From Cancer Patient to Cancer Survivor Lost in Transition (2006) / Chapter Skim
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Pages 485-506
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From page 485... ...
, African-American men, 56 instrumental, 39 African-American women, 50, 80, 239, 366 Acute myelogenous leukemia, 84 African-Americans, 58 Acute survival, 28 oversampling of, 421 Adenocarcinoma, 160 underrepresented among cancer Adequacy barriers survivors, 36 faced by the uninsured in obtaining Age, of cancer survivors, 3234 private individual insurance, 400 Age distribution of incident and prevalent of individual market protections cases under HIPAA, 404 of breast cancer, 52 of state high-risk pools, 401 of colorectal cancer, 60 Adjuvant therapy, 77, 81, 90, 94, 477 of Hodgkin's disease, 61 Adult ambulatory cancer care visits, of prostate cancer, 57 distribution of, 209 485
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From page 486... ...
, 147 supporting demonstration programs nutritional guidelines for cancer to test models of survivorship care, survivors from, 148 7, 251 American Joint Committee on Cancer Alaskan Natives, 56, 58 (AJCC) , 46 Alopecia, 162 American Journal of Nursing, 339 Ambulatory care, 199, 288289, 477 American Physical Therapy Association Ambulatory care survey data, 288289 (APTA)
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From page 487... ...
, 343, 414 age distribution of incident and Association of Professional Chaplains, 346 prevalent cases of, 52 Assurances of privacy end-of-treatment consultation notes HIPAA's privacy rule, 456457 for, 157159 of medical records, 454457 by race and ethnicity, ageAustralia, 102 standardized incidence and death Autologous transplantation, 138 rates for, 51 Availability barriers summary of articles describing recent faced by the uninsured in obtaining U.S. surveillance practice patterns private individual insurance, 400 in, 254259 of individual market protections survivors, compared to healthy under HIPAA, 404 controls, 86 of state high-risk pools, 401 trends in incidence, mortality, and AVONCares Program, 413 survival, 49 Breast cancer clinical practice guidelines, 102111 B examples of breast cancer CPG recommendations on follow-up Barriers faced by the uninsured in obtaining mammography, 112 private individual insurance, 400 examples of breast cancer CPG Barriers facing cancer survivors, 192200 recommendations on menopausal fragmented delivery system, 192195 symptom management, 113 lack of awareness of the late effects of Breast Cancer Surveillance Consortium cancer and its treatment, 196197 (BCSC)
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From page 488... ...
, Cancer Source Book for Nurses, 339 443 Cancer Survivor Virtual Information Cancer Patient Follow-Up, 331 Center, 205 Cancer patient follow-up, creating new Cancer survivors, 2365, 483 research initiatives focused on, 13, cancer control continuum, 24 467468 characteristics of, 3043 Cancer prevalence, 31 defining, 2330 Cancer programs approved by the distribution of, 32, 35 American College of Surgeons' eliminating discrimination against, 10, Commission on Cancer, 225227 417 Cancer recurrence, 80, 113114, 133134 ensuring the delivery of anxiety over the possibility of, 17 appropropriate care to, 3, 150 in colorectal cancer, and second estimated number of cancer survivors primary cancer, 123126 in the United States from 1971 to possible late effects among survivors 2002, 25 of Hodgkin's disease, 136137 five-year relative survival rates, 26 Cancer registries, administrative data, and by gender, 38 surveys, 446451 issues facing, NCI and other federal health surveys and data, 450 organizations helping educate 451 health care providers about, 9, 354 NCI's Cancer Research Network, policy makers ensuring that all have 449450 access to health insurance, 11, SEER-Medicare linked data, 447449 419420 state and local cancer registries, 449 possible late effects of radiation Cancer rehabilitation, 297304 therapy, chemotherapy, and congressional actions affecting cancer hormonal therapy among, 7273 rehabilitation, 299 possible late effects of surgery among, consequences of a lack of evidence, 74 302304 projected number of cancer cases for evidence regarding the risk of disability 2000 through 2050, 27 and the need for services, 299300 raising awareness of the needs of, 3, evidence regarding what services 150 should be provided, 300301 "seasons" of survival, 28 Medicare coverage of outpatient site-specific epidemiology, 4360 therapy services, 303 Cancer survivors characterized, 3043 providers of cancer rehabilitation age, 3234 services, 301 cancer prevalence by age, 2002, 31
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From page 489... ...
