Index

A

Ability to work, support for cancersurvivors with short-term and long-term limitations in, 10, 417

Academic Chronic Care Collaborative, 195

Access to health insurance, policy makers ensuring that all cancer survivors have, 11, 419–420

Accommodations of individuals with cancer, 376

Accreditation Council for Graduate Medical Education, 330–331

Active patient involvement, 290

Activities of Daily Living (ADLs), instrumental, 39

Acute myelogenous leukemia, 84

Acute survival, 28

Adenocarcinoma, 160

Adequacy barriers

faced by the uninsured in obtaining private individual insurance, 400

of individual market protections under HIPAA, 404

of state high-risk pools, 401

Adjuvant therapy, 77, 81, 90, 94, 477

Adult ambulatory cancer care visits, distribution of, 209

Adult cancer survivorship clinics, 214–215

Adult cancer survivorship grants, active American Cancer Society programs, 466

Advances in breast cancer treatment, implications for late effects, 78–79

Advocates. See Legal advocates;

Patient advocacy

Affordability barriers

faced by the uninsured in obtaining private individual insurance, 400

of individual market protections under HIPAA, 404

of state high-risk pools, 401

African-American men, 56

African-American women, 50, 80, 239, 366

African-Americans, 58

oversampling of, 421

underrepresented among cancer survivors, 36

Age, of cancer survivors, 32–34

Age distribution of incident and prevalent cases

of breast cancer, 52

of colorectal cancer, 60

of Hodgkin’s disease, 61

of prostate cancer, 57



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From Cancer Patient to Cancer Survivor: Lost in Transition Index A Ability to work, support for cancersurvivors with short-term and long-term limitations in, 10, 417 Academic Chronic Care Collaborative, 195 Access to health insurance, policy makers ensuring that all cancer survivors have, 11, 419–420 Accommodations of individuals with cancer, 376 Accreditation Council for Graduate Medical Education, 330–331 Active patient involvement, 290 Activities of Daily Living (ADLs), instrumental, 39 Acute myelogenous leukemia, 84 Acute survival, 28 Adenocarcinoma, 160 Adequacy barriers faced by the uninsured in obtaining private individual insurance, 400 of individual market protections under HIPAA, 404 of state high-risk pools, 401 Adjuvant therapy, 77, 81, 90, 94, 477 Adult ambulatory cancer care visits, distribution of, 209 Adult cancer survivorship clinics, 214–215 Adult cancer survivorship grants, active American Cancer Society programs, 466 Advances in breast cancer treatment, implications for late effects, 78–79 Advocates. See Legal advocates; Patient advocacy Affordability barriers faced by the uninsured in obtaining private individual insurance, 400 of individual market protections under HIPAA, 404 of state high-risk pools, 401 African-American men, 56 African-American women, 50, 80, 239, 366 African-Americans, 58 oversampling of, 421 underrepresented among cancer survivors, 36 Age, of cancer survivors, 32–34 Age distribution of incident and prevalent cases of breast cancer, 52 of colorectal cancer, 60 of Hodgkin’s disease, 61 of prostate cancer, 57

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From Cancer Patient to Cancer Survivor: Lost in Transition Age-standardized incidence and death rates for breast cancer (female) by race and ethnicity, 51 for colorectal cancer by race and ethnicity, 58 for prostate cancer by race and ethnicity, 55 by race and ethnicity, 37 Agency for Healthcare Research and Quality (AHRQ), 5, 14, 103n, 145, 155, 354, 423, 463–464 increasing support of survivorship research and expanding mechanisms for its conduct, 13, 467–468 supporting demonstration programs to test models of survivorship care, 7, 251 Alaskan Natives, 56, 58 Alopecia, 162 Ambulatory care, 199, 288–289, 477 Ambulatory care survey data, 288–289 NAMCS, 288 NHAMCS, 288–289 Amenorrhea, 157, 477 estimated probability among breast cancer survivors, 91 American Academy of Dermatology, 278 American Academy of Family Physicians (AAFP), 333 American Association for Cancer Education (AACE), 332, 353–354 American Association of Medical Colleges (AAMC), 328 Institute for Improving Clinical Care, 195 American Board of Genetic Counseling (ABGC), 296, 348n American Board of Internal Medicine, 330 American Board of Medical Specialties (ABMS), 322, 354 American Cancer Society (ACS), 14, 146–147, 196, 231, 350, 384, 465–466 Behavioral Research Center, 465 Cancer Source Book for Nurses, 339 “Cancer Survivors Network,” 232, 305 Guide to Complementary and Alternative Cancer Methods, 149 increasing support of survivorship research and expanding mechanisms for its conduct, 13, 467–468 programs of, 232–233 selected ACS professional education and training programs, 351 Study of Cancer Survivors, 439–442 survivorship-related books, 240 American College of Medical Genetics, 348 American College of Physicians (ACP), 333 American College of Surgeons, 260 Commission on Cancer, 225–226 Oncology Group, 88n American Council of Graduate Medical Education, 330 American Indians, 56, 58 American Institute for Cancer Research (AICR), 147 nutritional guidelines for cancer survivors from, 148 American Joint Committee on Cancer (AJCC), 46 American Journal of Nursing, 339 American Physical Therapy Association (APTA), 340 American Psychological Association (APA), 344 American Psychosocial Oncology Society (APOS), 306, 345 Online Education Program: Survivorship, 347 Referral Directory, 347 American Society of Clinical Oncology (ASCO), 96, 101, 249, 286, 296, 323, 332, 348 National Initiative on Cancer Care Quality, 449 “People Living with Cancer,” 305 Survivorship Task Force, 332 American Society of Colon and Rectal Surgeons (ASCRS), 268 American Society of Head and Neck Surgeons (ASHNS), 280–283 American Society of Plastic and Reconstructive Surgeons (ASPRS), 276 American Urological Association, 260 Americans with Disabilities Act (ADA), 10, 364, 373–378 America’s Health: Principles and Recommendations, 391 Androgen deprivation therapy, 120–121 Anthracycline, 96 Armstrong Foundation. See Lance Armstrong Foundation

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From Cancer Patient to Cancer Survivor: Lost in Transition Aromatase inhibitors, case study in late effects of, 97 Ashkenazi Jews, 101 Assessment tools, health care providers using, 5, 155 Association of American Medical Colleges (AAMC), 323, 455 Association of Cancer Online Resources (ACOR), 216, 242 Association of Community Cancer Centers (ACCC), 228–229 member cancer centers, 229 Association of Oncology Social Work (AOSW), 343, 414 Association of Professional Chaplains, 346 Assurances of privacy HIPAA’s privacy rule, 456–457 of medical records, 454–457 Australia, 102 Autologous transplantation, 138 Availability barriers faced by the uninsured in obtaining private individual insurance, 400 of individual market protections under HIPAA, 404 of state high-risk pools, 401 AVONCares Program, 413 B Barriers faced by the uninsured in obtaining private individual insurance, 400 Barriers facing cancer survivors, 192–200 fragmented delivery system, 192–195 lack of awareness of the late effects of cancer and its treatment, 196–197 potential survivorship quality of care measures, 203 provision of counseling during adult cancer-related ambulatory care visits, United States, 2001-2002, 199 Barriers facing providers, 200–206 capacity for delivering survivorship care, 206–207 difficulties in communication, 203–206 fragmented delivery system hampering delivery of coordinated care, 200–201 lack of education and training, 201 lack of survivorship standards of care, 201–203 Barriers to communication, 197–200 Behavioral Research Center, 465 Bladder cancer, summary of articles describing recent U.S. surveillance practice patterns in, 272–273 Bladder dysfunction, 119–120 Bone damage, 139 Bowel dysfunction, 120 in colorectal cancer, 127 Brachytherapy, 114, 119–120 BRCA mutations, 477–478 Breast cancer. See also Female breast cancer age distribution of incident and prevalent cases of, 52 end-of-treatment consultation notes for, 157–159 by race and ethnicity, age-standardized incidence and death rates for, 51 summary of articles describing recent U.S. surveillance practice patterns in, 254–259 survivors, compared to healthy controls, 86 trends in incidence, mortality, and survival, 49 Breast cancer clinical practice guidelines, 102–111 examples of breast cancer CPG recommendations on follow-up mammography, 112 examples of breast cancer CPG recommendations on menopausal symptom management, 113 Breast Cancer Surveillance Consortium (BCSC), 254 Business and Health, 382 C Canada, 102 Cancer and Careers: Living and Working with Cancer, 241 Cancer and Menopause Study, 91 Cancer as a chronic disease. See also Chronic conditions attitudes, 329 knowledge, 329 required objectives for medical school core curriculum, 329 skills, 329

