National Academies Press: OpenBook
« Previous: Committee and Staff Biographies
Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×

Index

A

Access to care, 81-82, 85, 109, 110, 114-115, 190

medically underserved persons, defined, 9, 39, 44-45

poverty and, 40-42, 43

special populations, general, 44, 45

see also Health insurance

Accountability, 10, 151

monitoring and reporting, 8, 138

NCI, 7, 129, 134, 138-140, 140-141, 152, 174

Acquired immunodeficiency syndrome,

see AIDS

Adolescents, 30, 101, 102-103, 120-121

Advisory bodies, 6, 11, 12, 100, 103, 156, 158-159, 166, 169-174, 184, 185, 186

Advisory Committee on Research on Minority Health, 100

African Americans, 14, 74, 117, 121-123, 215, 283

AIDS, 145, 146

Black Leadership Initiative on Cancer, 18, 24, 128, 129, 160

breast cancer, 1, 14, 28, 30, 57, 69, 72-73, 111, 112, 115, 116, 119, 126, 128-129, 163-164, 165, 201, 204, 215, 224, 302, 308

cancer incidence, 1, 52, 53, 60, 91, 111-113 (passim), 116-118, 142, 166, 200, 201

Cancer Prevention Awareness Program, 18

cervical and uterine cancer, 29, 53, 54, 56, 57, 116, 119, 123, 250, 303, 310

classification of, 3, 36, 82, 248

clinical trials, 14, 122-123, 124, 165, 188, 191, 195, 197-198, 200-211 (passim), 213

colorectal cancer, 58, 122-123

diet, 112-113, 121-122, 283

genetic research, 149-150, 166, 189

historically black colleges and universities, 135-136, 149, 153, 164, 165-166, 286, 288

human T-cell lymphotrophic virus, 114, 116

journal articles on, 224, 226-227, 239, 240-241

lung cancer, 52, 53, 115, 122-123

men, 1, 52, 53, 58, 109, 112, 163, 188, 197-198, 203, 206, 300-313

mortality, 1, 24, 28, 29, 30, 53, 58, 69, 72-73, 91, 129, 142, 163, 166, 252, 253, 300-313

pancreatic cancer, 118, 301, 309

patient education, 128

poor, 43, 49, 71-72, 91, 123

preventive measures, general, 18, 118-119, 136, 142, 207-211 (passim)

Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×

prostate cancer, 53, 69, 109, 111-113, 115, 122, 197-198, 201, 224, 305, 312

public education, 18, 128, 129, 142

research involvement by professionals, 132, 134, 145, 156, 166, 172

rural areas, 9, 48-49, 53, 78, 113, 143-144

smoking, 29-30, 118-119, 120

surveillance, 3, 74, 109, 111-113, 115-118 (passim), 126, 128-129, 143-146, 149

SEER, 9, 24, 47, 48-49, 53, 58, 59, 60, 78, 82, 108, 111-112, 206, 210

survivorship, 57, 59, 82, 91, 111, 129, 142

urban areas, 49, 119, 129

women, 1, 14, 28, 30, 69, 112, 115, 116, 123, 126, 128-129, 163-164, 165, 201, 204, 205, 206, 210, 215, 250, 300-313

Aged persons,

see Elderly persons

Agency for Health Care Policy and Research, 115

Agricultural workers, 114, 117, 143-144

AIDS, 113-114, 116, 146

funding, 97, 99, 101, 102-103, 145

Alaska Natives,

see American Indians/Alaska Natives

Alcohol consumption, 116-117

Alternative therapies,

see Natural remedies

American Anthropological Association, 34, 83

American Cancer Society, 28, 40, 59, 60, 80, 120, 193, 194, 225, 240

American College of Surgeons, 59, 80

American Digestive Health Foundation, 117

American Indians/Alaska Natives, 19, 24, 123, 128, 130-131

Behavioral Risk Factor Surveillance Survey, 73

cancer incidence, 52, 61-62, 64, 65, 66-67, 113

cancer sites, various, 61-64, 66-67, 68, 109, 113, 114, 123

cervical and uterine cancer, 53, 54, 56, 57, 67, 303, 310

classification of, 3, 9, 34, 36, 44, 65, 82

clinical trials, recruitment, 124, 194-195 199, 201, 204, 208-209

defined, 36

diet, 119, 284

Indian Health Service, 64, 65, 112, 113, 199

journal articles on, 224-225, 226-227, 239, 240-241

leadership initiative, 24

mammography, 75, 76

men, 62-64, 65, 66, 300-313

mortality, 61, 62-64, 252-254, 300-313

poor, 43, 71-72

preventive measures, 61, 111, 119, 121, 130-131, 142, 208-209

public education, 121, 128, 129, 130-131, 216, 284

regional factors, 64, 65

research by and professional training for, 131, 132, 134, 156, 172

screening, 75, 76, 123, 128

smoking, 29-30, 119

surveillance, 61-64, 69, 74, 75, 111, 112, 113, 131

SEER, 9, 49, 52, 61-64, 65, 79, 107-108, 201

survival rates, 2, 61, 68, 88

women, 62-63, 64, 65, 67, 75, 204, 205, 300-313

American Stop Smoking Intervention Study, 120

Appalachia, 2, 9, 20, 24, 48, 52, 53, 61, 78, 128, 130, 155, 160, 165, 281

Appalachian Leadership Institute, 20, 24, 128, 130, 155, 160, 281

Asians/Pacific Islanders, 89, 114, 116, 117, 118, 189

cancer incidence, 1, 3, 53, 54, 60

cancer sites, 12, 55-56, 57, 116-117

Chinese, 49, 50, 52, 54-57, 83, 89, 107, 108, 116, 117, 123, 163

classification of, 34, 36, 44, 82, 83, 168

clinical trials, recruitment, 122, 123, 124, 196, 197, 201, 204, 208-209, 210

hepatitis and liver cancer, 12

journal articles on, 224, 226-227, 239, 240-241

leadership initiative, 131

mortality, 28, 55-56, 60, 253, 296, 300-313

poor, 43, 71-72

prevention, 120, 121

professional education, 132

researchers, 131, 132, 156, 171, 172

smoking, 30, 120, 197

surveillance, 60, 110

SEER, 49, 53, 60, 79, 107, 201

Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×

survivorship, 57, 111

Vietnamese, 30, 123

women, 1, 28, 75-76, 116, 129, 164

Attitudes, 110, 128-129

fatalism, 14-15, 164, 196, 197-198, 240, 243

mistrust of research community, 188-189, 191, 195, 198, 210, 211-212, 229

poor persons, 41-42

research recommendations, 4, 7

survivors of cancer, 231, 240, 243, 244

see also Cultural factors

B

Behavioral risk factors, 15, 70, 73, 85, 282

alcohol consumption, 116-117

''ethnic group" defined, 8-9

genetic vs, 4, 8, 44, 82-84, 85, 86, 89, 92

NCI programs, 5, 6, 10, 89-90, 110-111, 115, 151-153, 176

NIH, general, 15

poor persons, 40

see also Attitudes;

Cultural factors;

Diet and nutrition;

Smoking;