diagnosed with cancer tested in a clinical trial, 290 by current age, 2002, 34 delivering, 187321 racial, ethnic, and economic findings and recommendations, 249 characteristics, 3438 253 type of cancer, 3132 information on ambulatory care years since diagnosis, 34 survey data, 288289 Cancer survivors' current employment the infrastructure for delivering, 218 rights, 373382 248 Americans with Disabilities Act, 373 models for delivering, 206, 207218 378 optimal, 188192 Employee Retirement and Income summary of articles describing recent Security Act, 379380 U.S. surveillance practice patterns, examples of accommodations of by cancer site, 254287 individuals with cancer, 376 what has been learned about models Executive Order, 380 in other countries, 289295 Family and Medical Leave Act, 378 Cancer survivorship research, domains of, 379 435436 Federal Rehabilitation Act, 380 Cancer voluntary organizations, 384386 resolution of cancer-related ADA examples of programs providing legal charges, 378 assistance to cancer survivors, 385 state employment rights laws, 380382 teleconferences addressing workplace "Cancer Survivors Network," 232, 305 issues sponsored by CancerCare, Cancer survivors who are uninsured, 394 386 402 Carcino-embryonic antigen (CEA)
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From page 490... ...
, 5, 14, 57, 155, evidence-based, 156, 334 195, 447, 465 NCCN CPG follow-up after increasing support of survivorship completion of treatment for research and expanding Hodgkin's disease, 140 mechanisms for its conduct, 13, Clinical trials, 438, 478 467468 of relevance to survivors of adult supporting demonstration programs cancers, 440441 to test models of survivorship care, Clinical Trials Cooperative Group 7, 251 Programs, 438, 467 Centers of Excellence in Cancer COBRA (Consolidated Omnibus Budget Communications Research Reconciliation Act) , 12, 364365, Initiative, 242 402404, 419420 Challenges in the delivery of selected Cognitive dysfunction, 101, 121 survivorship services, 295306 Cohort studies, 438446, 478 cancer rehabilitation, 297304 ACS Study of Cancer Survivors, 439 genetic counseling, 295297 442 psychosocial services for women with Cancer Care Outcomes Research and breast cancer, 304306 Surveillance Consortium, 443444 Challenges of survivorship research, 451 Cancer of the Prostate Strategic 457 Urologic Research Endeavor accruing large and heterogeneous (CaPSURE )
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From page 491... ...
screening, 126 stage at colorectal cancer diagnosis, Conditional 5-year relative survival rates by race and ethnicity, 59 breast cancer, 46 summary of articles describing recent colorectal cancer, 47 U.S. surveillance practice patterns Hodgkin's disease, 48 in, 262269 Congress, supporting development of Colostomy, 120, 478 comprehensive cancer control Commission on Cancer (CoC)
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From page 492... ...
, 458 eliminating discrimination and minimizing adverse effects of Crossing the Quality Chasm, 6, 190, 251 Cryopreservation, 94 cancer on employment, 10, 417 tips for, 383 Employment, 363434 D cancer survivors' current rights to, 373382 Damocles, sword of, 69 description of methods used to derive Delivery system challenges, overcoming, 6 estimates of insurance coverage and 8, 250252 medical expenditures, 421425 Dental caries, 139, 478 examples of cancer-related job loss, Depression, 199 365 short-term, 160 findings and recommendations, 415 Derivation of estimates of insurance 421 coverage and medical health insurance, 390415 expenditures, 421425 impact of cancer on survivors' Medical Expenditure Panel Survey, opportunities for, 364373 423425 life insurance, 415 National Health Interview Survey, limitations imposed by cancer and its 421422 treatment on patients currently Digital rectal examination (DRE) , 114 working, 368 Disability, 3941 minimizing adverse effects of cancer of cancer survivors, 3941 on, 10, 417 functional limitations in cancer programs to ameliorate problems survivors versus those with no with, 382389 history of cancer, 41 summary, 390 instrumental activities of daily living work limitations by age and self items, 39 reported history of cancer, 1998 limitations in ADL/IADL in cancer 2000, 370 survivors versus those with no Employment Assistance Programs (EAPs)
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From page 493... ...
