Index
A
Access to care, 8, 9, 67, 109, 110, 120–122
patient attitudes and, 48, 121
Accreditation of health care organizations, 5–6, 27, 68–69, 84, 116, 125–126
Accreditation of insurance organizations, 5–6, 27, 48, 68–69, 84, 116, 125–126
National Committee for Quality Assurance (NCQA), 5, 48, 66–68, 83–84, 85, 86, 116
Accreditation of providers, 23, 27, 67, 116, 125–126
Accountability, 1, 8, 9, 11, 18, 25, 66, 73, 86, 94, 110, 111, 115, 125–126
Foundation for Accountability (FACCT), 26, 36, 83, 85
Achievable Benchmarks of Care, 63
Adaptability, see Technological innovations (adaptability)
breast cancer, 19, 25, 33, 81, 112, 133, 136
see also Chemotherapy; Radiation therapy
Age factors, 33, 65, 132–134 (passim),
see also Elderly persons
Agency for Healthcare Research and Quality (AHRQ), 6, 7, 34, 44, 45, 48, 49, 71, 84–85, 89, 90, 91, 92, 117, 126
Aggregate quality scores, 3, 12, 16, 17, 30, 46, 69, 71, 78
AIDS Cost and Services Utilization Study, 43
Ambulatory care, 3, 5, 6, 34, 43, 65, 85, 88, 89, 118, 119, 142–143
American Association of Family Physicians, 85
American Cancer Society (ACS), 41–42, 44, 58, 126
see also National Cancer Data Base
American College of Physicians, 85
American College of Radiology, 20, 23–24
American College of Surgeons' Commission on Cancer, 4, 31, 33, 116, 126
see also National Cancer Data Base
American Diabetes Association, 85
American Indians, 59
American Medical Association, 66
American Society of Clinical Oncology (ASCO), 22, 49, 83, 91
Attitudes and beliefs
patient satisfaction, see Patient satisfaction
providers, general, 13, 29, 110
providers, toward elderly, 121–122
B
Benchmarks, 3, 6, 9, 12, 16, 46, 48, 55, 63, 66, 75, 76, 78, 80, 81, 88, 90, 125
Biopsies, 25, 30, 47, 70, 112, 137
Black persons, see African Americans
Breast cancer, 12, 19, 41, 42, 63, 70, 92, 112, 120, 132–140
adjuvant therapies, 19, 25, 33, 81, 112, 133, 136
case studies, 19, 20, 21, 25–36 (passim),
diagnosis, not mammography, 12, 28, 30, 47, 50, 70, 112, 132–140
mammography, 28, 21, 43, 47, 51, 62–63, 66, 111, 112, 137
patient satisfaction, 25, 29, 51
quality-of-care measures, 47, 49, 50–51, 83
radiation therapy, 25, 26, 27, 28, 31, 33, 47, 89, 112, 133, 134, 136, 139
surgery, 25, 26, 28, 30–31, 43, 44, 47, 50, 70, 81, 89, 112, 113, 132–140
survival rates and durations, 21, 26, 29, 139, 140
treatment, 12, 20, 39, 50, 79, 132, 133, 134;
see also“radiation therapy” and “surgery” supra
C
Cancer Registries Amendment Act, 57, 72
Cancer Research Network, 42–43, 126
Case-control studies, 13
Case studies, 10, 18–36, 79, 80
breast cancer, 19, 20, 21, 25–36 (passim),
chemotherapy, 21, 22, 25, 26, 33
clinical practice guidelines, 19, 20, 21, 22, 23, 27, 30, 34–35, 79
colorectal cancer, 20, 24, 27, 31, 32–33
computer-based patient records, 19, 20, 22, 30, 79
diagnosis, 20, 21, 25, 28, 30, 34, 79
end-of-life care, 20, 21, 36, 79
health insurance, 20, 26–27, 28, 30–31, 33, 34, 55, 79
hospitals and hospitalization, 21, 25, 33, 79
medical charts and records, 20, 23, 26, 28, 32–33, 34
outcome measures, 22, 23, 25, 26, 27
patient satisfaction, 21, 25, 26, 29, 34
performance standards, 22, 27, 28–29, 36
privacy and confidentiality, 27, 32–33
quality-of-care measures, 21, 24–26, 34, 36, 79
radiation therapy, 23–24, 24, 25, 26, 27, 28, 31, 33