Social factors

Behavioral Risk Factor Surveillance Survey, 73

Black Leadership Initiative on Cancer, 18, 24, 128, 129, 160

Blacks,

see African Americans

Black/White Cancer Survival Study, 111

Bladder cancer, 26, 124

Breast cancer, 19, 25, 164

African Americans, 1, 14, 28, 30, 57, 69, 72-73, 111, 112, 115, 116, 119, 126, 128-129, 163-164, 165, 201, 204, 215, 224, 302, 308

attitudes about, 128-129

clinical trials, 14, 30, 122, 124, 164, 165, 204, 208, 210

funding, 97, 99

genetics of, 85-86

Hispanics, 30, 69, 75, 76, 126, 164, 250, 302, 303, 308, 310

mortality, 1, 28-29, 56, 72-73, 250, 302, 308

prevention, 26, 30, 122

research, 54, 57, 62, 65, 67, 109, 111, 113, 115-116

screening, 219

see also Mammography

survivorship, 231, 234, 240

tamoxifen, 14, 30, 122, 208, 210

treatment, 14, 30, 122, 208, 218

Breast Cancer Prevention Trial, 30, 122, 193

Breast Cancer Resource Committee, 163-164

Breast Cancer Surveillance Consortium, 81, 109, 122

Bronchial cancer, 52, 54-57, 60, 61, 66-67, 300, 307

Brownfields National Partnership Action Agenda, 144

Bureau of the Census, 110, 200, 252

C

Cancer Control Review Group, 78, 84-85

Cancer Cooperative Group Trials, 32, 105, 106, 124, 125, 192, 193, 197, 200-206

Cancer Facts & Figures, 225

Cancer Incidence and Mortality, 1973-1995: A Report Card for the United States, 60

Cancer Information Service, 107, 127-128, 222-224, 238

CANCERLIT, 127, 225

CancerNet, 127

Cancer Prevention Awareness Program, 18

Cancer registries, 249-250

state, 4, 58-60, 64, 68, 79-80, 81

see also Surveillance, Epidemiology, and End Results program

Cancer Survivorship Studies in Established Epidemiologic Cohorts, 235

Case-control studies, 109, 115, 116, 117, 118

Center for Scientific Review, 100

Centers for Disease Control and Prevention, 3, 28, 35, 60, 110, 208

Behavioral Risk Factor Surveillance Survey, 73

National Health and Nutrition Examination Survey, 73-74, 110

National Health Interview Survey, 110, 233, 244-245

state tumor registries, 58-60, 80

Cervical and uterine cancer, 50, 54, 56, 57, 60, 62, 116, 129, 152, 250, 303, 310

African Americans, 29, 53, 54, 56, 57, 116, 119, 123, 250, 303, 310

American Indians, 53, 54, 56, 57, 67, 303, 310

funding, 97, 99

Hispanics, 29, 30, 53, 54, 56, 57, 75, 76, 116, 164, 303, 310

Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×

Pap smears, 30, 40, 50, 70, 73, 75, 76, 89, 115, 123, 129, 164, 167, 208, 219, 254, 256

quality of life, 233

Chemotherapy, 14, 30, 122, 196, 207-208

finasteride, 122, 208

tamoxifen, 14, 30, 122, 208, 210

Children, 26, 114, 121

adolescents, 30, 101, 102-103, 120-121

clinical trials, 124, 200, 202-203, 204, 211

Chinese, 49, 50, 52, 54-57, 83, 89, 107, 108, 116, 117, 123, 163

Clinical Investigator Award for Research on Special Populations, 133

Clinical practice guidelines, 214, 216, 217-222, 224, 228

survivorship, 233-234

Clinical trials, 13-14, 31, 104, 106, 115, 122, 124-125, 127, 187

African Americans, 14, 122-123, 124, 165, 188, 191, 195, 197-198, 200-211 (passim), 213

American Indians/Alaska Natives, 124, 194-195, 199, 201, 204, 208-209

Asians/Pacific Islanders, 122, 123, 124, 196, 197, 201, 204, 208-209, 210

breast cancer, 14, 30, 122, 124, 164, 165, 204, 208, 210

Cancer Cooperative Group Trials, 32, 105, 106, 124, 125, 192, 193, 197, 200-206

children, 124, 200, 202-203, 204, 211

Community Clinical Oncology Program, 106, 124-125, 192, 206-207, 210

cultural factors, 188-189, 191, 194-199, 210, 211-212, 213, 229

elderly persons, 196, 201, 205, 212

evaluation of data, 221

funding/financing, 7, 14, 97, 99, 101, 125, 189, 190, 191, 193, 195, 198, 199, 211, 229

gender factors, 190, 191

Hispanics, 123, 124, 146, 196-197, 200-203 (passim), 208-210 (passim)

informed consent, 7, 14, 188-189, 192, 196, 198-199, 212, 229

insurance financing, 195, 211, 229

literacy issues, 191, 192, 199, 214

men, 188, 197-198, 203, 204-205, 206

minority group recruitment, 123, 124-125, 128, 192-194, 202, 206-214

see also specific groups supra

mistrust of research community, 188-189, 191, 195, 198, 210, 211-212, 229

NIH policy, 187, 190-191, 211, 279

PLCO Cancer Screening Trial, 115, 122-123, 137, 193, 208, 213

poor persons, 112, 124, 189, 195, 211, 214

preventive interventions, 7, 14, 206, 207-211

professional education and, 213-214

recruitment and retention of minorities, 2, 7, 14, 19, 21, 98, 101 -102, 112, 123, 124-125, 128, 146-147, 164, 165, 177-178, 187-214, 225-226, 228-229

costs of, 190, 191, 195, 198, 199, 211, 229

NCI efforts, 123, 124-125, 128, 192-194, 202, 206-214, 225-226, 228 -229, 279

proportional representation, general, 193, 199-200

survivors of cancer, 196, 197-198

rural areas, 7, 124, 188, 214, 229

socioeconomic status, 190, 229

survivors of cancer, recruitment, 196, 197-198

urban areas, 7, 189, 197-198, 207, 229

women, 19, 112, 177, 178, 190, 191, 199, 200, 203, 204-205, 210

Clinical Trials Cooperative Group program, 106, 192, 193

Cohort studies, 109

Colorectal cancer, 29, 52, 54-57, 58, 60, 61, 62, 63, 64, 66-67, 117-118, 250, 302, 308

African Americans, 58, 122-123

clinical trials, 201, 204, 208

funding, 97, 99

screening, 115, 122-123, 137, 193, 208, 213, 218

Community-based programs, 17, 73, 103-107 (passim), 119, 120, 121, 124-125, 128, 129, 130, 141-142, 161-165, 168, 213, 287

professional education, 31, 187, 197, 198, 217-219

Community Clinical Oncology Program, 106, 124-125, 192, 206-207, 210, 219

Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×

Comprehensive Minority Biomedical Section, 18, 131-132

Consortium Cancer Center, 18

Consumer information,

see Public education

Continuing Surveys of Food Intakes by Individuals, 110

Cooperative Minority Biomedical Program, 18

Cost and cost-benefit factors, 114-115, 168

breast cancer screening, 114-115

cancer, national cost, 45

clinical trials, recruitment, 190, 191, 195, 198, 199, 211, 229

survivors of cancer, 236

see also Funding;

Health insurance

Cultural factors, 111, 142, 176, 216, 260

clinical trials, 188-189, 191, 194-199, 210, 211-212, 213, 229

ethnicity defined, 8-9, 34, 35, 38

fatalism, 14-15, 164, 196, 197-198, 240, 243

genetic/behavioral vs, 4, 8, 44, 82-84, 85, 86, 89, 92

mistrust of research community, 188-189, 191, 195, 198, 210, 211-212, 229

public education and outreach, 128, 167, 284

religious factors, 35, 83, 121, 195-198 (passim), 213, 216, 230, 233

researchers' understanding of, 7, 10-11, 89-90, 194-199

survey instruments, 75, 110

survivors of cancer, 168, 233, 240-242

see also Attitudes;