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From Cancer Patient to Cancer Survivor: Lost in Transition CancerCare, 241, 343, 345, 413 Cancer Care Outcomes Research and Surveillance (CanCORS) Consortium, 443–444 Cancer care trajectory, 190 Cancer Center Support Grants, 223 Cancer clinical trials, 442 Cancer control continuum, 24. See also Comprehensive cancer control plans; State cancer control plans Cancer Control Planet, 244 Cancer Education Grant Program, 349 Cancer Information Service, 329 Cancer of the Prostate Strategic Urologic Research Endeavor (CaPSURE), 443 Cancer Patient Follow-Up, 331 Cancer patient follow-up, creating new research initiatives focused on, 13, 467–468 Cancer prevalence, 31 Cancer programs approved by the American College of Surgeons’ Commission on Cancer, 225–227 Cancer recurrence, 80, 113–114, 133–134 anxiety over the possibility of, 17 in colorectal cancer, and second primary cancer, 123–126 possible late effects among survivors of Hodgkin’s disease, 136–137 Cancer registries, administrative data, and surveys, 446–451 federal health surveys and data, 450–451 NCI’s Cancer Research Network, 449–450 SEER-Medicare linked data, 447–449 state and local cancer registries, 449 Cancer rehabilitation, 297–304 congressional actions affecting cancer rehabilitation, 299 consequences of a lack of evidence, 302–304 evidence regarding the risk of disability and the need for services, 299–300 evidence regarding what services should be provided, 300–301 Medicare coverage of outpatient therapy services, 303 providers of cancer rehabilitation services, 301 where and how services should be delivered, 301–302 Cancer-related hospital and ambulatory care, 219–222 characteristics of cancer-related hospital discharges, United States, 2002, 220 patient’s race/ethnicity and payment source for adult cancer-related ambulatory care visits, by site of care, United States, 2001-2002, 221 Cancer-related job loss, 365 Cancer Research Network (CRN), 449–450 Cancer Source Book for Nurses, 339 Cancer Survivor Virtual Information Center, 205 Cancer survivors, 23–65, 483 cancer control continuum, 24 characteristics of, 30–43 defining, 23–30 distribution of, 32, 35 eliminating discrimination against, 10, 417 ensuring the delivery of appropropriate care to, 3, 150 estimated number of cancer survivors in the United States from 1971 to 2002, 25 five-year relative survival rates, 26 by gender, 38 issues facing, NCI and other organizations helping educate health care providers about, 9, 354 policy makers ensuring that all have access to health insurance, 11, 419–420 possible late effects of radiation therapy, chemotherapy, and hormonal therapy among, 72–73 possible late effects of surgery among, 74 projected number of cancer cases for 2000 through 2050, 27 raising awareness of the needs of, 3, 150 “seasons” of survival, 28 site-specific epidemiology, 43–60 Cancer survivors characterized, 30–43 age, 32–34 cancer prevalence by age, 2002, 31

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From Cancer Patient to Cancer Survivor: Lost in Transition comorbidity, 41–43 disability, 39–41 distribution of cancer survivors by year since diagnosis, 2002, 35 distribution of cancer survivors in the U.S. by site, 2002, 32 distribution of female cancer survivors in the U.S. by site, 2002, 33 distribution of male cancer survivors in the U.S. by site, 2002, 33 estimated percentage of persons alive in the U.S. diagnosed with cancer by current age, 2002, 34 racial, ethnic, and economic characteristics, 34–38 type of cancer, 31–32 years since diagnosis, 34 Cancer survivors’ current employment rights, 373–382 Americans with Disabilities Act, 373–378 Employee Retirement and Income Security Act, 379–380 examples of accommodations of individuals with cancer, 376 Executive Order, 380 Family and Medical Leave Act, 378–379 Federal Rehabilitation Act, 380 resolution of cancer-related ADA charges, 378 state employment rights laws, 380–382 “Cancer Survivors Network,” 232, 305 Cancer survivors who are uninsured, 394–402 health insurance status of cancer survivors, 396–397 limited access to private insurance, 399–402 limited access to public insurance coverage, 398–399 Cancer survivors with health care insurance, 402–413 inadequate health insurance coverage, 404–408 limitations of individual market protections under HIPAA, 404 maintaining health insurance coverage, 402–404 managed care issues, 412–413 Medicare coverage issues, 408–412 Cancer survivorship defining, 29 establishing as a distinct phase of cancer care, 3, 150 raising awareness of, 2–3 Cancer survivorship care barriers to optimal cancer survivorship care, 192–206 challenges in the delivery of selected survivorship services, 295–306 components of a shared-care program tested in a clinical trial, 290 delivering, 187–321 findings and recommendations, 249–253 information on ambulatory care survey data, 288–289 the infrastructure for delivering, 218–248 models for delivering, 206, 207–218 optimal, 188–192 summary of articles describing recent U.S. surveillance practice patterns, by cancer site, 254–287 what has been learned about models in other countries, 289–295 Cancer survivorship research, domains of, 435–436 Cancer voluntary organizations, 384–386 examples of programs providing legal assistance to cancer survivors, 385 teleconferences addressing workplace issues sponsored by CancerCare, 386 Carcino-embryonic antigen (CEA) testing, 123 Cardiotoxicity, 96, 98 Cardiovascular disease, 96–99, 135–138 case study of late effects of, 97 Care plan for survivorship, providing, 3–5, 151–154 “Carve-outs,” 412 Case ascertainment, through cancer registries, 453–454 Case studies in aromatase inhibitors’ late effects, 97 of cardiovascular late effects, 97 of fatigue, 99 of lymphedema, 89 of osteoporosis, 95 Center on an Aging Society, 384, 405