stages of cancer, 19, 25, 26–27, 28, 33, 34
treatment, general, 20, 21, 27, 79
Centers for Disease Control and Prevention (CDC), 4, 6, 85, 87, 89, 90, 121
see also National Program of Cancer Registries
Cervical and uterine cancer, 24, 41, 42, 49, 63, 85, 121
Cervical Cancer Early Detection Program, 121
Charts, see Medical charts and records
Chemotherapy, 5, 12, 40, 41, 47, 48, 50, 81, 85, 112, 113, 134
case studies, 21, 22, 25, 26, 33
registries, 58
Clinical trials, 12, 13, 41, 43, 47, 81, 111, 116, 117
Colorectal cancer, 39, 40, 47, 49, 70, 92
adjuvant therapies, 32, 33, 47, 79
case studies, 20, 24, 27, 31, 32–33
see also Internet
Comorbidity, 3, 6, 9, 40, 45, 48, 119
registries, 58, 92, 135, 136, 140
reporting standardized, 6, 12, 14, 19, 54–55, 77, 84, 85–86, 87, 90
secondary (metastatic) cancer, 12, 53, 117
Computer-based patient records, 2, 3, 4, 6, 10, 12, 13–14, 38, 52–53, 75, 77, 80–81, 90, 93
case studies, 19, 20, 22, 30, 79
privacy and confidentiality, 4, 71, 73, 81, 93
Confidentiality, see Privacy and confidentiality
Consent, see Informed consent
Consumer Assessment of Health Plans Survey, 34
Cost factors, see Economic factors
Cross-sectional studies, 3, 12, 42, 46, 77
D
Demographic factors, 11, 33, 40, 57, 58, 59, 60, 118, 119, 120, 121
see also Age factors;
Elderly persons;
Geographic factors;
Population-based studies;
Race/ethnicity
Demonstration projects, 6, 7, 94
see also Case studies
Department of Health and Human Services, 5–6, 43, 49, 73, 74, 84, 86, 93
see also Agency for Healthcare Research and Quality;
Centers for Disease Control and Prevention;
Food and Drug Administration;
Health Care Financing Administration;
National Center for Health Statistics;
National Institutes of Health
Department of Veterans Affairs, 6, 7, 38, 84–85, 90, 92
Diagnosis, 4–5, 8, 9, 12, 39, 70, 92, 110, 114–115, 121
biopsies, 25, 30, 47, 70, 112, 137
breast cancer, 12, 28, 30, 47, 50, 70, 112, 132–140;
see also Mammography
case studies, 20, 21, 25, 28, 30, 34, 79
cervical cancer, 121
recently diagnosed patients, 1–2, 9, 15, 31, 42, 46, 76, 118, 119, 135
registry data, 37–38, 40, 41, 42, 45, 92, 132–137
see also Stage of cancer
Drug treatment, see Chemotherapy; Medication
E
Economic factors, 2, 43, 52, 115
costs of assessment, 19, 31, 59, 75, 80, 119, 127
costs of care, 19, 21, 25, 38, 39, 44, 116, 120, 126, 134
socioeconomic status, 15
see also Funding;
Health Care Financing Administration;
Health insurance
Educational attainment, 121
Education and training
patient, 49, 69, 71, 112, 116, 117
professional, 1, 22, 23, 52, 59,67, 90, 94, 110, 119
Elderly persons, 39, 69, 92, 111, 115, 120, 121–122, 125, 132, 135, 136, 139
Medicare, 32–33, 38, 39, 40, 43, 58, 69, 75, 87,91, 93, 115, 118, 120, 125, 133, 135
Electronic Communications Privacy Act, 73
Electronic patient records, see Computer-based patient records
Employer-based health insurance, 31, 34, 66, 71, 115
End-of-life care, 8, 12, 39, 44, 51, 80, 117
Ensuring Quality Cancer Care, 1, 8–10, 48, 71, 76, 83, 91, 109
Ethnicity, see Race/ethnicity
Expert opinion, 13, 22, 23, 43, 81, 85, 90
peer review organizations (PROs), 27, 32, 69, 92, 125
F
Federal government, 2, 6–7, 18, 43–44, 45, 49, 86, 89, 90–91, 94
clinical trials, 117
national data systems, 2, 11, 14–16, 77, 86–88, 94, 111, 119