, 465 Centers for Disease Control and Evaluation, of existing state cancer control Prevention, 464 Department of Defense, 462463 plans, 8, 253 Evidence-based aspects of care NCI's Office of Cancer Survivorship, consequences of a lack of, 302304 459462 Federal Social Security Administration insurers and payors of health care designing mechanisms to facilitate programs, 388389 coverage for, 11, 419420 number of SSI recipients eligible because of a cancer diagnosis, by regarding the risk of disability and the need for services, 299300 age, December 2003, 389 regarding what services should be Federal support for survivorship education and training programs, 349 provided, 300301 Evidence-based clinical practice guidelines, Female breast cancer, 4953, 76111 systematically developed, health age distribution of incident and prevalent cases of breast cancer, 52 care providers using, 5, 155 Evidence-Based Practice Centers, 5, 155, 479 age-standardized incidence and death Executive Order, 380 rates for breast cancer (female) , by race and ethnicity, 51
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From page 494... ...
, psychosocial distress, 8487 461 quality of life, 7680 Follow-up for cancer patients reproductive/sexual function, 9094 breast cancer CPG recommendations risk to family members, 101102 on mammography, 112 secondary primary cancer, 8184 colorectal cancer CPG trends in breast cancer incidence, recommendations on colonoscopy, mortality, and survival, 49 126 weight gain, 9495 creating new research initiatives Fertile Hope, 241 focused on, 13, 467468 Financial assistance, 199, 387389 long-term, 452453 federal Social Security Administration Fragmented delivery system, 192195 programs, 388389 hampering delivery of coordinated to help pay for care and other care, 200201 services, programs providing, 413 Framework PEACE, 146 415 Frankly Speaking about New Discoveries percentage of workers with access to in Cancer program, 238 disability insurance benefits, by Functional limitations, 40 selected characteristics, private in cancer survivors versus those with industry, 2004, 388 no history of cancer, 41 short- and long-term disability insurance, 387388 Findings and recommendations, 150156, G 249253, 352355, 415421, 468470 Genetic counseling, 295297, 348 defining quality health care for cancer Genetic testing, 159, 295, 479 Genetics in Medicine, 348 survivors, 249250 developing clinical practice guidelines Georgetown Center on an Aging Society, for survivorship care, 154156 21 Gleason scores, 442n health services research resources, 469 longitudinal studies, 469 Gonadal dysfunction, infertility and, 135 national surveys, 469 "Good Health for Life," 386 Government agencies, eliminating NCI cooperative groups, 469 NCI-sponsored special studies, 469 discrimination and minimizing nurses, 355 adverse effects of cancer on employment, 10, 417
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From page 495... ...
, 5960, 129144 reporting cancer-related health age distribution of incident and effects, 406 prevalent cases of, 61 cancer survivors who are uninsured, bone damage, 139 394402 cancer recurrence, 133134 cancer survivors with health care cardiovascular disease, 135138 insurance, 402413 clinical practice guidelines, 139144 impact of cancer on, 390413 dental caries, 139 improving access to adequate and end-of-treatment consultation notes affordable, 1112 for, 162163 maintaining coverage, 402404 fatigue, 138 national U.S. Medicare expenditures hypothyroidism, 135 in 1996 by cancer type and phase impaired pulmonary function, 138 of care, 391 increased risk of infection, 138 people without health insurance infertility and gonadal dysfunction, 135 coverage by age, United States, nerve damage, 139 2004, 393 psychosocial distress, 134135 quality of life, 129133
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From page 496... ...
See Susan G Komen Committee on Cancer Survivorship, Breast Cancer Foundation 392, 419 Committee on Health Care Quality in L America, 190 Committee on the Consequences of Lack of awareness, of the late effects of Uninsurance, 11, 391392, 419 cancer and its treatment, 196197 Crossing the Quality Chasm, 6, 190, Lack of education and training, 201 251 Lack of survivorship standards of care, Ensuring Quality Cancer Care, 470 201203
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From page 497... ...