Language factors;

Social factors

Current Population Survey, 110

D

Databases, 4, 9, 111, 127, 214, 225, 250, 280

CANCERLIT, 127, 225

clinical trials, 191

Internet, 127, 235, 294

MEDLINE, 214

PDQ, 127, 128, 225

see also Cancer registries;

Surveillance, Epidemiology, and End Results program

Data collection and surveillance, 3-4, 33-92

African Americans, 3, 74, 109, 111-113, 115-118 (passim), 126, 128 -129, 143-146, 149

classification of African Americans, 3, 36, 82, 248

SEER, 9, 24, 47, 48-49, 53, 58, 59, 60, 78, 82, 108, 111-112, 206, 210

American Indians/Alaska Natives, 61-64, 69, 74, 75, 111, 112, 113, 131

classification of American Indians, 3, 9, 34, 36, 44, 65, 82

Indian Health Service, 64, 65, 112, 113

SEER, 9, 49, 52, 61-64, 65, 79, 107-108, 201

annual reporting, 4, 92

Asians/Pacific Islanders, 60, 110

SEER, 49, 53, 60, 79, 107, 201

classification of, minority groups, 3, 8-9, 33-38, 44, 49-50, 65, 77, 82, 83, 196, 248-249, 254, 260

cultural factors in survey instruments, 75, 110

Hispanics, 74, 82, 90, 110, 114, 216

classification of Hispanics, 34, 36, 83, 196, 249, 254

SEER, 9, 47, 48, 49, 50, 52, 60, 78-79, 107, 108, 111-112, 206, 210

"medically undeserved" defined, 38-39

National Center for Health Statistics, 28, 46, 58, 60, 80, 108, 109, 250, 251-254

National Coordinating Council for Cancer Surveillance, 8, 80

National Health and Nutrition Examination Survey, 73-74, 110

National Health Interview Survey, 40, 74-75, 110, 233, 244-245

National Medical Expenditure Survey, 75

National Survey of Family Growth, 75-76

NCI, 3-4, 35, 78, 81, 107-112, 279

"special populations" defined, 4, 44-45, 80, 91, 162, 287

special studies by independent researchers, 65-70

survivorship, 111-112, 129, 142, 244

see also Cancer registries;

Clinical trials;

Monitoring and reporting;

Research;

Research recommendations;

Statistical analyses;

Surveillance, Epidemiology, and End Results program

Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×

Department of Agriculture, 110

Department of Defense, 3, 125, 166

Department of Health and Human Services, 51, 216

see also National Cancer Institute;

National Institutes of Health;

other DHHS agencies

Department of Veterans Affairs, 3, 109, 117-118, 166

Detroit Education and Early Detection program, 197-198

Diagnosis,

see Mammography; Pap smears; Screening

Diet and nutrition, 70, 110, 112-113, 115, 116, 117, 118, 120-122, 283-284

African Americans, 112-113, 121-122, 283

historical perspectives, 26, 30

National Health and Nutrition Examination Survey, 73-74, 110

poor persons, 40, 42

research recommendations, 4, 89, 92

Director's Consumer Liaison Group, 169, 170-171, 172, 185, 235, 237, 243

Division of Cancer Control and Population Science, 84, 88-89, 90, 108, 110, 111, 112, 152

Division of Cancer Epidemiology and Genetics, 108, 112, 113, 115-116

Division of Cancer Prevention, 104, 114, 115

Division of Clinical Sciences, 124

Drew-Meharry-Morehouse Consortium Cancer Center, 24

E

Economic factors,

see Cost and cost-benefit factors; Funding; Health insurance; Income; Poverty; Socioeconomic status

Educational attainment, 39, 41, 42, 69, 75, 109, 111-112, 176

clinical trial representation, 205-206, 209

Education and training,

see Patient education; Professional education; Public education

Elderly persons, 115, 136, 254

African Americans, 123

breast cancer, 111

clinical trials, 196, 201, 205, 212

Medicare, 109, 115, 196, 211, 220

Employment and unemployment, 39, 42, 69

occupational risk factors, 24, 47, 69, 109, 114

Environmental exposure

brownfields, 144

environmental justice, 142-143, 168

genetic factors vs, 85, 86

historical perspectives, 23-24, 26

occupational, 24, 47, 69, 109, 114

pesticides, 113, 117, 143-144

poor persons, 142-143, 168

research, general, 4, 113-118, 143, 144, 165, 168

Superfund sites, 144

see also Smoking

Environmental justice, 142-143, 168

Environmental Protection Agency, 117, 143

Esophageal cancer, 26, 113, 117

Ethnic groups,

see Minority groups

Etiology,

see Risk factors

F

Families of cancer patients, 25, 90, 93, 107, 114, 119, 121, 128, 196, 212, 230

Farm workers,

see Agricultural workers

Federal government role,

see Funding; Legislation; specific departments and agencies

Females,

see Women

Finasteride, 122, 208

Food and Drug Administration, 192

Funding, 9, 20, 94-103, 108, 129

AIDS, 97, 99, 101, 102-103, 145

clinical trials, 7, 14, 97, 99, 101, 125, 189, 190, 191, 193, 195, 198, 199, 211, 229

evaluation of research, 6

grant writing, 168

Health Care Financing Administration, 7, 109, 115, 229

historical perspectives, 17, 20, 21, 23

minority recruitment, 19, 20, 21

NCI, 7, 9-10, 12-13, 17, 94-97, 99, 108, 109-110, 134-142, 152

NIH, 10, 94-103, 137, 140-142, 145, 146, 148-149, 151, 211, 246-247

ORMH, 98, 100, 101-103, 150

percent relevancy accounting, 10, 129, 139, 140-141, 152

prevention, 94-95, 99, 102

prioritizing research, 103, 154-169, 174-186

professional education, 6, 10, 19, 20, 21, 94-96, 101-102, 106, 131 -134, 146-147

reporting, 246-247

Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×

research, general, 7, 9-10, 12-13, 17, 94-95, 134-142, 145, 146, 148-149, 161

special populations, general, 109-110, 136

state tumor registries, 58-59

see also Accountability;

Health Care Financing Administration

G

Gallbladder cancer, 66-67

Gender differences, 29, 178

clinical trials, 190, 191

see also Men;

Women

Genetic factors, 44, 45-46, 85-89, 106, 115, 116-117, 118, 126, 166, 237

African Americans, 149-150, 166, 189

attitudes regarding inferiority, 189

clinical trials, 189, 191, 214

cultural/behavioral vs, 4, 8, 44, 82-84, 85, 86, 89, 92

Division of Cancer Epidemiology and Genetics, 108, 112, 113, 115-116

environmental exposure and, 168

historical perspectives, 23, 25, 189

"racial groups" defined, 8-9

Genome research, 88, 101, 126, 149-150

Government role,

see Federal government role; State government role

Guide to Clinical Preventive Services, 216

H

Health Care Financing Administration, 7, 109, 115, 229

Health insurance, 41, 111-112, 115

clinical trials, 195, 211, 229

Health Care Financing Administration role, 7

managed care, 115, 168-169, 211

Medicaid, 211, 217-218

Medicare, 109, 115, 196, 211, 220

uninsured/underinsured persons, 2, 9, 39, 41, 44, 189

Health maintenance organizations, 115, 211

Health United States, 1998, 250

Healthy People 2000, 29-30, 31, 254

Heckler Report, 18

Hepatitis, 12

Hispanic Cancer Network, 281

Hispanic Leadership Initiative on Cancer, 24, 128, 129-130, 160

Hispanic persons, 19, 74, 110, 114, 121, 122, 142

advisory bodies, 171, 172

AIDS, 146

attitudes, 164, 196-197

breast cancer, 30, 69, 75, 76, 126, 164, 250, 302, 308, 303, 310

cancer incidence, 1, 28, 44, 52, 53, 60, 116, 200, 201

cervical and uterine cancer, 29, 30, 53, 54, 56, 57, 75, 76, 116, 164, 303, 310

classification of, 34, 36, 83, 196, 249, 254

clinical trials, 123, 124, 146, 196-197, 200-205 (passim), 208-210 (passim)

