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Table of Contents PREFACE EXECUTIVE SUMMARY 1. INTRODUCTION Origins of the Study Framework of the Report 2. CANCER SURVIVORS Defining Cancer Survivors and Survivorship Characteristics of Cancer Survivors Site-Specific Epidemiology Summary 3. THE MEDICAL AND PSYCHOLOGICAL CONCERNS OF CANCER SURVIVORS AFTER TREATMENT Overview Site-Specific Review Lifestyle Following Cancer Treatment Findings and Recommendations Appendix 3A?Examples of End-of-Treatment Consultation Notes 4. DELIVERING CANCER SURVIVORSHIP CARE Optimal Cancer Survivorship Care Barriers to Optimal Cancer Survivorship Care Models for Delivering Survivorship Care The Infrastructure for Delivering Survivorship Care Findings and Recommendations Appendix 4A?Summary of Articles Describing Recent U.S. Surveillance Practice Patterns, by Cancer Site Appendix 4B?Information on Ambulatory Care Survey Data Appendix 4C?What Has Been Learned About Models of Survivorship Care in Other Countries? Appendix 4D?Challenges in the Delivery of Selected Survivorship Services 5. PROVIDERS OF SURVIVORSHIP CARE: THEIR SUPPLY AND EDUCATION AND TRAINING Supply of Survivorship Care Providers Status of Professional Education and Training Support for Survivorship Education and Training Programs Findings and Recommendations 6. EMPLOYMENT, INSURANCE, AND ECONOMIC ISSUES Employment Health Insurance Life Insurance Findings and Recommendations 7. RESEARCH Survivorship Research Mechanisms for Conducting Research Challenges of Survivorship Research Status of Survivorship Research Findings and Recommendations Glossary Index Boxes, Figures, And Tables Executive Summary Boxes 1 Essential Components of Survivorship Care Chapter 2 Boxes 2-1 Who Is a Cancer Survivor? 2-2 The Cancer Control Continuum 2-3 Instrumental Activities of Daily Living Items Figures 2-1 Estimated number of cancer survivors in the United States from 1971 to 2002 2-2 Five-year relative survival rates 2-3 Projected number of cancer cases for 2000 through 2050 2-4 Cancer prevalence by age, 2001 2-5 Distribution of cancer survivors in the U.S. by site, 2002 2-6 Distribution of male cancer survivors in the U.S. by site, 2002 2-7 Distribution of female cancer survivors in the U.S. by site, 2002 2-8 Estimated percentage of persons alive in the U.S. diagnosed with cancer by current age, 2002 2-9 Distribution of cancer survivors by year since diagnosis, 2002 2-10 Age-standardized incidence and death rates, by race and ethnicity, U.S., 1997 to 2001 2-11 Cancer survival among men, all sites combined, 1988?1994 2-12 Cancer survival among women, all sites combined, 1988?1994 2-13 Limitations in ADL/IADL in cancer survivors versus those with no history of cancer 2-14 Functional limitations in cancer survivors versus those with no history of cancer 2-15 Number and percentage of chronic conditions among cancer patients, by age group 2-16 Severity of comorbidity for all patients and each tumor site 2-17 Conditional 5-year relative survival rates, breast cancer, by stage (modified American Joint Committee on Cancer (AJCC) staging) 2-18 Conditional 5-year relative survival rates, colorectal cancer, by sex and stage (modified AJCC staging) 2-19 Conditional 5-year relative survival rates, Hodgkin?s disease, by sex and age (historical stage) 2-20 Trends in breast cancer incidence, mortality, and survival 2-21 Percentage distribution of stage at diagnosis of breast cancer, by race and ethnicity, 1996 to 2000 2-22 Age distribution of incident and prevalent cases of breast cancer 2-23 Prevalence of selected comorbidities among postmenopausal women with breast cancer, by age 2-24 Trends in prostate cancer incidence, mortality, and survival 2-25 Stage at prostate cancer diagnosis, by race and ethnicity, U.S., SEER 1996 to 2000 2-26 Age distribution of incident and prevalent cases of prostate cancer 2-27 Stage at colorectal cancer diagnosis, by race and ethnicity, U.S., SEER 1996 to 2000 2-28 Age distribution of incident and prevalent cases of colorectal cancer 2-29 Age distribution of incident and prevalent cases of Hodgkin?s disease Tables 2-1 Estimated Number of Cancer Survivors, Incident Cases, and Deaths as Well as Age-Adjusted Incidence and Mortality Rates, and 5-Year Relative Survival Rates, United States, 2002 2-2 Age-standardized Incidence and Death Rates for Breast Cancer (Female) by Race and Ethnicity, U.S., 1997 