privacy and confidentiality, 72, 74, 93
see also Department of Health and Human Services; Department of Veterans Affairs; Funding; Legislation
Fee-for-service plans, 33, 37, 38, 39, 40, 119
Females, see Breast cancer; Cervical and uterine cancer; Gender factors
Food and Drug Administration, 6, 90
Foundation for Accountability (FACCT), 26, 36, 83, 85
Freedom of Information Act, 72
Funding, 6–7, 18, 37, 43, 89, 119
education and training, 23, 90, 119
National Program of Cancer Registries, 6, 7, 57, 61, 87, 88, 92–93
peer review organizations, 92
registries, 42, 57, 59, 88, 89
G
Gender factors, 33, 65, 132, 146
see also Breast cancer; Cervical and uterine cancer; Prostate cancer
Geographic factors, 9, 11, 15, 16, 46, 57, 59, 61, 65, 66, 77, 81, 82, 93, 115, 125, 135, 146
H
Healthcare Cost and Utilization Project, 44, 45
Health Care Financing Administration (HCFA), 6, 7, 63, 84–85, 88, 89, 92, 115, 125
see also Medicaid; Medicare
Health insurance, 5, 9, 55, 69, 71, 77, 84, 86, 93, 117, 120
accreditation, 5–6, 27, 48, 68–69, 84, 116, 125–126
case studies, 20, 26–27, 28, 30–31, 33, 34, 55, 79
computer-based patient records, 53
fee-for-service plans, 33, 37, 38, 39, 40, 119
registries, linkage to, 37–38, 40–42, 45, 57–65(passim),
uninsured and underinsured persons, 11, 15, 120, 139
see also Employer-based health insurance; Managed care; Medicaid; Medicare
Health Insurance Portability and Accountability Act, 73, 74, 93
Health maintenance organizations, 33, 37, 38, 39, 42–43, 67, 68, 126
HEDIS (Health Plan Employer Data Information Set), 48, 66–68, 89
Hospice care, see End-of-life care
Hospitals and hospitalization, 38, 44, 69, 125, 126
hospital-based data retrieval, 3, 5, 6, 89, 92, 133, 134, 138, 139, 140
registries, 20, 25, 34, 38, 56(n.5), 58, 60, 61, 65, 78, 79, 133, 134, 138, 139, 140
pain control, 21
see also Medical charts and records
I
Independent Health Association, 30
Insurance, see Health insurance
International Association of Cancer Registries, 62
Agency for Health Research and Quality (AHRQ), 85
computer-based patient records, 53
Healthcare Cost and Utilization Project, 44
HEDIS, 67
Joint Commission for the Accreditation of Healthcare Organizations , 68
National Center for Health Statistics, 44
National Forum for Health Care Quality Measurement and Reporting, 52
Quality Compass, 68
Quality Interagency Coordination Task Force, 49
SEER, 93
J
Joint Commission for the Accreditation of Healthcare Organizations (JCAHO), 5–6, 33(n.1),
L
Legal issues, 124
malpractice, 137
see also Privacy and confidentiality
Legislation
Cancer Registries Amendment Act, 57, 72
Electronic Communications Privacy Act, 73
Freedom of Information Act, 72
Health Insurance Portability and Accountability Act, 73, 74, 93
Privacy Act, 72
Linkage studies, 7, 37–39, 40–42, 45, 57–65 (passim),
Health Care Financing Administration (HCFA), 7, 38, 57
health insurance, 37–38, 40–42, 45, 57-65 (passim),
National Cancer Institute, 7, 34, 37–39
SEER, 7, 38–39, 41, 4–5, 57, 62–63, 87, 91, 92–93, 118
Local systems of care, 12, 16, 42, 46, 66–75, 92, 125
case studies, 20–22
see also Health insurance; Hospitals and hospitalization; Provider groups
Lung cancer, 21, 39, 44, 47, 49, 70, 81, 85, 120, 135
M
Males, see Gender factors; Prostate cancer
Malpractice, 137
