancer survivorship research. In addition to harnessing these existing mechanisms, the committee recommends that federal (e.g., CMS, AHRQ, NCI)
From page 15...
... 2003. Childhood Cancer Survivorship: Improving Care and Quality of Life.


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