to 2001 2-3 Age-standardized Incidence and Death Rates for Prostate Cancer by Race and Ethnicity, U.S., 1997 to 2001 2-4 Age-standardized Incidence and Death Rates for Colorectal Cancer by Race and Ethnicity, U.S., 1997 to 2001 Chapter 3 Boxes 3-1 Defining Late- and Long-Term Effects of Cancer Treatment 3-2 Psychosocial Concerns of Cancer Survivors 3-3 Advances in Breast Cancer Treatment: Implications for Late Effects 3-4 Psychosocial Issues Related to Transition Points in Treatment 3-5 Case Study: Lymphedema 3-6 Case Study: Osteoporosis 3-7 Case Study: Aromatase Inhibitors? Late Effects 3-8 Case Study: Cardiovascular Late Effects 3-9 Case Study: Fatigue 3-10 Approaches to Localized Prostate Cancer Treatment: Implications for Late Effects 3-11 Approaches to Colorectal Cancer Treatment: Implications for Late Effects 3-12 Approaches to Hodgkin?s Disease Treatment: Implications for Late Effects 3-13 NCCN CPG: Follow-up After Completion of Treatment for Hodgkin?s Disease 3-14 Counseling to Prevent Tobacco Use: Clinical Considerations 3-15 Nutritional Guidelines for Cancer Survivors from the American Institute for Cancer Research 3-16 Survivorship Care Plan Figures 3-1 Quality of life: Conceptual model 3-2 Breast Cancer Survivors Compared to Healthy Controls 3-3 Estimated probability of amenorrhea among breast cancer survivors, by age at diagnosis and treatment modality 3-4 NCCN practice guideline on cancer-related fatigue Tables 3-1 Examples of Possible Late Effects of Radiation Therapy, Chemotherapy, and Hormonal Therapy Among Survivors of Adult Cancers 3-2 Examples of Possible Late Effects of Surgery Among Survivors of Adult Cancers 3-3 Possible Late Effects Among Breast Cancer Survivors 3-4 Breast Cancer Clinical Practice Guidelines 3-5 Examples of Breast Cancer CPG Recommendations on Follow-up Mammography 3-6 Examples of Breast Cancer CPG Recommendations on Menopausal Symptom Management 3-7 Possible Late Effects Among Prostate Cancer Survivors 3-8 Possible Late Effects Among Colorectal Cancer Survivors 3-9 Examples of Colorectal Cancer CPG Recommendations on Follow-up Colonoscopy 3-10 Colorectal Cancer Clinical Practice Guidelines 3-11 Possible Late Effects Among Survivors of Hodgkin?s Disease 3-12 Prevalence of Smoking by Self-Reported History of Cancer, By Age, United States, 1999-2000 Chapter 4 Boxes 4-1 Recommendation from the Institute of Medicine Committee on Health Care Quality in America 4-2 Potential Survivorship Quality of Care Measures 4-3 Selected Survivorship-Related Standards of the American College of Surgeons? Commission on Cancer 4-4 Guidelines for Rehabilitation and for Patient Advocacy and Survivorship: Association of Community Cancer Centers Standards for Cancer Programs 4-5 American Cancer Society Survivorship-Related Books 4-6 Examples of Information on Survivorship Available to Cancer Survivors and Their Families 4-7 A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies 4-8 Comprehensive Cancer Control and Survivorship in Maryland 4-9 Recommendation from Ensuring Quality Cancer Care Figures 4-1 Cancer care trajectory 4-2 Average number of months of phase of care in 1996 among patients diagnosed with colorectal cancer from 1975 to 1996, by years since diagnosis 4-3 NCI-Designated Cancer Centers 4-4 Status of CDC State Comprehensive Cancer Control Plans Tables 4-1 The Provision of Counseling During Adult Cancer-Related Ambulatory Care Visits, United States, 2001?2002 4-2 Distribution of Adult Ambulatory Cancer Care Visits, by Site of Visit, Physician Specialty, and Clinic Type, United States, 2001?2002 4-3 Proportion of Adult Cancer-Related Ambulatory Care Visits for Which Care Was Shared by Other Physicians, by Site of Care, United States, 2001?2002 4-4 Percentage of Adult Cancer-Related Ambulatory Care Visits During Which Patients Saw an RN, PA, or NP, by Site of Care, United States, 2001?2002 4-5 Adult Cancer Survivorship Clinics 4-6 Characteristics of Cancer-Related Hospital Discharges, United States, 2002 4-7 Patient?s Race/Ethnicity and Payment Source for Adult Cancer-Related Ambulatory Care Visits, by Site of Care, United States, 2001?2002 4-8 Survivorship Services in NCI-Designated Comprehensive Cancer Centers 4-9 Number (and Percentage) of Programs Approved by the American College of Surgeons? Commission on Cancer That Provide Support Services, 2004 4-10 Survivorship Services in Selected ACCC Cancer Centers 