Hispanic Leadership Initiative on Cancer, 24, 128, 129-130, 160

journal articles on, 224, 226-227, 239, 240-241

mortality, 29, 44, 253, 254, 300-313

poor, 42, 43, 71-72

preventive interventions, 118-120, 121, 128, 136, 142, 208-210 (passim)

public education, 14, 20, 127-130, 136

research professionals, 132, 134, 147, 162

screening, 75, 76, 122

smoking, 29-30, 119

surveillance, 74, 82, 90, 110, 114, 216

SEER, 9, 47, 48, 49, 50, 52, 60, 78-79, 107, 108, 111-112, 206, 210

survivorship, 57, 68, 240-241

uninsured, 43

women, 75, 89, 210, 300-313

see also Mexican Americans

Historical perspectives, viii, 16-32

black educational institutions, 135-136, 149, 153, 164, 165-166, 286, 288

clinical trials, 90, 188-189, 190

data collection categories, 3, 8, 33-34

funding, 17, 20, 21, 23

genetic factors, 23, 25, 189

lung cancer, 16, 26, 27

mortality rates, 16, 26, 27, 28

National Cancer Program, 18-22

NCI, 16, 17, 19-22, 23, 27-32, 93-103

ORMH, 19-20, 97-98

preventive interventions, 18, 24-25, 26-27

professional education, 16, 19, 20, 21, 22, 93-94

public education, 16, 20, 27

smoking, 18, 23, 26, 27, 28, 29-30, 31

special populations, 21-22, 24, 27

treatment, 26, 27

see also Projections

Human Genome Project, 87, 88

Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×

Human papillomavirus, 114, 116

Human T-cell lymphotrophic virus, 114, 116

I

Illiteracy,

see Literacy

Incidence rates, 60, 85

African Americans, 1, 52, 53, 60, 91, 111-113 (passim), 116-118, 142, 166, 200, 201

American Indians/Alaska Natives, 52, 61-62, 64, 65, 66-67, 113

Asians/Pacific Islanders, 1, 3, 53, 54, 60

clinical trial representation, 200, 201, 207, 208, 209-210

Hispanics, 1, 28, 44, 52, 53, 60, 116, 200, 201

methodological difficulties, 46, 77-78

minorities, general, 1, 44, 52-53, 54, 60-61, 76-77, 116, 150-151, 173, 174, 246-247, 250, 255

see also specific groups supra

NIH monitoring, 15, 150-151

NIH reporting, 8, 9, 246-247, 260

poor persons, 2, 40, 52

reporting, 8, 9, 246-247, 250, 255, 260

SEER, 9, 46, 50, 52-53, 54, 58, 255

"special populations" defined, 45

Income, 69, 109, 111-112

see also Poverty

Indian Health Service, 64, 65, 112, 113, 199

Information dissemination,

see Patient education; Professional education; Public education

Informed consent, 7, 14, 188-189, 192, 196, 198-199, 212, 229

Insurance,

see Health insurance

Intercultural Cancer Council, 29, 281

International Cancer Information Center, 107, 127

Internet, 127, 235, 294

Investigator-initiated, 94, 105, 137, 147, 181, 183, 185, 186, 234, 257

K

Kidney cancer, 61, 62, 63, 304, 311

L

Language factors, 10-11, 14, 110, 125, 164, 192, 196, 213, 216, 240-241, 284

see also Literacy

Legislation

historical perspectives, 16-17

National Cancer Act, vii, 17, 18, 93

National Cancer Institute Act, vii, 16, 18

National Health Planning Resources Act, 17

NIH Revitalization Act, 19, 25, 97-98, 177, 190, 191

Public Health Service Act, 17

Leukemia, 114, 201, 205

Life expectancy, 16

see also Survivorship and survival rates

Lifestyle risk factors,

see Behavioral risk factors

Literacy, 44, 125, 165

clinical trials, 191, 192, 199, 214

research, understanding of, 7

Liver cancer, 62, 306, 313

funding, 97, 99

hepatitis and, 12

Low-income persons,

see Poverty

Lung cancer, 57, 115, 124, 201

African Americans, 52, 53, 115, 122-123

funding, 97

historical perspective, 16, 26, 27

incidence, 52, 54, 60, 61-62, 66-67, 250

mortality rates, 27, 31, 55, 56, 63, 300, 307

PLCO Cancer Screening Trial, 115, 122-123, 137, 193, 208, 213

poor persons, 2

screening, 122-123

women, 50, 56

see also Smoking

Lymphoma, 114, 116, 124

M

Mammography, 26, 28-29, 30, 70, 75, 81, 89, 109, 111, 113, 119, 129, 164, 215, 217, 219, 254, 256, 284

poor persons, 40

Managed care, 168-169, 211

health maintenance organizations, 115, 169

Mapping by Admixture Lineage Disequilibrium, 126

Measuring the Progress Against Cancer, 31

Media campaigns, 121, 128, 222

Medicaid, 211, 217-218

Medical services,

see Access to care; Health insurance; Treatment

Medicare, 109, 115, 196, 211, 220

MEDLINE, 214

Men, 2, 64, 252

African Americans, 1, 52, 53, 58, 109, 112, 163, 188, 197-198, 203, 206, 300-313

American Indians/Alaska Natives, 62-64, 65, 66, 300-313

Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×

clinical trials, 188, 197-198, 203, 204-205, 206

statistics by race/ethnicity and cancer site, 55, 253, 300-313

see also Gender differences;

Prostate cancer

Mentored Career Development Awards, 133

Mentored Research Scientist Development Award, 133-134

Metropolitan areas,

see Urban areas

Mexican Americans, 1, 34, 38, 42, 43, 44, 49, 69, 89, 102, 108, 109, 111, 112, 164, 224, 227, 239, 247

Minority-Based Community Clinical Oncology Programs, 106, 124-125, 192, 206-207, 210

Minority Access to Research Careers Summer Research Training Program, 133

Minority Adolescent HIV Prevention and Treatment Project, 101, 102-103

Minority groups, general, 53

advisory bodies, 11, 12, 100, 103, 156, 158-159, 166, 169-173, 174, 184, 185, 186

classification of, 3, 8, 33-38, 44, 49-50, 77, 82-84, 248-249, 260

clinical trials, recruitment, 123, 124-125, 128, 192-194, 202, 206-214

costs of, 190, 191, 195, 198, 199, 211, 229

NCI efforts, 123, 124-125, 128, 192-194, 202, 206-214, 225-226, 228-229, 279

proportional representation, general, 193, 199-200

data collection and surveillance, 3-4, 35, 78, 81, 107-112

other than SEER, 58-78, 107-112

SEER, 46-69, 107-108, 109, 111-112

geographic distribution of cancers, 108-109

historical perspectives, 18-32

incidence, 1, 44, 52-53, 54, 60-61, 76-77, 116, 150-151, 173, 174, 246-247, 250, 255

journal articles on, 224-225, 226-227, 239, 240-241, 294

mortality, 1, 16, 26, 27, 28, 29, 32, 44, 52-53, 54, 55, 60-61, 76-77, 116, 150-151, 173, 174, 246-247, 250, 252-255, 296-313