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From Cancer Patient to Cancer Survivor: Lost in Transition Centers for Disease Control and Prevention (CDC), 8, 23, 242, 252, 398, 418, 464 Congress supporting development of comprehensive cancer control plans by, 8, 253 increasing support of survivorship research and expanding mechanisms for its conduct, 13, 467–468 National Action Plan for Cancer Survivorship, 18 National Breast and Cervical Cancer Early Detection Program, 398 Centers for Medicare and Medicaid Services (CMS), 5, 14, 57, 155, 195, 447, 465 increasing support of survivorship research and expanding mechanisms for its conduct, 13, 467–468 supporting demonstration programs to test models of survivorship care, 7, 251 Centers of Excellence in Cancer Communications Research Initiative, 242 Challenges in the delivery of selected survivorship services, 295–306 cancer rehabilitation, 297–304 genetic counseling, 295–297 psychosocial services for women with breast cancer, 304–306 Challenges of survivorship research, 451–457 accruing large and heterogeneous study cohorts through multiple institutions, 453 assuring privacy of medical records, 454–457 case ascertainment through cancer registries, 453–454 informed consent, 454 long-term follow-up, 452–453 Chemotherapy, 85, 96, 138, 157, 249, 478 adjuvant, 81, 90, 94 cognitive decline associated with, 101 CHESS (Comprehensive Health Enhancement Support System), 241–242 Childhood Cancer Survivor Study (CCSS), 196, 444–446 selected recent publications from research conducted using, 445 Children’s Health Insurance Program, 422 Children’s Oncology Group (COG), 139n, 156 Chronic conditions, 329, 478 among cancer patients, by age group, number and percentage of, 42 Clinical practice guidelines (CPGs), 76, 121–122, 139–144, 154, 478 in colorectal cancer, 128–133 counseling to prevent tobacco use: clinical considerations, 143 evidence-based, 156, 334 NCCN CPG follow-up after completion of treatment for Hodgkin’s disease, 140 Clinical trials, 438, 478 of relevance to survivors of adult cancers, 440–441 Clinical Trials Cooperative Group Programs, 438, 467 COBRA (Consolidated Omnibus Budget Reconciliation Act), 12, 364–365, 402–404, 419–420 Cognitive dysfunction, 101, 121 Cohort studies, 438–446, 478 ACS Study of Cancer Survivors, 439–442 Cancer Care Outcomes Research and Surveillance Consortium, 443–444 Cancer of the Prostate Strategic Urologic Research Endeavor (CaPSURE ), 443 Childhood Cancer Survivor Study, 444–446 Prostate Cancer Outcomes Study, 442 the Stanford Hodgkin’s disease experience, 444 Colon cancer, 122 Colonoscopy, 161, 262, 264, 478 Colorectal cancer, 57–59, 122–129 age distribution of incident and prevalent cases of, 60 age-standardized incidence and death rates by race and ethnicity, 58 approaches to colorectal cancer treatment—implications for late effects, 122

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From Cancer Patient to Cancer Survivor: Lost in Transition bowel dysfunction, 127 cancer recurrence and second primary cancer, 123–126 clinical practice guidelines, 128–133 end-of-treatment consultation notes for, 160–161 examples of colorectal cancer CPG recommendations on follow-up colonoscopy, 126 possible late effects among colorectal cancer survivors, 124–125 psychosocial distress, 126–127 risk to family members, 128 sexual function, 127 stage at colorectal cancer diagnosis, by race and ethnicity, 59 summary of articles describing recent U.S. surveillance practice patterns in, 262–269 Colostomy, 120, 478 Commission on Cancer (CoC), 225 Committee on Cancer Survivorship, 392, 419 Committee on Health Care Quality in America, 190 Committee on the Consequences of Uninsurance, 11, 391–392, 419 Communication channels, 290 difficulties in, 203–206 Community-based support services, 229–242 ACS programs, 232–233 ACS survivorship-related books, 240 community-based support targeted to racial and ethnic minority groups, 239–240 guidelines for rehabilitation and for patient advocacy and survivorship, 230–231 selected national community-based psychosocial resources, 234–239 support available by telephone and online, 240–242 survivorship services in selected ACCC cancer centers, 232 targeted to racial and ethnic minority groups, 239–240 The Wellness Community, 233, 238 Comorbidity, 41–43, 478 for all patients and each tumor site, severity of, 43 of cancer survivors, 41–43 number and percentage of chronic conditions among cancer patients, by age group, 42 Complementary and alternative medicine (CAM), 148–149 Comprehensive cancer control and survivorship in Maryland, 248 Comprehensive Cancer Control Leadership Institutes, 246–247 Comprehensive cancer control plans, including survivorship care and review of state plans, Congress supporting development of, 8, 253 Computed tomography (CT) screening, 126 Conditional 5-year relative survival rates breast cancer, 46 colorectal cancer, 47 Hodgkin’s disease, 48 Congress, supporting development of comprehensive cancer control plans, including survivorship care and review of state plans, 8, 253 Congressional actions, affecting cancer rehabilitation, 299 Congressionally Directed Medical Research Programs (CDMRP), 462–463 Continuing education programs for psychosocial care providers, 346–348 American Psychosocial Oncology Society Online Education Program: Survivorship, 347 Continuing medical education (CME), 331–334 examples from recent professional meetings, 332 for nurses, 338–339 Continuing medical education (CME) for physicians, 331–334 oncology, 332–333 physical medicine and rehabilitation, 334 primary care, 333–334 selected examples of survivorship-related PDQ summaries on supportive care, 335 Coordinated survivorship care, demonstration programs to test models of, 7, 251 Cosmetic, Toiletry, and Fragrance Association Foundation, 233

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From Cancer Patient to Cancer Survivor: Lost in Transition Costs for cancer drugs, 410–411 Counseling during adult cancer-related ambulatory care visits, provision of, 199 to prevent tobacco use, clinical considerations, 143 Coverage for evidence-based aspects of care, insurers and payors of health care designing mechanisms to facilitate, 11, 419–420 principles to guide extension of, 392 Cox proportional hazard models, 264 CRISP (Computer Retrieval of Information on Scientific Projects), 458 Crossing the Quality Chasm, 6, 190, 251 Cryopreservation, 94 D Damocles, sword of, 69 Delivery system challenges, overcoming, 6–8, 250–252 Dental caries, 139, 478 Depression, 199 short-term, 160 Derivation of estimates of insurance coverage and medical expenditures, 421–425 Medical Expenditure Panel Survey, 423–425 National Health Interview Survey, 421–422 Digital rectal examination (DRE), 114 Disability, 39–41 of cancer survivors, 39–41 functional limitations in cancer survivors versus those with no history of cancer, 41 instrumental activities of daily living items, 39 limitations in ADL/IADL in cancer survivors versus those with no history of cancer, 40 Discrimination against cancer survivors, eliminating, 10, 417 Diseases of the Breast, 330 Distress Thermometer, 70 Diverse communities, demonstration programs to test models of survivorship care in, 7, 251 DNA damage, 71 Ductal carcinoma in situ (DCIS), 30, 50 E Education and training issues, 337–338 Employee Assistance Professionals Organization, 384 Employee assistance programs (EAPs), 383 Employee Retirement and Income Security Act (ERISA), 373, 379–380 Employees, role of, 383–384 Employers eliminating discrimination and minimizing adverse effects of cancer on employment, 10, 417 tips for, 383 Employment, 363–434 cancer survivors’ current rights to, 373–382 description of methods used to derive estimates of insurance coverage and medical expenditures, 421–425 examples of cancer-related job loss, 365 findings and recommendations, 415–421 health insurance, 390–415 impact of cancer on survivors’ opportunities for, 364–373 life insurance, 415 limitations imposed by cancer and its treatment on patients currently working, 368 minimizing adverse effects of cancer on, 10, 417 programs to ameliorate problems with, 382–389 summary, 390 work limitations by age and self-reported history of cancer, 1998-2000, 370 Employment Assistance Programs (EAPs), 345 Employment opportunities, 364–373 Employment problems cancer voluntary organizations and consumer advocacy programs, 384–386 federal and state government programs, 386–387