4-11 Selected National Community-Based Psychosocial Resources 4D-1 Physicians? Qualifications to Provide Genetic Counseling and Recommend Genetic Testing Chapter 5 Boxes 5-1 Essential Content of Survivorship Training for Health Care Providers 5-2 Cancer as a Chronic Disease: Curriculum for Survivorship, Required Objectives for Medical School Core Curriculum 5-3 Continuing Medical Education: Examples from Recent Professional Meetings 5-4 Selected Examples of Survivorship-Related PDQ Summaries on Supportive Care (Coping with Cancer) 5-5 Oncology Social Work: Scope of Practice 5-6 The American Psychosocial Oncology Society Online Education Program: Survivorship 5-7 Examples of National Institutes of Health Program Education Grants Related to Cancer Survivorship Tables 5-1 Estimates of the Supply of Selected Physicians Who Provide Survivorship Care 5-2 Estimates of the Supply of Selected Nonphysician Survivorship-Related Providers 5-3 Selected ACS Professional Education and Training Programs 5-4 Professional Education Programs Supported by the Lance Armstrong Foundation 5-5 Methods of Survivorship Continuing Education Chapter 6 Boxes 6-1 Examples of Cancer-Related Job Loss 6-2 The Americans With Disabilities Act (ADA) 6-3 Examples of Accommodations of Individuals with Cancer 6-4 Family and Medical Leave Act (FMLA) Benefits 6-5 Examples of State Initiatives on Leave Policies Benefiting Cancer Survivors 6-6 10 Tips for Employers 6-7 Examples of Programs Providing Legal Assistance to Cancer Survivors 6-8 Teleconferences Addressing Workplace Issues Sponsored by CancerCare 6-9 Principles to Guide the Extension of Coverage 6-10 Barriers Faced by the Uninsured in Obtaining Private Individual Insurance??The Three A?s? 6-11 Limitations of State High-Risk Pools 6-12 Limitations of Individual Market Protections Under the Health Insurance Portability and Accountability Act (HIPAA) Figures 6-1 Work limitations by age and self-reported history of cancer, 1998?2000 6-2 Number of SSI recipients eligible because of a cancer diagnosis, by age, December 2003 6-3 National U.S. Medicare expenditures in 1996 by cancer type and phase of care 6-4 Sources of payment for health services expenditures among people reporting cancer-related health effects, by age, 2001?2002 6-5 Average annual out-of-pocket expenditures among people reporting cancer-related health effects, by age, 2001?2002 Tables 6-1 Limitations Imposed by Cancer and its Treatment on Patients Currently Working 6-2 Resolution of Cancer-Related ADA Charges, FY 2000-2003 6-3 Percentage of Workers with Access to Disability Insurance Benefits, by Selected Characteristics, Private Industry, 2004 6-4 People Without Health Insurance Coverage by Age, United States, 2004 6-5 Health Insurance Status of Cancer Survivors Ages 25 to 64, by Selected Characteristics, 2000?2003 6-6 Annual Costs for Cancer Drugs Commonly Administered to Cancer Survivors 6-7 Percentage of Workers with Access to Life Insurance Benefits, by Selected Characteristics, Private Industry, 2003 6A-1 NHIS Sample Size and Response Rates, 2000-2003 Chapter 7 Boxes 7-1 Selected Recent Publications from Research Conducted Using the Childhood Cancer Survivor Study 7-2 Selected Recent Publications from Research Conducted Using the CaPSURE Database 7-3 Selected Survivorship Research Based on SEER-Medicare Data 7-4 HIPAA?s Privacy Rule 7-5 Examples of National Institutes of Health (NIH) Program Funding Opportunities Related to Cancer Survivorship 7-6 Active American Cancer Society Cancer Survivorship Grants (Adults) Figures 7-1 PubMed citations for adult cancer survivorship research, 1992?2004 7-2 PubMed citations for adult cancer treatment research, 1992?2004 7-3 NIH Cancer Survivorship Grant Support ($ millions), by Year 7-4 Number of Cancer Survivorship Grants Awarded by NIH, by Year Tables 7-1 Domains of Cancer Survivorship Research 7-2 Examples of Clinical Trials of Relevance to Survivors of Adult Cancers 7-3 Cancer Clinical Trials
Library of Congress Subject Headings for this publication:
Cancer -- Patients -- Rehabilitation -- United States.
Cancer -- Patients -- Services for -- United States.
Cancer -- Treatment -- United States.
Neoplasms -- psychology -- United States.
Neoplasms -- therapy -- United States.
Continuity of Patient Care -- United States.
Quality of Health Care -- United States.
Survival Rate -- United States.
Survivors -- United States.