Mammography, 28, 21, 43, 47, 51, 62–63, 66, 111, 112, 137
Managed care, 40, 42–43, 45, 48–49, 68, 80–81, 119, 126
benchmarks, 9
geographic variation, 15
National Committee for Quality Assurance (NCQA), 5, 48, 66–68, 83–84, 85, 86, 116
see also Health insurance; Health maintenance organizations
Medical charts and records, 3, 5, 12, 40, 54–55, 78, 79, 80, 92, 112
case studies, 20, 23, 26, 28, 32–33, 34
see also Computer-based patient records; Privacy and confidentiality
Medical Expenditure Panel Survey, 43
Medicare, 32–33, 38, 39, 40, 43, 58, 69, 75, 87, 91, 93, 115, 118, 120, 125, 133, 135
Medication, 19, 23, 27, 40, 43, 63, 113, 120, 132, 133, 138, 140
see also Chemotherapy; Pain and pain control (palliative care)
MEDSTAT, 69
Men, see Gender factors; Prostate cancer
Minority groups, see Race/ethnicity
see also Case studies; Demonstration projects
N
National Ambulatory Medical Care Survey, 43
National Cancer Data Base (NCDB), 4, 6, 31, 55, 59–62 (passim),
National Cancer Institute (NCI), 23, 42, 45, 48, 71, 75, 83, 84, 87, 89, 91, 117
demonstration projects, 7
registries, general, 4, 38, 39, 40, 41, 92
;see also Surveillance, Epidemiology, and End Results (SEER) program
National Center for Health Statistics, 44, 59, 126
National Committee for Quality Assurance (NCQA), 5, 48, 66–68, 83–84, 85, 86, 116
National Comprehensive Cancer Network (NCCN), 26, 27, 30, 35, 81, 84
National Coordinating Council for Cancer Surveillance, 62
National Death Index, 57
National Forum for Health Care Quality Measurement and Reporting, 49, 52, 86
National Health Interview Survey, 43
National Home and Hospice Care Survey, 44
National Hospital Discharge Survey, 44
National Institutes of Health, 6, 90
see also National Cancer Institute
National Mortality Followback Survey, 44
National Program of Cancer Registries (NPCR), 4, 39, 55, 56-64(passim),
funding, 6, 7, 57, 61, 87, 88, 92–93
Nationwide Inpatient Sample, 44
Native Americans, see American Indians
North American Association of Central Cancer Registries, 56, 62, 146–147
O
Organizational factors, 1, 15, 112, 127
accreditation of health care organizations, 5–6, 27, 33(n.1), 68–69, 84, 116, 125–126
provider practice management, 19, 22, 34, 79, 80
research consortiums, 37, 42–43, 45, 93, 114
Outcome measures, 2, 12, 14, 41, 44, 47, 48, 110, 112, 118, 119, 121
case studies, 22, 23, 25, 26, 27
computer-based patient records, 46
see also Quality of life; Survival rates and durations
Outpatient care, see Ambulatory care
P
Pain and pain control (palliative care), 2, 8, 12, 16, 44, 50, 51, 80, 110, 117
see also End-of-life care
Patient attitudes and beliefs, general, 48, 121
see also Patient satisfaction
Patient education, 49, 69, 71, 112, 116, 117
educational attainment of patients, 121
Patient records, see Computer-based patient records; Medical charts and records
Patient satisfaction, 13, 40–41, 67, 71, 80, 110, 115–116, 119
breast cancer patients, 25, 29, 51
case studies, 21, 25, 26, 29, 34
end-of-life care, 21
see also Quality of life
Patterns of care studies, 23–24, 81
Peer review organizations (PROs), 27, 32, 69, 92, 125
Performance standards, 1, 6, 48, 69, 78, 80, 85, 86, 94, 135
case studies, 22, 27, 28–29, 36
see also Benchmarks; Outcome measures
Pharmaceuticals, see Medication
Political factors, 1