NCI research review, viii, 2-3, 9-16, 23-32, 89-92, 93-97, 104-126,135-141

see also "data collection …" supra

NIH research review, other than NCI, 96-104, 141-150

poverty and, 42-44, 71-72, 123, 165

prioritizing research, 103, 154-169, 174-186

professional education, representation and recruitment, 6, 11, 19, 20, 21, 22, 101-102, 131-135, 143, 145, 146-147, 153, 159-160, 285-286

reporting, 15, 228, 246-247

smoking, 29-30, 110, 118-119

survivorship, 1-2, 4, 7-8, 9, 15, 46, 50, 51, 53, 57, 58, 65, 68-69, 72, 81-82, 104, 110, 111, 128, 130, 131, 154, 162, 167-168, 198, 234-245

see also Cultural factors;

Office of Research on Minority Health;

Special populations;

specific groups

Minority Health Initiative project, 5, 100-101, 104, 151

Minority Oncology Leadership Academic Award, 133

Mississippi Delta Project, 144

Monitoring and reporting, 228, 246-260

accountability, 8, 138

incidence, general, 8, 9, 246-247, 250, 255, 260

mortality, general, 250-255, 256, 257-258, 260

NCI role, 246, 248, 249, 257-258, 260

NIH, 8, 15, 228, 246-247, 257, 260

annual reports on research, viii, 4, 92, 138

preventive interventions, 251, 258, 260

racial/ethnic classifications, 3, 8-9, 33-38, 44, 49-50, 65, 77, 82, 83, 196, 248-249, 254, 260

treatments, 251, 255-256, 258, 260

see also Data collection and surveillance

Morbidity rates, 1, 215

cervical cancer, 208

special populations defined, 45

see also Quality of life

Mortality rates, 208

African Americans, 1, 24, 28, 29, 30, 53, 58, 69, 72-73, 91, 129, 142, 163, 166, 252, 253, 300-313

American Indians/Alaska Natives, 61, 62-64, 252-254, 300-313

Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×

Asians/Pacific Islanders, 28, 55-56, 60, 253, 296, 300-313

breast cancer, 1, 28-29, 56, 72-73, 250, 302, 308

general population, 1, 16, 28, 29, 45, 55, 58

Hispanics, 29, 44, 253, 254, 300-313

historical perspectives, 16, 26, 27, 28

methodology, 296-299

minorities, general, 1, 16, 26, 27, 28, 29, 32, 44, 52-53, 54, 55, 60-61, 76-77, 116, 150-151, 173, 174, 246-247, 250, 252-255, 296-313

NIH, 8, 15, 150-151

oral cancer, 30

poor persons, general, 2, 24, 32

poverty and, 2, 24, 32

reporting, 250-255, 256, 257-258, 260

SEER, 9, 46, 50-51, 53, 55, 58, 60-61

smoking and, 26, 28

"special populations" defined, 45

see also Life expectancy;

Survivorship and survival rates

Multiethnic/Minority Cohort Study, 112-113

Myeloma, 113, 118

N

Nasopharyngeal cancer, 63, 116, 305, 312

National Association of Central Cancer Registries, 79-80

National Black Leadership Initiative on Cancer, 18, 24, 128, 129, 160

National Cancer Act, vii, 17, 18, 93

National Cancer Advisory Board, 17, 18, 174, 194

National Cancer Institute (NCI), vii, viii, 2-3

accountability, 7, 129, 134, 138-140, 140-141, 152, 174

advisory bodies, 6, 11, 12, 100, 103, 156, 158-159, 166, 169-174, 184, 185, 186

behavioral research, 5, 6, 10, 89-90, 110-111, 115, 151-153, 176

cancer centers, 31, 105-106, 193

clinical practice guidelines, 216, 218

clinical trials, minority recruitment, 123, 124-125, 128, 192-194, 202, 206-214, 225-226, 228-229, 279

data collection and surveillance, 3-4, 35, 78, 81, 107-112, 279

see also Surveillance, Epidemiology, and End Results program

environmental exposure, 113-118, 168

extramural research, 104, 105-107, 136-137

funding, 7, 9-10, 12-13, 17, 94-97, 99, 108, 109-110, 134-142, 152

see also "prioritizing research" infra

historical perspectives, 16, 17, 19-22, 23, 27-32, 93-103

intra-agency coordination, 9-10, 97, 174

mission, 93-94, 175-177, 179

poor persons, 42, 44

preventive interventions, 24-25, 30, 93, 118-124, 126

prioritizing research, 2, 5, 12-13, 172-186, 278

professional education, 10, 19, 20, 21, 22, 93-96, 101-102, 104-105, 106, 107, 131-135, 215, 279-280

Cancer Information Service, 107, 127-128, 222-224, 238

public information and outreach, 14-15, 93, 94, 107, 127-131, 215, 283-284

reporting by, 246, 248, 249, 257-258, 260

research review, viii, 2-3, 9-16, 23-32, 89-92, 93-97, 104-126, 278

social factors, general, 5, 6, 10-11, 151-152

Special Action Committee, 12

special populations, 44-45

survivorship efforts, 15, 110, 111, 128, 130, 131, 234-235, 237-239, 243-245, 280, 293-294

see also subordinate units

National Cancer Institute Act, vii, 16, 18

National Cancer Plan, 3

National Cancer Program, 3, 17

historical highlights, 18-22

National Cancer Registrars Association, 59, 80

National Center for Health Statistics, 28, 46, 58, 60, 80, 108, 109, 250, 251-254

National Coalition of Cancer Survivorship, 233-234

National Coalition of Hispanic Health and Human Service Organizations, 130

National Comprehensive Cancer Network, 221

National Conference on the Recruitment and Retention of Minority

Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×

Participants in Clinical Cancer Research, 20

National Coordinating Council for Cancer Surveillance, 8, 80

National Health and Nutrition Examination Survey, 73-74, 110

National Health Interview Survey, 40, 74-75, 110, 233, 244-245

National Health Planning Resources Act, 17

National Heart, Lung, and Blood Institute, 148-149

National Hispanic Leadership Initiative on Cancer, 24, 128, 129-130, 160

National Human Genome Research Institute, 149-150, 153

National Institute for General Medical Sciences, 133, 135

National Institute for Occupational Safety and Health, 109

National Institute of Allergies and Infectious Diseases, 97, 117, 145-147, 148

National Institute of Arthritis and Musculoskeletal and Skin Diseases, 149

National Institute of Child Health and Human Development, 114

National Institute of Environmental Health Sciences, 97, 141-147

National Institute of Mental Health, 147

National Institute on Aging, 115, 149

National Institute on Diabetes and Digestive and Kidney Diseases, 97, 117, 147-148

National Institutes of Health (NIH)

advisory bodies, 6, 11, 12, 100, 103, 156, 158-159, 166, 169-174, 184, 185, 186

agency coordination, 5, 6, 8, 9-10, 97-98, 100, 103, 130, 151, 174

clinical trials, policy, 187, 190-191, 211, 279

environmental risk factors, 168

funding, 10, 94-103, 137, 140-142, 145, 146, 148-149, 151, 211, 246-247

historical perspective, 18-23

mission, 175-177, 179

peer review, 105, 147, 157-159

prioritizing research, 103, 154-169, 174-186, 278, 286-287

professional training, 11, 132, 153, 159-160, 279-280

reporting, 8, 15, 228, 246-247, 257, 260

annual reports on research, viii, 4, 92, 138

research review, viii, 2-3, 9-16, 93-153, 278-279

special populations defined, 44-45, 162

survivorship policy, 104, 154, 162, 230-231, 236, 239-244, 293-294

see also National Cancer Institute;

other specific agencies

National Institutes of Health Revitalization Act, 19, 25, 97-98, 177, 190, 191

National Medical Expenditure Survey, 75

National Panel of Consultants on the Conquest of Cancer, 17

National Program of Cancer Registries, 79

National Survey of Family Growth, 75-76

Native Americans,

see American Indians/Alaska Natives

Natural remedies, 28, 233

Network for Cancer Control Research, 19, 130-131

North American Association of Central Cancer Registries, 4, 59, 79, 92

Nutrition,

see Diet and nutrition

O

Office of Cancer Communications, 127, 129

Office of Cancer Information, Communication, and Education, 107, 127, 128, 243

Office of Cancer Survivorship, 234, 243, 293

Office of Management and Budget, 3

data collection, racial groups defined, 8-9, 33-34, 36-37, 82, 248-249

Office of Protection from Research Risks, 19, 192

Office of Research on Minority Health (ORMH), 97-104, 117, 125, 147, 151, 192

funding, 98, 100, 101-103, 150

historical perspectives, 19-20, 97-98

research prioritizing, 169-170

research recommendations, 5, 12-13, 103-104

Office of Research on Women's Health, 19, 193, 194

Office of Special Populations Research, 6, 13, 132, 153, 169, 170, 174, 184, 186

Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×

Oral cancer, 26, 30, 116-117

Ovarian cancer, 62, 97, 115, 122, 124, 193, 206, 237, 301, 309

PLCO Cancer Screening Trial, 115, 122-123, 137, 193, 208, 213

P

Pacific Islanders,

see Asians/Pacific Islanders

Pain and pain management, 179, 180, 230, 231, 232, 236

Pancreatic cancer, 113, 118, 301, 309

African Americans, 118, 301, 309

Pap smears, 30, 40, 50, 70, 73, 75, 76, 89, 115, 123, 129, 164, 167, 208, 219, 254, 256

Partnerships for Communication, 142-143

Patient education, 128, 191-193, 217, 221-222, 233-234

informed consent, 7, 14, 188-189, 192, 196, 198-199, 212, 229

PDQ, 127, 128, 225

Peer review, 105, 147, 157-159

Percent relevancy accounting, 10, 129, 139, 140-141, 152

Pesticides, 113, 117, 143-144

Pharyngeal cancer, 26, 63

Political factors

clinical trials, 213

data collection categories, 3, 8, 82

Poverty, 2, 39-44, 69-70, 91, 163

African Americans, 43, 49, 71-72, 91, 123

American Indians, 43, 71-72

Asians/Pacific Islanders, 43, 71-72

clinical trials, 112, 124, 189, 195, 211, 214

diet, 120

environmental exposure, 142-143, 168

Hispanics, 42, 43, 71-72

insurance, other than Medicaid, 2, 218

Medicaid, 211, 217-218

"medically underserved persons" defined, 9, 39, 44

minority status and, 42-44, 71-72, 123, 165

mortality, general, 2, 24, 32

preventive interventions, 40, 142

prioritizing research, 163, 165, 176

public education, 40, 225

rural areas, 43, 60

SEER, 9, 40, 49, 52, 78-79

smoking and, 119-120

by state, 71-72

treatment of poor persons, 40, 41-42

uninsured/underinsured persons, 2, 9, 39, 41, 44, 189

white persons, 43, 79

President's Cancer Panel, 17

President's Commission on Heart Disease, Cancer, and Stroke, 17

Preventive interventions, 50, 70, 81, 84-85, 93, 118-123, 127, 142

African Americans, 18, 118-119, 136, 142, 207-211 (passim)

American Indians, 61, 111, 119, 121, 130-131, 142, 208-209

Asians/Pacific Islanders, 120, 121

breast cancer, 14, 30, 122, 208, 210

clinical trials, 7, 14, 206, 207-211

funding, 94-95, 99, 102

Hispanics, 118-120, 121, 128, 136, 142, 208-210 (passim)

historical perspectives, 18, 24-25, 26-27

NCI role, 24-25, 30, 93, 118-124, 126

poor persons, 40, 142

reporting on, 251, 258, 260

SEER, 50, 51

smoking, 118-120, 161, 197, 254

see also Public education;

Risk factors;

Screening

Preventive Services Task Force, 216

Professional education, 6, 214-229

clinical practice guidelines, 214, 216, 217-222, 224, 228, 233-234

clinical trials, 213-214

community-based providers, 31, 187, 197, 198, 217-219

databases, 127, 128, 191, 214, 225

environmental exposures, 143

funding, 6, 10, 19, 20, 21, 94-96, 101-102, 106, 131-134, 146-147

historical perspective, 16, 19, 20, 21, 22, 93-94

journals, 219, 224-225, 226-227, 235, 238-239, 240-241

minority representation, 6, 11, 19, 20, 21, 22, 101-102, 131-135, 143, 145, 146-147, 153, 159-160, 285-286

NCI efforts, 10, 19, 20, 21, 22, 93-96, 101-102, 104-105, 106, 107, 131-135, 215, 279-280

Cancer Information Service, 107, 127-128, 222-224, 238

NIH efforts, not NCI, 11, 132, 153, 159-160, 279-280

regional medical programs, 17

SEER, 47

Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×

Projections

Healthy People 2000, 29-30, 31, 254

mortality, 1, 29

Prostate cancer, 28, 52, 53, 55, 61, 62, 66, 69, 109, 112-113, 115, 122, 124, 222, 250, 305, 312

African Americans, 53, 69, 109, 111-113, 115, 122, 197-198, 201, 224, 305, 312

clinical trials, 115, 122-123, 137, 183, 193, 201, 208, 209-210, 213

finasteride, 122, 208

funding, 97, 99, 102

Prostate Cancer Clinical Trial, 122, 183

Prostate Cancer Outcomes Study, 111-112

Prostate Cancer Prevention Trial, 193, 208, 209-210

Prostate, Lung, Colon, and Ovarian (PLCO) Cancer Screening Trial, 115, 122-123, 137, 193, 208, 213

Public education, 2-3, 7, 13, 14-15, 93, 94, 107, 127-131, 141-142, 214, 228

African Americans, 18, 128, 129, 142

American Indians, 121, 128, 129, 130-131, 216, 284

Cancer Information Service, 107, 127-128, 222-224, 238

clinical trials, outreach, 191-193

cultural factors, 128, 167, 284

evaluation of, 14-15, 166-167

Hispanics, 14, 20, 127-130, 136

historical perspectives, 16, 20, 27

media campaigns, 121, 128, 222

NCI role, 14-15, 93, 94, 107, 127-131, 215, 283-284

poor persons, 40, 225

survivors of cancer, 15, 167, 238, 240-245

telephone services, 107, 119, 122, 127-128, 222-224, 238

see also Patient education

Public Health Service Act, 17

Puerto Ricans, 47, 49, 74

Q

Quality of life, 26, 27, 46, 111-112, 173, 198, 230, 231, 232-233, 235, 236, 244, 255, 256, 258

see also Morbidity rates

R

Race/ethnicity,

see Minority groups

Racial/Ethnic Patterns of Cancer in the United States, 1988-1992, 248, 255

Regional factors, 17, 35, 47, 49, 78-79, 108-109

American Indians, 64, 65

Appalachia, 2, 9, 20, 24, 48, 52, 53, 61, 78, 128, 130, 155, 160, 165, 281

clinical trials, 204-206

smoking, 19

see also Rural areas;

Urban areas

Registries,

see Cancer registries

Religious factors, 35, 83, 121, 195-198 (passim), 213, 216, 230, 233

quality of life, 233

Reporting,

see Monitoring and reporting

Research, past and present, viii, 17, 226-229

advisory bodies, 11, 12, 100, 103, 156, 158-159, 166, 169-174, 184, 185, 186

case-control studies, 109, 115, 116, 117, 118

cultural factors, individual researchers' understanding of, 7, 10-11, 89-90, 194-199

dissemination of, 2-3, 13, 17, 24, 27, 107, 129, 187, 214-229

see also Patient education;

Professional education;

Public education

environmental exposure, general, 4, 143, 113-118, 144, 165, 168

funding, general, 7, 9-10, 12-13, 17, 94-95, 134-142, 145, 146, 148-149, 161

historical summary, 18-32

investigator-initiated, 94, 105, 137, 147, 181, 183, 185, 186, 234, 257

minority involvement, 20, 106, 133-139, 146-148, 149, 150, 153, 161-162, 169-174, 186, 194, 198, 257, 260

African-American educational institutions, 135-136, 149, 153, 164, 165-166, 286, 288

African Americans, 132, 134, 145, 156, 166, 172

American Indians, 131, 132, 134, 156, 172

Asians/Pacific Islanders, 131, 132, 156, 171, 172

Hispanics, 132, 134, 147, 162

NCI review, viii, 2-3, 9-16, 23-32, 89-92, 93-97, 104-126, 278

NIH review, not NCI, viii, 2-3, 9-16, 93-153, 278-279

Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×

peer review, 105, 147, 157-159

prioritizing, 103, 154-169, 174-186, 286-287

report at hand, methodology, vii-viii, 2-3, 155-157, 236, 238-239, 246, 277-281, 289-292, 296-299

risk factors, general, 84-91

survivorship, general, 2, 21, 110, 236

see also Clinical trials;

Data collection and surveillance;

Statistical analyses

Research Centers in Minority Institutions, 146

Research Enhancement Awards Program, 12, 103, 151

Research recommendations, 4-8, 79, 80, 82, 91-92, 140, 151-153, 260, 282

accounting, 140

advisory bodies, 172-174

behavioral factors, 4, 91

clinical trials, 211-214

cultural factors, 4, 83-84, 91

evaluation of research, 5, 6, 7, 10

minority professionals involved in research, 6, 11, 161-162, 166, 198, 260, 285-288

patient understanding/consent, 7, 212, 229

prioritizing research, 2, 5, 12-13, 165-169, 172-186

reporting of results, 260

SEER, 4, 79-80, 91

''special population" defined, 91

Research Supplements for Under-represented Minorities, 146

Risk factors, general, 3, 4-5, 10, 27, 70, 78

occupational, 24, 47, 69, 109, 114

SEER, 47

see also Behavioral risk factors;

Environmental exposure;

Genetic factors;

Screening

Rural areas, 9, 39, 114, 136, 144

African Americans, 9, 48-49, 53, 78, 113, 143-144

agricultural workers, 114, 117, 143-144

Appalachia, 2, 9, 20, 24, 48, 52, 53, 61, 78, 128, 130, 155, 160, 165

brownfields, 144

cervical cancer, 53

clinical trials, 7, 124, 188, 214, 229

diagnosis and treatment, 115

poverty in, 43, 60, 115

prioritization of research, 155, 160, 163, 165, 171

SEER, 9, 48-49, 60, 78

S

Sampling, 14, 34, 49, 74, 77, 139, 155-156, 197, 205, 206, 216, 234

see also "minority group recruitment" under "Clinical trials"

Science Enrichment Program, 132-133

Screening, 25-26, 28-29, 68, 69, 70, 72-75, 81, 85, 109, 110, 122-126, 128, 219, 242, 251, 282

clinical practice guidelines, 217-218, 219

followup services, 167

PLCO Cancer Screening Trial, 115, 122-123, 137, 193, 208, 213

rural areas, 115

see also Mammography;

Pap smears;

Risk factors

SEER,

see Surveillance, Epidemiology, and End Results program

Setting Research Priorities at the National Institutes of Health, 179

Small business grants, 136

Smoking, 70, 110, 116, 118, 161

African Americans, 29-30, 118-119, 120

American Indians, 29-30, 119

Asians/Pacific Islanders, 30, 120, 197

Hispanics, 29-30, 119

historical perspectives, 18, 23, 26, 27, 28, 29-30, 31

minorities, general, 29-30, 110, 118-119

mortality and, 26, 28

poverty and, 119-120

preventive interventions, 118-120, 161, 197, 254

secondhand, 26

women, 50

Social factors, 42

data collection categories, 3, 8, 82

environmental justice, 142-143

NCI program, 5, 6, 10-11, 151-152

SEER, 46, 47, 79

survivorship, 231, 243

see also Cultural factors;

Families of cancer patients

Socioeconomic status, 39-44, 69-70, 85, 109, 111, 114, 176

clinical trial participants, 190, 229

medically underserved defined, 39

see also Educational attainment;

Income;

Poverty

Southwest Oncology Group, 205, 206

Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×

Special populations, general

definition of, 4, 44-45, 80, 91, 162, 287

funding, 109-110, 136

historical perspectives, 21-22, 24, 27

NIH receptivity to research, 159, 166

Office of Special Populations Research, 6, 13, 132, 153, 169, 170, 174, 184, 186

research prioritization, 12, 21-22, 154-155, 174-185, 186

SEER, 46, 78-80

see also Elderly persons;

Minority groups;

Poverty;

Rural areas

State government role

Behavioral Risk Factor Surveillance Survey, 73

clinical practice guidelines, 214, 216, 217-221, 224, 228, 233-234

tumor registries, 4, 58-60, 64, 68, 79-80, 81

Statistical analyses, 29, 248-249

classification of minority groups, 3, 8-9, 33-38, 44, 49-50, 65, 77, 82, 83, 196, 248-249, 254, 260

clinical trial data, 221

data collection standards, general, 79

genetic factors, 86-88

sampling, 14, 34, 49, 74, 77, 139, 155-156, 197, 205, 206, 216, 234

see also "minority group recruitment" under "Clinical trials"

"special populations" defined, 4, 44-45, 80, 91, 162, 287

Stomach cancer, 52, 53, 54-56, 63, 66-67, 109, 117, 303, 310

Surgeon General of the U.S., 16, 18

Surveillance,

see Data collection and surveillance

Surveillance, Epidemiology, and End Results (SEER) program, 4, 9, 46-69, 78-80, 82, 91-92, 107-108, 109

African Americans, 9, 24, 47, 48-49, 53, 58, 59, 60, 78, 82, 108, 111-112, 206, 210