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From Cancer Patient to Cancer Survivor: Lost in Transition financial assistance, 387–389 information, support, and referral, 382–387 programs to ameliorate, 382–389 role of employees, 383–384 tips for employers, 383 Employment-related concerns addressing, 9–14 improving access to adequate and affordable health insurance, 11–12 making investments in research, 13–14 End-of-life care, 478 End-of-treatment consultation notes, 157–163 for breast cancer, 157–159 for colorectal cancer, 160–161 for Hodgkin’s disease, 162–163 for prostate cancer, 159–160 Endoscopy, 264, 478 Ensuring Quality Cancer Care, 14, 19, 249, 470 recommendations from, 250 Epidemiological data, 479 from NCI, 23 Equal Employment Opportunities Commission (EEOC), 375, 377 Erectile dysfunction, 118–119, 127 Estrogen, 95 Ethnicity. See Race and ethnicity European Journal of Cancer Care, 335 Forum for Applied Cancer Education and Training, 335–336 European Organization for Research and Treatment of Cancer (EORTC), 465 Evaluation, of existing state cancer control plans, 8, 253 Evidence-based aspects of care consequences of a lack of, 302–304 insurers and payors of health care designing mechanisms to facilitate coverage for, 11, 419–420 regarding the risk of disability and the need for services, 299–300 regarding what services should be provided, 300–301 Evidence-based clinical practice guidelines, systematically developed, health care providers using, 5, 155 Evidence-Based Practice Centers, 5, 155, 479 Executive Order, 380 Experiences of Care and Health Outcomes Among Survivors of NHL (ECHOS-NHL), 461–462 Extended survival, 28 Extension of coverage, principles to guide, 392 Extremity soft-tissue sarcoma, summary of articles describing recent U.S. surveillance practice patterns in, 284–285 F Familial adenomatous polyposis (FAP), 295 Family and Medical Leave Act (FMLA), 365, 373, 378–379, 384 benefits under, 379 Fatigue, 99–101, 138 cancer-related, NCCN practice guideline on, 100 case study of, 99 Federal and state government programs, 386–387 Federal health surveys and data, 450–451 Federally qualified health centers (FQHCs), 402 Federal policy makers, ensuring that all cancer survivors have access to health insurance, 11, 419–420 Federal Rehabilitation Act, 373, 380 Federal research support, 458–464 Agency for Healthcare Research and Quality, 463–464 Centers for Disease Control and Prevention, 464 Department of Defense, 462–463 NCI’s Office of Cancer Survivorship, 459–462 Federal Social Security Administration programs, 388–389 number of SSI recipients eligible because of a cancer diagnosis, by age, December 2003, 389 Federal support for survivorship education and training programs, 349 Female breast cancer, 49–53, 76–111 age distribution of incident and prevalent cases of breast cancer, 52 age-standardized incidence and death rates for breast cancer (female), by race and ethnicity, 51

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From Cancer Patient to Cancer Survivor: Lost in Transition breast cancer clinical practice guidelines, 102–111 cancer recurrence, 80 cardiovascular disease, 96–99 cognitive effects, 101 fatigue, 99–101 lymphedema, 87–89 musculoskeletal complaints, 96 osteoporosis, 95–96 percentage distribution of stage at diagnosis of breast cancer, by race and ethnicity, 51 possible late effects among breast cancer survivors, 82–83 prevalence of selected comorbidities among postmenopausal women with breast cancer, by age, 53 psychosocial distress, 84–87 quality of life, 76–80 reproductive/sexual function, 90–94 risk to family members, 101–102 secondary primary cancer, 81–84 trends in breast cancer incidence, mortality, and survival, 49 weight gain, 94–95 Fertile Hope, 241 Financial assistance, 199, 387–389 federal Social Security Administration programs, 388–389 to help pay for care and other services, programs providing, 413–415 percentage of workers with access to disability insurance benefits, by selected characteristics, private industry, 2004, 388 short- and long-term disability insurance, 387–388 Findings and recommendations, 150–156, 249–253, 352–355, 415–421, 468–470 defining quality health care for cancer survivors, 249–250 developing clinical practice guidelines for survivorship care, 154–156 health services research resources, 469 longitudinal studies, 469 national surveys, 469 NCI cooperative groups, 469 NCI-sponsored special studies, 469 nurses, 355 overcoming delivery system challenges, 250–252 physicians, 354–355 population-based cancer registries, 469 providing a care plan for survivorship, 151–154 research networks, 469 research program projects, 469 social workers and other providers of psychosocial services, 355 SPOREs, 469 survivorship as a public health concern, 252–253 Five-year relative survival rates, 26 Follow-up After Colorectal Surgery (FACS) trial, 129 Follow-up Care Use by Survivors (FOCUS), 461 Follow-up for cancer patients breast cancer CPG recommendations on mammography, 112 colorectal cancer CPG recommendations on colonoscopy, 126 creating new research initiatives focused on, 13, 467–468 long-term, 452–453 Fragmented delivery system, 192–195 hampering delivery of coordinated care, 200–201 Framework PEACE, 146 Frankly Speaking about New Discoveries in Cancer program, 238 Functional limitations, 40 in cancer survivors versus those with no history of cancer, 41 G Genetic counseling, 295–297, 348 Genetic testing, 159, 295, 479 Genetics in Medicine, 348 Georgetown Center on an Aging Society, 21 Gleason scores, 442n Gonadal dysfunction, infertility and, 135 “Good Health for Life,” 386 Government agencies, eliminating discrimination and minimizing adverse effects of cancer on employment, 10, 417

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From Cancer Patient to Cancer Survivor: Lost in Transition Grade, 285, 442, 479 nuclear, 481 Graduate medical education, 330–331 Group health plans, 420 Group life insurance, 415 Group Room (weekly cancer talk radio show), 241 Guide to Complementary and Alternative Cancer Methods, 149 H Head and neck cancers, summary of articles describing recent U.S. surveillance practice patterns in, 282–283 Health care profession capacity, 8–9 Health care providers eliminating discrimination and minimizing adverse effects of cancer on employment, 10, 417 essential content of survivorship training for, 327 identifying and managing late effects of cancer and its treatment, 5, 155 NCI and other organizations helping educate about health care issues facing cancer survivors, 9, 354 Health Education Assets Library (HEAL), 330 Health insurance, 390–415 average annual out-of-pocket expenditures among people reporting cancer-related health effects, 406 cancer survivors who are uninsured, 394–402 cancer survivors with health care insurance, 402–413 impact of cancer on, 390–413 improving access to adequate and affordable, 11–12 maintaining coverage, 402–404 national U.S. Medicare expenditures in 1996 by cancer type and phase of care, 391 people without health insurance coverage by age, United States, 2004, 393 policy makers ensuring that all cancer survivors have access to, 11, 419–420 principles to guide the extension of coverage, 392 programs providing financial assistance to help pay for care and other services, 413–415 sources of payment for health services expenditures among people reporting cancer-related health effects, 405 status of cancer survivors’, 396–397 Health Insurance Portability and Accountability Act (HIPAA), 297, 364, 403–404, 419–420, 454–457, 467 limitations of individual market protections under, 404 privacy rule of, 13, 456–457 Health maintenance organizations (HMOs), 399, 409 Health services research resources, 469 Health systems, quality assurance programs implemented by, 6, 250 HealthCare Chaplaincy, 346 Healthy weight, 147–148 Hemicolectomy, 161, 479 Hereditary nonpolyposis colorectal cancer (HNPCC), 295 Hill-Burton Free Care Program, 413 Hispanic women, 80, 239 History of cancer, 422 Hodgkin’s disease (HD), 59–60, 129–144 age distribution of incident and prevalent cases of, 61 bone damage, 139 cancer recurrence, 133–134 cardiovascular disease, 135–138 clinical practice guidelines, 139–144 dental caries, 139 end-of-treatment consultation notes for, 162–163 fatigue, 138 hypothyroidism, 135 impaired pulmonary function, 138 increased risk of infection, 138 infertility and gonadal dysfunction, 135 nerve damage, 139 psychosocial distress, 134–135 quality of life, 129–133

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From Cancer Patient to Cancer Survivor: Lost in Transition second cancers, 134 summary of articles describing recent U.S. surveillance practice patterns in, 270–271 Home Study Self-Assessment program, 333 “Hope Lodges,” 413 Hormone replacement therapy (HRT), 92, 103, 110, 479 Hypothyroidism, 132, 135, 140, 479 I “I Can Cope” program, 232 Improving Cancer Care in Massachusetts (CAMA) project, 205 Improving Palliative Care for Cancer, 19 Individual Cancer Assistance Network (ICAN) project, 345, 384 Infection, increased risk of, 138 Infertility, and gonadal dysfunction, 135 Information on survivorship, available to cancer survivors and their families, 243 Informed consent, 454 Infrastructure for delivering survivorship care, 218–248 cancer-related hospital and ambulatory care, 219–222 community-based support services, 229–242 statewide comprehensive cancer control, 242–248 survivorship services within cancer centers, 222–229 Institute for Clinical Systems Improvement, Breast Cancer Treatment guideline, 110 Institute for Improving Clinical Care, 195 Institute of Medicine (IOM), 1–2, 18 America’s Health: Principles and Recommendations, 391 Committee on Cancer Survivorship, 392, 419 Committee on Health Care Quality in America, 190 Committee on the Consequences of Uninsurance, 11, 391–392, 419 Crossing the Quality Chasm, 6, 190, 251 Ensuring Quality Cancer Care, 470 Insuring America’s Health, 11 Meeting the Psychosocial Needs of Women with Breast Cancer, 84n Instrumental Activities of Daily Living (IADLs) scales, 39 Insurance status, 422 Insurers, recognizing survivorship care as essential to cancer care, 11, 419–420 Integrated Delivery System Research Network (IDSRN), 463–464 Interdisciplinary survivorship care, demonstration programs to test models of, 7, 251 International Classification of Diseases (Clinical Modification), Ninth Edition (ICD-9-CM), 288, 423 International Psycho-Oncology Society, 352 Ischemia, 98, 480 J Job Accommodation Network (JAN), 377 Joint Commission for the Accreditation of Healthcare Organizations (JCAHO), 225n Journal of Genetic Counseling, 348 Journal of Health Care Chaplaincy, 346 Journal of Pastoral Care and Counseling, 346 Journal of Psychosocial Oncology, 343 Journal of Religion and Health, 346 K Kaplan-Meier analyses, 264, 278, 286 Knowledge about cancer as a chronic disease, 329 transferring, 290 Komen Foundation. See Susan G. Komen Breast Cancer Foundation L Lack of awareness, of the late effects of cancer and its treatment, 196–197 Lack of education and training, 201 Lack of survivorship standards of care, 201–203

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From Cancer Patient to Cancer Survivor: Lost in Transition Lance Armstrong Foundation (LAF), 8, 196, 217, 246, 252, 350, 384, 465 Cancer Survivorship Center, 217 National Action Plan for Cancer Survivorship: Advancing Public Health Strategies, 18, 244 professional education programs supported by, 352 Late effects, 68, 114, 480 among breast cancer survivors, 82–83 among colorectal cancer survivors, 124–125 among prostate cancer survivors, 116–117 among survivors of Hodgkin’s disease, 136–137 Late-term effects of cancer treatment, defining, 69 Legal advocates, eliminating discrimination and minimizing adverse effects of cancer on employment, 10, 417 Legal assistance to cancer survivors, programs providing, 385 Leukemia and Lymphoma Society, 413 Life After Cancer Treatment, 159 Life insurance, 415 percentage of workers with access to life insurance benefits, by selected characteristics, private industry, 2003, 416 Lifestyle following cancer treatment, 140 Limitations imposed by cancer and its treatment in ability to work, support for cancer survivors with short-term and long-term, 10, 417 in ADL/IADL in cancer survivors versus those with no history of cancer, 40 on patients currently working, 368 Limitations of individual market protections under HIPAA, 404 Limitations of state high-risk pools, 401 Limited access to private insurance, 399–402 barriers faced by the uninsured in obtaining private individual insurance, 400 limitations of state high-risk pools, 401 Limited access to public insurance coverage, 398–399 Living Beyond Breast Cancer, 241 Longitudinal studies, 469, 480 Long-term effects of cancer treatment, 68 defining, 69 Long-term follow-up, 452–453 Look Good … Feel Better (LGFB) program, 233 Lumpectomy, 77, 89, 480 Lung cancer, summary of articles describing recent U.S. surveillance practice patterns in, 274–275 Lymphedema, 87–89, 103, 188, 304, 480 case study of, 89 M MacArthur Foundation Midlife Development in the United States (MIDUS) survey, 370 Magnetic resonance imaging (MRI), 112 “Maintenance of Certification” (MOC), 331 Male cancer survivors, distribution of, 33 Mammography, follow-up, examples of breast cancer CPG recommendations on, 112 “Man-to-Man,” 115 Managed care issues, 144, 412–413 Marriage, family, and sex counseling, 345–346 Maryland Comprehensive Cancer Control plan, 248 Mastectomy, 77, 219, 480 MedEd Portal, 330 Medicaid, 144, 388–389, 395, 408, 420, 425 Medical and psychological concerns of cancer survivors after treatment, 66–185 defining late- and long-term effects of cancer treatment, 69 examples of end-of-treatment consultation notes, 157–163 examples of possible late effects of radiation therapy, chemotherapy, and hormonal therapy among survivors of adult cancers, 72–73 examples of possible late effects of surgery among survivors of adult cancers, 74 findings and recommendations, 150–156 lifestyle following cancer treatment, 140