Population-based studies, 3, 12, 14–16, 45, 46, 55–63, 77, 81–82, 87, 88, 126, 142–145
workshop agenda, 123–124
see also Demographic factors; National Cancer Data Base; National Program of Cancer Registries; Registries; Surveillance, Epidemiology, and End Results (SEER) program
Poverty, see Socioeconomic status
President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry, 49, 86, 114
Preventive Services Task Force, 13
Privacy Act, 72
Privacy and confidentiality, 3, 4, 7, 12, 45, 46, 71–75, 77, 94
computer-based records, 4, 71, 73, 81, 93
registries, 71–72, 73, 74, 93, 124
state government, 73, 74–75, 92
Process standards, 12, 13, 37, 46, 48, 66, 77, 80, 112, 118
see also Benchmarks
Professional education and training, 1, 22, 23, 52, 59, 67, 90, 94, 110, 119
PROs,see Peer review organizations
Prostate cancer, 24, 31, 39, 41, 42, 45, 47, 49, 60, 85, 113, 133, 136
Provider groups, 9, 16, 19–23, 25, 34
Q
Q-SPAN, 85
Quality Compass, 68
Quality Interagency Coordination Task Force, 49, 86
Quality-of-case measures, 2, 5, 40, 51, 61, 67, 77, 78, 83–86, 109, 111–118, 119–120, 124
aggregate quality scores, 3, 12, 16, 17, 30, 46, 69, 71, 78
case studies, 21, 24–26, 34, 36, 79
core set, 5–6, 12–13, 36, 46, 47–52, 114–116
discrete populations, 16
lacking, 3, 19, 75, 80, 81, 83
risk-adjusted, 39
time-series analysis, 3, 13, 16, 23–24
workshop agenda, 123
see also Accountability;Benchmarks;Outcome measures;Performance standards;Process standards;Standards, general
Quality of life, 25, 27, 29, 41, 44, 45, 111
see also End-of-life care
R
Race/ethnicity, 11, 24, 33, 59, 60, 65, 120, 121, 132, 133, 136, 140, 146
American Indians, 59
language factors, 67
Radiation therapy, 5, 24, 26, 40, 119, 133
American College of Radiology, 20, 23–24
breast cancer, 25, 26, 27, 28, 31, 33, 47, 89, 112, 133, 134, 136, 139
case studies, 23–24, 24, 25, 26, 27, 28, 31, 33
RAND, 91
Records,see Computer-based patient records;Medical charts and records;Privacy and confidentiality
Registries, 3, 5, 39–42, 61, 77, 78, 87–89, 91–92
administrative data and, 37–39
comorbidity, 58, 92, 135, 136, 140
computer-based patient records, 14, 53
health insurance records and, 37–38, 40–42, 45, 57–65 (passim),
hospital, 20, 25, 34, 38, 56(n.5),
linkage efforts, 7, 37–39, 40–42, 45, 57–65 (passim),
National Cancer Institute, general, 4, 38, 39, 40, 41, 92;
see also Surveillance, Epidemiology, and End Results (SEER) program
North American Association of Central
Cancer Registries, 56, 62, 146–147
privacy and confidentiality, 71–72, 73, 74, 93, 124
special studies, 37, 39, 41–42, 45, 87, 91–92
stage of cancer, 37, 40, 45, 58, 84, 92, 136, 139
standards, general, 39, 57, 59, 64, 146–147
state government role, 5, 6, 20, 32–33, 39, 40–42, 45, 56–60, 64–65, 72, 74–75, 84, 88, 91–93
indicators of data quality, by state, 142–146
individual state studies, 132–140
survival rates, 58, 65, 139, 140
workshop agenda, 123–124
see also National Cancer Data Base; National Program of Cancer Registries
Reporting requirements, 3, 6, 14, 15, 17, 53–55, 79, 112
aggregate quality scores, 3, 12, 16, 17, 30, 46, 69, 71, 78
comorbidity, standards, 6, 12, 14, 19, 54–55, 77, 84, 85–86, 87, 90
stage of cancer, standards, 3, 6, 12, 14, 19, 46, 53–54, 77, 84, 85–86, 90
standards, general, 3, 14, 39, 69, 75, 77, 79, 80