, 331 Legal assistance to cancer survivors, programs providing, 385 Male cancer survivors, distribution of, 33 Leukemia and Lymphoma Society, 413 Mammography, follow-up, examples of breast cancer CPG Life After Cancer Treatment, 159 Life insurance, 415 recommendations on, 112 percentage of workers with access to "Man-to-Man," 115 Managed care issues, 144, 412413 life insurance benefits, by selected characteristics, private industry, Marriage, family, and sex counseling, 345 2003, 416 346 Maryland Comprehensive Cancer Control Lifestyle following cancer treatment, 140 Limitations imposed by cancer and its plan, 248 treatment Mastectomy, 77, 219, 480 MedEd Portal, 330 in ability to work, support for cancer survivors with short-term and Medicaid, 144, 388389, 395, 408, 420, 425 long-term, 10, 417 Medical and psychological concerns of cancer survivors after treatment, in ADL/IADL in cancer survivors versus those with no history of 66185 cancer, 40 defining late- and long-term effects of cancer treatment, 69 on patients currently working, 368 Limitations of individual market examples of end-of-treatment protections under HIPAA, 404 consultation notes, 157163 examples of possible late effects of Limitations of state high-risk pools, 401 Limited access to private insurance, 399402 radiation therapy, chemotherapy, barriers faced by the uninsured in and hormonal therapy among survivors of adult cancers, 7273 obtaining private individual insurance, 400 examples of possible late effects of limitations of state high-risk pools, 401 surgery among survivors of adult cancers, 74 Limited access to public insurance coverage, 398399 findings and recommendations, 150 Living Beyond Breast Cancer, 241 156 lifestyle following cancer treatment, 140
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From page 498... ...
, 14, 18, survivors, 410411 21, 249, 349, 369, 417, 436 beneficiaries of, 57, 193, 195 Breast Cancer Surveillance coverage issues, 408412 Consortium, 254 Diagnostic Related Group payment Cancer Research Network, 449450 system, 219 Centers of Excellence in Cancer outpatient therapy services, 303 Communications Research prescription drug plan of, 419 Initiative, 242 utilization data from, 447 Clinical Trials Cooperative Group Medicare Coordinated Care Programs, 438, 467 Demonstration, 195 cooperative groups sponsored by, 14, Medicare Prescription Drug, Improvement, 469 and Modernization Act, 463 designated comprehensive cancer Medigap, 408409 centers, 222225 Meeting the Psychosocial Needs of Women epidemiological data from, 23 with Breast Cancer, 84n expansion into rehabilitation, 298 Melanoma, summary of articles describing Fact Sheet, 322 recent U.S. surveillance practice helping educate health care providers patterns in, 276279 about issues facing cancer Memorial-Sloan Kettering Cancer Center, survivors, 9, 354 217 increasing support of survivorship Menopausal symptom management, breast research and expanding cancer CPG recommendations on, mechanisms for its conduct, 13, 113 467468 Metastases, 80, 123, 480 Life After Cancer Treatment, 159 Morbidity, 448, 480 Office of Cancer Complementary and Multiple sites, summary of articles Alternative Medicine, 149 describing recent U.S.
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From page 499... ...
See American Indians Ensuring Quality Cancer Care, 19, 249 Nerve damage, 139 Improving Palliative Care for Cancer, Neurotoxicity, 139 19 Neutropenia, 162 National Centers for Health Statistics, 288, Nevada Cancer Institute, 217 423 NHAMCS, 288289 National Coalition for Cancer Survivorship Nuclear grade, 481 (NCCS) , 23, 27, 188, 238 Nueva Vida, 239 "Cancer Survival Toolbox: An Audio Nurse-led model of cancer follow-up care, Resource Program," 159, 414 211213 definition of cancer survivorship, 29 Nurse Oncology Education Program What Cancer Survivors Need to (NOEP)
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From page 500... ...
