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Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

Suggested Citation:"Index." Institute of Medicine and National Research Council. 2006. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press. doi: 10.17226/11468.
×

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

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With the risk of more than one in three getting cancer during a lifetime, each of us is likely to experience cancer, or know someone who has survived cancer. Although some cancer survivors recover with a renewed sense of life and purpose, what has often been ignored is the toll taken by cancer and its treatment—on health, functioning, sense of security, and well-being. Long lasting effects of treatment may be apparent shortly after its completion or arise years later. The transition from active treatment to post-treatment care is critical to long-term health.

From Cancer Patient to Cancer Survivor focuses on survivors of adult cancer during the phase of care that follows primary treatment. The book raises awareness of the medical, functional, and psychosocial consequences of cancer and its treatment. It defines quality health care for cancer survivors and identifies strategies to achieve it. The book also recommends improvements in the quality of life of cancer survivors through policies that ensure their access to psychosocial services, fair employment practices, and health insurance.

This book will be of particular interest to cancer patients and their advocates, health care providers and their leadership, health insurers, employers, research sponsors, and the public and their elected representatives.

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