treatment, standards, 20, 46, 87
see also Computer-based patient records; Registries
S
Sampling, 15–16, 24, 41, 43, 44, 49, 83
Secondary (metastatic) cancer, 12, 53, 117
SEER, see Surveillance, Epidemiology, and End Results (SEER) program
Socioeconomic status, 15, 40, 65, 77, 119, 132, 133, 134, 140, 146
Special studies, 6, 37, 39, 41–42, 45, 87, 91–92
Stage of cancer, 12, 15, 42, 43, 44, 50, 70, 113, 119
case studies, 19, 25, 26–27, 28, 33, 34
recently diagnosed patients, 1–2, 9, 15, 31, 42, 46, 76, 118, 119, 135
registry data, 37, 40, 45, 58, 84, 92, 136, 139
reporting standardized, 3, 6, 12, 14, 19, 46, 53–54, 77, 84, 85–86, 90
secondary (metastatic) cancer, 12, 53, 117
Standards, general, 13, 18, 21, 43, 73, 110
accreditation of health care organizations, 5–6, 27, 33(n.1),
accreditation of insurance organizations, 5–6, 27, 48, 68–69, 84, 116, 125–126
National Committee for Quality Assurance (NCQA), 5, 48, 66–68, 83–84, 85, 86, 116
accreditation of providers, 23, 27, 67, 116, 125–126
computer-based records, 13–14, 80–81
quality of life, 25, 27, 29, 41, 44, 45, 111
registries, 39, 57, 59, 64, 146–147
see also Benchmarks; Clinical practice guidelines; Outcome measures; Performance standards; Process standards; Quality-of-care measures; Reporting requirements
peer review organizations (PROs), 27, 32, 69, 92, 125
privacy and confidentiality, 73, 74–75, 92
registries, 5, 6, 20, 32–33, 39, 40–42, 45, 56–60, 64–65, 72, 74–75, 84, 88, 91–93
indicators of data quality, by state, 142–146
individual state studies, 132–140
see also National Cancer Data Base; National Program of Cancer Registries; Surveillance, Epidemiology, and End Results (SEER) program
State Inpatient Database, 44
Statistical analyses, 13, 15, 49, 136
aggregate quality scores, 3, 12, 16, 17, 30, 46, 69, 71, 78
case-control studies, 13
clinical trials, 12, 13, 41, 43, 47, 81, 111, 116, 117
cross-sectional studies, 3, 12, 42, 46, 77
sampling, 15–16, 24, 41, 43, 44, 49, 83
time-series analysis, 3, 13, 16, 23–24
Surgery, 44, 70, 113, 135, 142–143
breast cancer, 25, 26, 28, 30–31, 43, 44, 47, 50, 70, 81, 89, 112, 113, 132–140
Surveillance, 118–119
see also National Cancer Data Base; National Program of Cancer Registries; Registries; Reporting requirements; Surveillance, Epidemiology, and End Results (SEER) program
Surveillance, Epidemiology, and End Results (SEER) program, 4, 6, 45, 55, 59–65 (passim),
linkage efforts, 7, 38–39, 41, 45, 57, 62–63, 87, 91, 92–93, 118
Survival rates and durations, 21, 23, 39, 40, 42, 55, 59, 111, 113, 119
breast cancer, 21, 26, 29, 139, 140
Survivorship issues, 43, 44, 45, 116–117, 126
T
Technological innovations (adaptability), 3, 5, 12, 17, 46, 78
see also Computer-based patient records; Internet; Intranets
Telecommunications, 4
see also Internet
Time-series analysis, 3, 13, 16
Patterns of care studies, 23–24
Tobacco use, see Smoking
Training, see Education and training
Treatment, 4–5, 9, 12, 40, 43, 44, 58, 85, 110, 111, 113, 118
breast cancer, 12, 20, 39, 50, 79, 132, 133, 134
clinical trials, 12, 13, 41, 43, 47, 81, 111, 116, 117
elderly persons, 121–122, 132, 135, 136, 139
reporting standardized, 20, 46, 87
see also Adjuvant therapies; Chemotherapy; Medication; Pain and pain control (palliative care); Radiation therapy; