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
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
Alopecia, 162
Ambulatory care, 199, 288–289, 477
Ambulatory care survey data, 288–289
NAMCS, 288
NHAMCS, 288–289
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 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
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
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
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 control continuum, 24
characteristics of, 30–43
defining, 23–30
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
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
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
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
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
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
NCCN CPG follow-up after completion of treatment for Hodgkin’s disease, 140
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
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
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
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
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
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
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
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
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
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
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
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
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
Hereditary nonpolyposis colorectal cancer (HNPCC), 295
Hill-Burton Free Care Program, 413
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
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
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
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
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
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
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
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
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
N
NAMCS, 288
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
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
graduate training in, 9
introduction to, 347
Oncology social work, scope of practice, 343
ONCONET, 205
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
Partners HealthCare, Patient Gateway initiative, 205
Passport for Care, 204
Pastoral counseling, 346
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
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
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
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
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
Q
Quality assurance programs, implemented by health systems, 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
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
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
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
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
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
See also Cardiotoxicity;
Neurotoxicity
autologous, 138
Transvaginal ultrasound, 84
Trends
in breast cancer incidence, mortality, and survival, 49
in prostate cancer incidence, mortality, and survival, 54
Type of cancer, 31–32
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