scan, Partners HealthCare, Patient Gateway 126 initiative, 205 Post-traumatic stress disorder (PTSD) , 86 Passport for Care, 204 Predisposition to cancer, 189 Pastoral counseling, 346 Pregnancy and lactation, 9394 Patient advocacy, 231, 243 Premature menopause, 9093 Patient advocacy programs, 384386 President's Cancer Panel, 45, 18, 23, 151 examples of programs providing legal Living Beyond Cancer: A European assistance to cancer survivors, 385 Dialogue, 18, 30 teleconferences addressing workplace Prevalence, 30, 481 issues sponsored by CancerCare, of selected comorbidities among 386 postmenopausal women with Patient Advocate Foundation, 414 breast cancer, by age, 53 Patient Gateway initiative, 205 of smoking by self-reported history of Payment policies, to facilitate coverage for cancer, 142 evidence-based aspects of care, Primary care, 333334 insurers and payors of health care "Primary Care Cancer Lead Clinician," 290 designing, 11, 419420 Primary care physicians, 208, 481 Payors of health care, recognizing Primary Care Practice-based Research survivorship care as essential to Networks (PBRNs)
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From page 501... ...
See Psychologists, 344 Voluntary organizations Psycho-Oncology, 346, 348 Professional associations, helping educate Psychological distress, 134 health care providers about issues Psychosocial and mental health providers, facing cancer survivors, 9, 354 341346 Professional education and training, 323 marriage, family, and sex counseling, 348 345346 continuing education programs for pastoral counseling, 346 psychosocial care providers, 346 psychiatry, 344345 348 psychologists, 344 essential content of survivorship rehabilitation and employment-based training for health care providers, counseling, 345 327 social workers, 342343 estimates of the supply of selected Psychosocial concerns of cancer survivors, nonphysician survivorship-related 70 providers, 326 Psychosocial distress, 69, 8487, 115118, estimates of the supply of selected 134135 physicians who provide breast cancer survivors compared to survivorship care, 324325 healthy controls, 86 genetic counseling, 348 in colorectal cancer, 126127 physicians, 327336 psychosocial issues related to psychosocial and mental health transition points in treatment, 85 providers, 341346 Psychosocial Oncology, 348 registered nurses, 336339 Psychosocial services, for women with rehabilitation specialists, 339341 breast cancer, 304306 Professional education programs, Public Health Service Act, 299 supported by the Lance Armstrong Public health strategies, advancing, 246247 Foundation, 352 Public insurance coverage, limited access Prostate cancer, 5457, 111122 to, 398399 age distribution of incident and Public/private partnerships, developing prevalent cases of, 57 quality of survivorship care age-standardized incidence and death measures, 6, 250 rates, by race and ethnicity, 55 PubMed citations, for adult cancer end-of-treatment consultation notes survivorship research, 437 for, 159160 Pulmonary function, 482 by race and ethnicity, age-standardized impaired, 138 incidence and death rates for, 55 stage at prostate cancer diagnosis, by race and ethnicity, 56
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From page 502... ...
See also individual Care Quality in America, 191 racial and ethnic groups minimizing adverse effects of cancer on employment, 10, 417 age-standardized incidence and death rates by, 37 NCI and other organizations helping age-standardized incidence and death educate health care providers about issues facing cancer rates for breast cancer (female) by, 51 survivors, 9, 354 age-standardized incidence and death policy makers ensuring that all cancer survivors have access to health rates for colorectal cancer by, 58 age-standardized incidence and death insurance, 11, 419420 rates for prostate cancer by, 55 providing patients with a "Survivorship Care Plan" after Racial, ethnic, and economic characteristics, 3438 completing primary treatment, age-standardized incidence and death reimbursed by third-party payors, 4, 151 rates, by race and ethnicity, 37 cancer survival among men, all sites stakeholders working to address combined, 38 cancer survivors needs, 3, 150 supporting demonstration programs cancer survival among women, all sites combined, 38 to test models of survivorship care, of cancer survivors, 3438 7, 251 Rectal cancer, 122 Radiotherapy (radiation therapy)
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From page 503... ...