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From Cancer Patient to Cancer Survivor: Lost in Transition overview, 66–76 psychosocial concerns of cancer survivors, 70 quality of life: conceptual model, 68 site-specific review, 76–150 Medical Expenditure Panel Survey (MEPS), 21, 404, 418, 423–425 Medicaid, 425 Medicare, 424–425 other public programs, 425 other sources, 425 out of pocket, 424 private insurance, 424 Medical Research and Materiel Command, Congressionally Directed Medical Research Programs, 462–463 Medicare, 5, 144, 395, 408–412, 420 annual costs for cancer drugs commonly administered to cancer survivors, 410–411 beneficiaries of, 57, 193, 195 coverage issues, 408–412 Diagnostic Related Group payment system, 219 outpatient therapy services, 303 prescription drug plan of, 419 utilization data from, 447 Medicare Coordinated Care Demonstration, 195 Medicare Prescription Drug, Improvement, and Modernization Act, 463 Medigap, 408–409 Meeting the Psychosocial Needs of Women with Breast Cancer, 84n Melanoma, summary of articles describing recent U.S. surveillance practice patterns in, 276–279 Memorial-Sloan Kettering Cancer Center, 217 Menopausal symptom management, breast cancer CPG recommendations on, 113 Metastases, 80, 123, 480 Morbidity, 448, 480 Multiple sites, summary of articles describing recent U.S. surveillance practice patterns in, 286–287 Musculoskeletal complaints, 96 case study in aromatase inhibitors’ late effects, 97 Myelodysplasia, 84, 480 N NAMCS, 288 National Academies, 1, 18 National Action Plan for Cancer Survivorship, 18 advancing public health strategies, 246–247 National Ambulatory Medical Care Survey (NAMCS), 288 National Association of Social Work, 343 National Association of Social Workers, 414 National Breast and Cervical Cancer Early Detection Program, 398 National Cancer Act, 299 National Cancer Advisory Board (NCAB), 455 National Cancer Institute (NCI), 14, 18, 21, 249, 349, 369, 417, 436 Breast Cancer Surveillance Consortium, 254 Cancer Research Network, 449–450 Centers of Excellence in Cancer Communications Research Initiative, 242 Clinical Trials Cooperative Group Programs, 438, 467 cooperative groups sponsored by, 14, 469 designated comprehensive cancer centers, 222–225 epidemiological data from, 23 expansion into rehabilitation, 298 Fact Sheet, 322 helping educate health care providers about issues facing cancer survivors, 9, 354 increasing support of survivorship research and expanding mechanisms for its conduct, 13, 467–468 Life After Cancer Treatment, 159 Office of Cancer Complementary and Alternative Medicine, 149 Office of Cancer Survivorship, 13, 19, 23, 29, 459–462 PDQ (Physician’s Data Query), 129n, 334 SEER Program, 30, 44, 222, 442, 483 sponsoring special studies, 469

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From Cancer Patient to Cancer Survivor: Lost in Transition State of the Science conference on management of menopausal symptoms, 158 supporting demonstration programs to test models of survivorship care, 7, 251 National Cancer Policy Board (NCPB), 18 Ensuring Quality Cancer Care, 19, 249 Improving Palliative Care for Cancer, 19 National Centers for Health Statistics, 288, 423 National Coalition for Cancer Survivorship (NCCS), 23, 27, 188, 238 “Cancer Survival Toolbox: An Audio Resource Program,” 159, 414 definition of cancer survivorship, 29 What Cancer Survivors Need to Know About Health Insurance, 414 National Comprehensive Cancer Network (NCCN) guidelines, 70, 114, 163, 206, 334, 348 National Conference of State Legislators (NCSL), 244 National Cosmetology Association, 233 National Diabetes Quality Improvement Alliance, 202 National Guidelines Clearinghouse (NGC), 5, 103, 155, 334 National Health Interview Survey (NHIS), 39, 369, 394, 421–422, 451 history of cancer, 422 insurance status, 422 NHIS sample size and response rates, 422 number of years since diagnosis, 422 National Health System (U.K.), 198 National Hospital Ambulatory Care Survey (NHAMCS), 288 National Initiative on Cancer Care Quality (NICCQ), 449 National Institute on Aging (NIA), 42 SEER Program, 30, 44, 222, 442, 483 National Institutes of Health (NIH), 18, 450, 458, 463 program education grants related to cancer survivorship, 350 program funding opportunities related to cancer survivorship, 462 National Library of Medicine, 437 National Lymphedema Network, 146, 304 National Research Council, Division of Earth and Life Studies, 18 National Society of Genetic Counselors, 348 National Surgical Adjuvant Breast and Bowel Project, 88 Native Americans. See American Indians Nerve damage, 139 Neurotoxicity, 139 Neutropenia, 162 Nevada Cancer Institute, 217 NHAMCS, 288–289 Nuclear grade, 481 Nueva Vida, 239 Nurse-led model of cancer follow-up care, 211–213 Nurse Oncology Education Program (NOEP), 338 Nurses. See Registered nurses Nurses’ Health Study, 78 Nutrition and diet, 147 nutritional guidelines for cancer survivors from the American Institute for Cancer Research, 148 O Occupational therapists, 341 Office of Cancer Complementary and Alternative Medicine, 149 Office of Cancer Survivorship, 13, 19, 23, 29, 459–462 examples of NIH program funding opportunities related to cancer survivorship, 462 Experiences of Care and Health Outcomes Among Survivors of NHL, 461–462 Follow-up Care Use by Survivors, 461 NIH cancer survivorship grant support, 460 number of cancer survivorship grants awarded by NIH, by year, 460 Office of Disability Employment Policy, Job Accommodation Network, 377 Oncology, 332–333, 481 graduate training in, 9 introduction to, 347 Oncology Nursing Society (ONS), 286, 336, 414

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From Cancer Patient to Cancer Survivor: Lost in Transition Oncology social work, scope of practice, 343 ONCONET, 205 Oophorectomy, 90, 481 preventive, 158 Optimal cancer survivorship care, 188–192 beginning and ending of survivorship care, 189 cancer care trajectory, 190 essential components of survivorship care, 188–189 models for providing survivorship care, 190–192 providers for survivorship care, 190 recommendation from the Institute of Medicine Committee on Health Care Quality in America, 191 Orchiectomy, 120 Osteoporosis, 95–96, 120–121, 158 case study of, 95 P Palliative care, 19, 242, 481 Partners HealthCare, Patient Gateway initiative, 205 Passport for Care, 204 Pastoral counseling, 346 Patient advocacy, 231, 243 Patient advocacy programs, 384–386 examples of programs providing legal assistance to cancer survivors, 385 teleconferences addressing workplace issues sponsored by CancerCare, 386 Patient Advocate Foundation, 414 Patient Gateway initiative, 205 Payment policies, to facilitate coverage for evidence-based aspects of care, insurers and payors of health care designing, 11, 419–420 Payors of health care, recognizing survivorship care as essential to cancer care, 11, 419–420 PDQ (Physician’s Data Query), 129n, 334 Peripheral neuropathy, 132, 481 Permanent survival, 28 Pharmacotherapy, 143 Physical activity, 144–146 Physical medicine and rehabilitation, 334 Physical therapists, 339–340 Physical Therapy, 340 Physician Oncology Education Program (POEP), 333 Physicians, 327–336, 354–355 cancer as a chronic disease: curriculum for survivorship required objectives for medical school core curriculum, 329 continuing medical education, 331–334 graduate medical education, 330–331 other sources of information on cancer survivorship, 334–336 qualifications to provide genetic counseling and recommend genetic testing, 296 undergraduate medical education, 328–330 who provide survivorship care, estimates of the supply of, 324–325 Policy makers, ensuring that all cancer survivors have access to health insurance, 11, 419–420 Population-based cancer registries, 469 Population-specific issues, 347 Positron-emission tomography (PET) scan, 126 Post-traumatic stress disorder (PTSD), 86 Predisposition to cancer, 189 Pregnancy and lactation, 93–94 Premature menopause, 90–93 President’s Cancer Panel, 4–5, 18, 23, 151 Living Beyond Cancer: A European Dialogue, 18, 30 Prevalence, 30, 481 of selected comorbidities among postmenopausal women with breast cancer, by age, 53 of smoking by self-reported history of cancer, 142 Primary care, 333–334 “Primary Care Cancer Lead Clinician,” 290 Primary care physicians, 208, 481 Primary Care Practice-based Research Networks (PBRNs), 463–464 Principles and Practice of Palliative Care and Supportive Oncology, 331 Private health insurers and plans, 424 increasing support of survivorship research and expanding mechanisms for its conduct, 13, 467–468 limited access to, 399–402