American Indians/Alaska Natives, 9, 49, 52, 61-64, 65, 79, 107-108, 201

Asians/Pacific Islanders, 49, 53, 60, 79, 107, 201

classification of minority groups, 49-50, 248

clinical trials, minority representation, 199-200, 201, 205, 206

data collection methods, 111-112, 129, 142, 244

geographic scope, 47-48, 107, 108

goals, 46-47

Hispanics, 9, 47, 48, 49, 50, 52, 60, 78-79, 107, 108, 111-112, 206, 210

historical perspectives, 18, 19, 24, 31

incidence, 9, 46, 50, 52-53, 54, 58, 255

"medically underserved" persons, defined, 9

mortality, 9, 46, 50-51, 53, 55, 58, 60-61

NIH monitoring, 15

poor persons, 9, 40, 49, 52, 78-79

preventive interventions, 50, 51

research recommendations, 4, 79-80, 91

rural areas, 9, 48-49, 60, 78

social factors, 46, 47, 79

special populations, general, 46, 78-80

state registries and, 4, 59-60, 64, 68, 79-80

survivorship, 9, 46, 50, 51, 53, 57, 58, 65-66, 82, 255

urban areas, 47, 49, 107, 108

Surveillance Implementation Review Group, 78, 81

Survivorship and survival rates, 2, 15, 21, 58, 110, 111, 136, 167-168, 230-245

African Americans, 57, 59, 82, 91, 111, 129, 142

American Indians/Alaska Natives, 2, 61, 68, 88

Asians/Pacific Islanders, 57, 111

breast cancer, 231, 234, 240

children, 211

clinical practice guidelines, 233-234

clinical trials, recruitment, 196, 197-198

cultural factors, 168, 233, 240-242

defined, 231

fatalism, 14-15, 164, 196, 197-198, 240, 243

Hispanics, 57, 68, 240-241

minorities, general, 1-2, 4, 7-8, 9, 15, 46, 50, 51, 53, 57, 58, 65, 68-69, 72, 81-82, 104, 110, 111, 128, 130, 131, 154, 162, 167-168, 198, 234-245

National Coalition of Cancer Survivorship, 233-234

NCI role, 15, 110, 111, 128, 130, 131, 234-235, 237-239, 243-245, 280, 293-294

Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×

NIH role, not NCI, 104, 154, 162, 230-231, 236, 239-244, 293-294

pain and pain management, 179, 180, 230, 231, 232, 236

prioritizing research, survivor involvement, 154, 162-169, 171

public education, 15, 167, 238, 240-245

quality of life, 26, 27, 46, 111-112, 173, 198, 230, 231, 232-233, 235, 236, 244, 255, 256, 258

recommendations, 7-8, 171, 242-245

reporting, 255-256

SEER, 9, 46, 50, 51, 53, 57, 58, 65-66, 82, 255

social factors, general, 231, 243

"special populations" defined, 45

see also Families of cancer patients;

Morbidity rates;

Mortality rates

T

Tamoxifen, 14, 30, 122, 208, 210

Telephone services, 107, 119, 122, 127, 223, 238

Cancer Information Service, 107, 127-128, 222-224, 238

Tobacco,

see Smoking

Training,

see Patient education; Professional education; Public education

Treatment, 69-70, 81, 93, 126, 212, 231, 242

AIDS-related cancers, 103, 146

American Indians, 61

chemotherapy, 14, 30, 122, 196, 207-208, 210

clinical practice guidelines, 217, 218

databases, 127

historical perspectives, 26, 27

informed consent, 7, 14, 188-189, 192, 196, 198-199, 212, 229

natural remedies, 28, 233

poor persons, 40, 41-42

reporting on, 251, 255-256, 258, 260

reproductive and fertility problems, 236

rural areas, 43, 60, 115

SEER, 46

see also Chemotherapy;

Clinical trials;

Health insurance

U

Urban areas, 39, 74, 120, 171, 218

African Americans, 49, 119, 129

American Indians, 64

brownfields, 144

clinical trials, recruitment and retention, 7, 189, 197-198, 207, 229

SEER, 47, 49, 107, 108

V

Veterans,

see Department of Veterans Affairs

Vietnamese, 30, 123

W

What Are Clinical Trials All About?, 192

Women, 19, 20, 25, 54, 56, 75, 109, 123, 204, 252, 253, 300-313

African Americans, 1, 14, 28, 30, 69, 112, 115, 116, 123, 126, 128-129, 163-164, 165, 201, 204, 205, 206, 210, 215, 250, 300-313

American Indians/Alaska Natives, 62-63, 64, 67, 75, 204, 205, 300-313

Asians/Pacific Islanders, 1, 28, 75-76, 116, 129, 164

clinical trials, 19, 112, 177, 178, 190, 191, 199, 200, 203, 204-205, 210

Hispanics, 75, 89, 210, 300-313

Office of Research on Women's Health, 19, 193, 194

reproductive and fertility problems, 236

survivorship, 231, 234, 236

see also Breast cancer;

Cervical and uterine cancer;

Gender differences;

Ovarian cancer

Women's Health Initiative, 26, 148-149

Women's Health Trial: Feasibility Study in Minority Populations, 112

Y

Yarborough Commission, 17

Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×
Page 323
Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×
Page 324
Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×
Page 325
Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×
Page 326
Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×
Page 327
Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×
Page 328
Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×
Page 329
Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×
Page 330
Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×
Page 331
Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×
Page 332
Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×
Page 333
Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×
Page 334
Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×
Page 335
Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×
Page 336
Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×
Page 337
Suggested Citation:"Index." Institute of Medicine. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press. doi: 10.17226/6377.
×
Page 338
The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved Get This Book
×
Buy Paperback | $68.00 Buy Ebook | $54.99
MyNAP members save 10% online.
Login or Register to save!
Download Free PDF

We know more about cancer prevention, detection, and treatment than ever before--yet not all segments of the U.S. population have benefited to the fullest extent possible from these advances. Some ethnic minorities experience more cancer than the majority population, and poor people--no matter what their ethnicity--often lack access to adequate cancer care. This book provides an authoritative view of cancer as it is experienced by ethnic minorities and the medically underserved. It offers conclusions and recommendations in these areas:

  • Defining and understanding special populations, and improving the collection of cancer-related data.
  • Setting appropriate priorities for and increasing the effectiveness of specific National Institutes of Health (NIH) research programs, to ensure that special populations are represented in clinical trials.
  • Disseminating research results to health professionals serving these populations, with sensitivity to the issues of cancer survivorship.

The book provides background data on the nation's struggle against cancer, activities and expenditures of the NIH, and other relevant topics.

  1. ×

    Welcome to OpenBook!

    You're looking at OpenBook, NAP.edu's online reading room since 1999. Based on feedback from you, our users, we've made some improvements that make it easier than ever to read thousands of publications on our website.

    Do you want to take a quick tour of the OpenBook's features?

    No Thanks Take a Tour »
  2. ×

    Show this book's table of contents, where you can jump to any chapter by name.

    « Back Next »
  3. ×

    ...or use these buttons to go back to the previous chapter or skip to the next one.

    « Back Next »
  4. ×

    Jump up to the previous page or down to the next one. Also, you can type in a page number and press Enter to go directly to that page in the book.

    « Back Next »
  5. ×

    Switch between the Original Pages, where you can read the report as it appeared in print, and Text Pages for the web version, where you can highlight and search the text.

    « Back Next »
  6. ×

    To search the entire text of this book, type in your search term here and press Enter.

    « Back Next »
  7. ×

    Share a link to this book page on your preferred social network or via email.

    « Back Next »
  8. ×

    View our suggested citation for this chapter.

    « Back Next »
  9. ×

    Ready to take your reading offline? Click here to buy this book in print or download it as a free PDF, if available.

    « Back Next »
Stay Connected!