, 387 acute survival, 28 390 extended survival, 28 Social Security Disability Insurance (SSDI) , permanent survival, 28 389 Secondary cancers, 8184, 114115, 134 Social workers, 342343 SEER-Medicare linked data, 447449 and other providers of psychosocial selected survivorship research based services, 355 on SEER-Medicare data, 448
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From page 504... ...
, 455, 469 Association of Cancer Online Speech-language pathologists, 341 Resources, 242 Sponsors of support services, eliminating available by telephone and online, discrimination and minimizing 240242 adverse effects of cancer on CancerCare, 241 employment, 10, 417 CHESS, 242 Stage, 483 with short-term and long-term of colorectal cancer diagnosis, by race limitations in ability to work, 10, and ethnicity, 59 417 of prostate cancer diagnosis, by race sponsors of eliminating discrimination and ethnicity, 56 and minimizing adverse effects of Stamp Out Breast Cancer Act, 463 cancer on employment, 10, 417 Stanford Hodgkin's disease experience, 444 Support for survivorship education and State and local cancer registries, 449 training programs, 349352 State cancer control plans, Congress examples of National Institutes of supporting development of, 8, 253 Health program education grants State employment rights laws, 380382 related to cancer survivorship, 350 examples of state initiatives on leave federal, 349 policies benefiting cancer methods of survivorship continuing survivors, 381 education, 353 State of the Science conference on private, 350352 management of menopausal Support for survivorship research, symptoms, 158 increasing, 13, 467468 State policy makers, 246 Surveillance, 158, 160, 163, 188, 206, 211 ensuring that all cancer survivors have Surveillance, Epidemiology, and End access to health insurance, 11, Results (SEER) Program, 30, 44, 419420 222, 442, 483 Statewide comprehensive cancer control, Surveillance practice patterns, by cancer site 242248 bladder cancer, 272273 advancing public health strategies, breast cancer, 254259 246247 colorectal cancer, 262269 comprehensive cancer control and extremity soft-tissue sarcoma, 284285 survivorship in Maryland, 248 head and neck cancers, 282283 examples of information on Hodgkin's disease, 270271 survivorship available to cancer lung cancer, 274275 survivors and their families, 243 melanoma, 276279 status of CDC state comprehensive multiple sites, 286287 cancer control plans, 245 prostate cancer, 260261 Steering Committee on Clinical Practice summary of articles describing, 254 Guidelines for the Care and 287 Treatment of Breast Cancer, 103 upper aerodigestive tract cancer, 280 Study of Cancer Survivors (SCS)
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From page 505... ...
of programs beginning and ending of, 189 approved by the American College capacity for delivering, 206207 of Surgeons' Commission on essential components of, 3, 188189 Cancer that provide support models for providing, 190192 services, 227 providers for, 190 selected ACCC, 232 selecting recipients of, 189 selected survivorship-related standards "Survivorship Care Plan," providing of the American College of Surgeons' patients with, after completing Commission on Cancer, 226 primary treatment, 4, 151 Survivorship training, for health care Survivorship care providers providers, essential content of, 327 findings and recommendations, 352 Susan G Komen Breast Cancer 355 Foundation, 146, 249, 351, 466 status of professional education and Symptom detection and management, 347 training, 323348 Systems of care, demonstration programs supply and education and training of, to test models of, 7, 251 322362 supply of, 322323 support for survivorship education T and training programs, 349352 Survivorship continuing education, Tamoxifen, 77, 81, 90, 9394, 96, 98, methods of, 353 110, 158, 409410 Teleconferences, sponsored by CancerCare, Survivorship follow-up clinics, 213218 adult cancer survivorship clinics, 214 addressing workplace issues, 386 215 Tender Loving Care (tlc)
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From page 506... ...
, Work, ability to, support for cancer 424425, 444 survivors with short-term and increasing support of survivorship long-term limitations in, 10, 417 research and expanding Work limitations, by age and self-reported mechanisms for its conduct, 13, history of cancer, 370 467468 World Wide Web, 241 supporting demonstration programs to test models of survivorship care, 7, 251 Y U.S. Preventive Services Task Force, 142 Years since diagnosis, of cancer survivors, "Us TOO!
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