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From Cancer Patient to Cancer Survivor: Lost in Transition Private research support, 464–466 American Cancer Society, 465–466 Lance Armstrong Foundation, 465 Susan G. Komen Foundation, 466 Private support for survivorship education and training programs, 350–352 American Cancer Society, 350 International Psycho-Oncology Society, 352 Lance Armstrong Foundation, 350 Susan G. Komen Breast Cancer Foundation, 351 Private voluntary organizations. See Voluntary organizations Professional associations, helping educate health care providers about issues facing cancer survivors, 9, 354 Professional education and training, 323–348 continuing education programs for psychosocial care providers, 346–348 essential content of survivorship training for health care providers, 327 estimates of the supply of selected nonphysician survivorship-related providers, 326 estimates of the supply of selected physicians who provide survivorship care, 324–325 genetic counseling, 348 physicians, 327–336 psychosocial and mental health providers, 341–346 registered nurses, 336–339 rehabilitation specialists, 339–341 Professional education programs, supported by the Lance Armstrong Foundation, 352 Prostate cancer, 54–57, 111–122 age distribution of incident and prevalent cases of, 57 age-standardized incidence and death rates, by race and ethnicity, 55 end-of-treatment consultation notes for, 159–160 by race and ethnicity, age-standardized incidence and death rates for, 55 stage at prostate cancer diagnosis, by race and ethnicity, 56 summary of articles describing recent U.S. surveillance practice patterns in, 260–261 trends in incidence, mortality, and survival, 54 Prostate Cancer Outcomes Study, 442 Prostate Health Education Network (PHEN), 240 Prostate-specific antigen (PSA) screening, 6, 29, 54–55, 111, 160, 249, 442, 481 Psychiatry, 344–345 Psychologists, 344 Psycho-Oncology, 346, 348 Psychological distress, 134 Psychosocial and mental health providers, 341–346 marriage, family, and sex counseling, 345–346 pastoral counseling, 346 psychiatry, 344–345 psychologists, 344 rehabilitation and employment-based counseling, 345 social workers, 342–343 Psychosocial concerns of cancer survivors, 70 Psychosocial distress, 69, 84–87, 115–118, 134–135 breast cancer survivors compared to healthy controls, 86 in colorectal cancer, 126–127 psychosocial issues related to transition points in treatment, 85 Psychosocial Oncology, 348 Psychosocial services, for women with breast cancer, 304–306 Public Health Service Act, 299 Public health strategies, advancing, 246–247 Public insurance coverage, limited access to, 398–399 Public/private partnerships, developing quality of survivorship care measures, 6, 250 PubMed citations, for adult cancer survivorship research, 437 Pulmonary function, 482 impaired, 138

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From Cancer Patient to Cancer Survivor: Lost in Transition Q Quality assurance programs, implemented by health systems, 6, 250 “Quality chasm,” 6, 250 Quality health care, for cancer survivors, defining, 6, 249–250 Quality of life (QOL), 71, 76–80, 115, 129–133, 482 advances in breast cancer treatment: implications for late effects, 78–79 conceptual model of, 68 issues facing cancer survivors, 9, 354 NCI and other organizations helping educate health care providers about, 9, 354 Quality of survivorship care measures, developing, 6, 250 R Race and ethnicity. See also individual racial and ethnic groups age-standardized incidence and death rates by, 37 age-standardized incidence and death rates for breast cancer (female) by, 51 age-standardized incidence and death rates for colorectal cancer by, 58 age-standardized incidence and death rates for prostate cancer by, 55 Racial, ethnic, and economic characteristics, 34–38 age-standardized incidence and death rates, by race and ethnicity, 37 cancer survival among men, all sites combined, 38 cancer survival among women, all sites combined, 38 of cancer survivors, 34–38 Radiotherapy (radiation therapy), 88, 120, 482 cardiac effects of, 98 and thyroid conditions, 249–250 Reach to Recovery program, 232 Recommendations Congress supporting development of comprehensive cancer control plans, including survivorship care and review of state plans, 8, 253 creating new research initiatives focused on cancer patient follow-up, 13, 467–468 developing quality of survivorship care measures, 6, 250 eliminating discrimination against cancer survivors, 10, 417 from Ensuring Quality Cancer Care, 250 health care providers identifying and managing late effects of cancer and its treatment, 5, 155 increasing support of survivorship research and expanding mechanisms for its conduct, 13, 467–468 insurers and payors of health care recognizing survivorship care as essential to cancer care, 11, 419–420 from the IOM Committee on Health Care Quality in America, 191 minimizing adverse effects of cancer on employment, 10, 417 NCI and other organizations helping educate health care providers about issues facing cancer survivors, 9, 354 policy makers ensuring that all cancer survivors have access to health insurance, 11, 419–420 providing patients with a “Survivorship Care Plan” after completing primary treatment, reimbursed by third-party payors, 4, 151 stakeholders working to address cancer survivors needs, 3, 150 supporting demonstration programs to test models of survivorship care, 7, 251 Rectal cancer, 122 Recurrence, 161, 199, 206, 482 Registered nurses, 335–339 continuing nursing education, 338–339 education and training, 337–338 other sources of information on cancer survivorship, 339 Rehabilitation and employment-based counseling, 345 Rehabilitation Oncology, 340

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From Cancer Patient to Cancer Survivor: Lost in Transition Rehabilitation specialists, 339–341 occupational therapists, 341 physical therapists, 339–340 speech-language pathologists, 341 Reimbursement mechanisms, to facilitate coverage for evidence-based aspects of care, insurers and payors of health care designing, 11, 419–420 Relapse prevention, 144, 482 Relative survival rate, 26n, 482 Reproductive/sexual function, 90–94 estimated probability of amenorrhea among breast cancer survivors, by age at diagnosis and treatment modality, 91 pregnancy and lactation, 93–94 premature menopause, 90–93 sexual function, 93 Research focused on cancer patient follow-up, creating new initiatives for, 13, 467–468 making investments in, 13–14 Research mechanisms, 438–451 cancer registries, administrative data, and surveys, 446–451 clinical trials, 438 cohort studies, 438–446 summary, 451 Research networks, 469 Research program projects, 469 Risk to family members, 101–102 in colorectal cancer, 128 Road to Recovery program, 233, 413 Robert Wood Johnson Foundation, 195 S Scotland, 102 Screening guidelines, 203 Screening instruments, health care providers using, 5, 155 “Seasons” of survival, 28 acute survival, 28 extended survival, 28 permanent survival, 28 Secondary cancers, 81–84, 114–115, 134 SEER-Medicare linked data, 447–449 selected survivorship research based on SEER-Medicare data, 448 Seminars in Oncology, 335 Sentinel lymph node biopsy, 88, 483 Sexual function, 93, 118–119, 188, 199 in colorectal cancer, 127 Shared-care model of follow-up care, 208–211 distribution of adult ambulatory cancer care visits, by site of visit, physician specialty, and clinic type, United States, 2001-2002, 209 proportion of adult cancer-related ambulatory care visits for which care was shared by other physicians, by site of care, United States, 2001-2002, 210 Shared-care program tested in a clinical trial active patient involvement, 290 communication channels, 290 components of, 290 knowledge transfer, 290 Sharing Hope program, 414 Short- and long-term disability insurance, 387–388 Sigmoidoscopy, 264, 483 flexible, 262 Sisters Network, Inc., 239–240 Site-specific epidemiology, 43–60 American Joint Committee on Cancer, 46 colorectal cancer, 57–59 female breast cancer, 49–53 Hodgkin’s disease, 59–60 prostate cancer, 54–57 Site-specific review, 76–150 colorectal cancer, 122–129 female breast cancer, 76–111 Hodgkin’s disease, 129–144 prostate cancer, 111–122 summary, 149–150 Sloan-Kettering Post-Treatment Resource Program, 217 Small Business Innovation Research (SBIR) grants, 333 Social Security Administration (SSA), 387–390 Social Security Disability Insurance (SSDI), 389 Social workers, 342–343 and other providers of psychosocial services, 355

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From Cancer Patient to Cancer Survivor: Lost in Transition Social Work in Oncology: Supporting Survivors, Families, and Caregivers, 343 Society of Gynecologic Oncologists, 332 Society of Head and Neck Surgeons (SHNS), 280–283 Society of Surgical Oncology (SSO), 268, 284 Specialized Programs of Research Excellence (SPOREs), 455, 469 Speech-language pathologists, 341 Sponsors of support services, eliminating discrimination and minimizing adverse effects of cancer on employment, 10, 417 Stage, 483 of colorectal cancer diagnosis, by race and ethnicity, 59 of prostate cancer diagnosis, by race and ethnicity, 56 Stamp Out Breast Cancer Act, 463 Stanford Hodgkin’s disease experience, 444 State and local cancer registries, 449 State cancer control plans, Congress supporting development of, 8, 253 State employment rights laws, 380–382 examples of state initiatives on leave policies benefiting cancer survivors, 381 State of the Science conference on management of menopausal symptoms, 158 State policy makers, 246 ensuring that all cancer survivors have access to health insurance, 11, 419–420 Statewide comprehensive cancer control, 242–248 advancing public health strategies, 246–247 comprehensive cancer control and survivorship in Maryland, 248 examples of information on survivorship available to cancer survivors and their families, 243 status of CDC state comprehensive cancer control plans, 245 Steering Committee on Clinical Practice Guidelines for the Care and Treatment of Breast Cancer, 103 Study of Cancer Survivors (SCS), 439–442 cancer clinical trials, 442 examples of clinical trials of relevance to survivors of adult cancers, 440–441 Supplemental Security Income (SSI) program, 388–389 Supply of survivorship care providers, 322–323 Support for cancer survivors Association of Cancer Online Resources, 242 available by telephone and online, 240–242 CancerCare, 241 CHESS, 242 with short-term and long-term limitations in ability to work, 10, 417 sponsors of eliminating discrimination and minimizing adverse effects of cancer on employment, 10, 417 Support for survivorship education and training programs, 349–352 examples of National Institutes of Health program education grants related to cancer survivorship, 350 federal, 349 methods of survivorship continuing education, 353 private, 350–352 Support for survivorship research, increasing, 13, 467–468 Surveillance, 158, 160, 163, 188, 206, 211 Surveillance, Epidemiology, and End Results (SEER) Program, 30, 44, 222, 442, 483 Surveillance practice patterns, by cancer site bladder cancer, 272–273 breast cancer, 254–259 colorectal cancer, 262–269 extremity soft-tissue sarcoma, 284–285 head and neck cancers, 282–283 Hodgkin’s disease, 270–271 lung cancer, 274–275 melanoma, 276–279 multiple sites, 286–287 prostate cancer, 260–261 summary of articles describing, 254–287 upper aerodigestive tract cancer, 280–281 Survival, “seasons” of, 28

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From Cancer Patient to Cancer Survivor: Lost in Transition Survivors. See Cancer survivors Survivorship defining, 23–30 as a public health concern, 8, 252–253 Survivorship care, 483 assessments of, 203 beginning and ending of, 189 capacity for delivering, 206–207 essential components of, 3, 188–189 models for providing, 190–192 providers for, 190 selecting recipients of, 189 “Survivorship Care Plan,” providing patients with, after completing primary treatment, 4, 151 Survivorship care providers findings and recommendations, 352–355 status of professional education and training, 323–348 supply and education and training of, 322–362 supply of, 322–323 support for survivorship education and training programs, 349–352 Survivorship continuing education, methods of, 353 Survivorship follow-up clinics, 213–218 adult cancer survivorship clinics, 214–215 Survivorship interventions, 203 Survivorship quality of care measures, 203 processes of care, 203 screening guidelines, 203 Survivorship-related books, 240 Survivorship research, 434–470, 483–484 based on SEER-Medicare data, 448 challenges of survivorship research, 451–457 domains of, 435–436 findings and recommendations, 468–470 increasing support for, 13, 467–468 mechanisms for conducting research, 438–451 PubMed citations for, 437 status of, 457–467 Survivorship services within cancer centers, 222–229 Association of Community Cancer Centers, 228–229 cancer programs approved by the American College of Surgeons’ Commission on Cancer, 225–227 NCI-designated comprehensive, 222–225 number (and percentage) of programs approved by the American College of Surgeons’ Commission on Cancer that provide support services, 227 selected ACCC, 232 selected survivorship-related standards of the American College of Surgeons’ Commission on Cancer, 226 Survivorship training, for health care providers, essential content of, 327 Susan G. Komen Breast Cancer Foundation, 146, 249, 351, 466 Symptom detection and management, 347 Systems of care, demonstration programs to test models of, 7, 251 T Tamoxifen, 77, 81, 90, 93–94, 96, 98, 110, 158, 409–410 Teleconferences, sponsored by CancerCare, addressing workplace issues, 386 Tender Loving Care (tlc), 233 Texas Cancer Council, 333, 338 Third-party payors, 484 reimbursement by, providing patients with a “Survivorship Care Plan” after completing primary treatment, 4, 151 Thrombocytopenia, 161 Thyroid-stimulating hormone (TSH), 162 tlc, 233 Tobacco, interventions for, 142–143 Toxicity, 90, 159, 484. See also Cardiotoxicity; Neurotoxicity Transplantation, 94, 484 autologous, 138 Transvaginal ultrasound, 84 Trends in breast cancer incidence, mortality, and survival, 49 in prostate cancer incidence, mortality, and survival, 54 Tumor grade, 285, 479 Type of cancer, 31–32

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From Cancer Patient to Cancer Survivor: Lost in Transition U U.K. Medical Research Council, 129 Undergraduate medical education, 328–330 Upper aerodigestive tract cancer (UADT), summary of articles describing recent U.S. surveillance practice patterns in, 280–281 U.S. Army, Medical Research and Materiel Command, 462–463 U.S. Census Bureau, Survey of Income and Program Participation, 40 U.S. Congress, 462 U.S. Department of Defense (DoD), 462–463 U.S. Department of Health and Human Services, 103, 251, 465 U.S. Department of Labor, 375 Office of Disability Employment Policy, 377, 386 U.S. Department of Veterans Affairs (VA), 424–425, 444 increasing support of survivorship research and expanding mechanisms for its conduct, 13, 467–468 supporting demonstration programs to test models of survivorship care, 7, 251 U.S. Preventive Services Task Force, 142 “Us TOO!,” 115 V Vital Options® International, Group Room weekly cancer talk radio show, 241 Voluntary organizations helping educate health care providers about issues facing cancer survivors, 9, 354 increasing support of survivorship research and expanding mechanisms for its conduct, 13, 467–468 W Weight gain, 94–95 Wellness Community, 231, 233, 238 Women’s Health and Cancer Rights Act, 12, 299, 407, 421 Women’s Health Initiative trial, 92, 110 Women’s Healthy Eating and Living (WHEL) Study, 147n Women’s Intervention Nutrition Study (WINS), 147n Work, ability to, support for cancer survivors with short-term and long-term limitations in, 10, 417 Work limitations, by age and self-reported history of cancer, 370 World Wide Web, 241 Y Years since diagnosis, of cancer survivors, 34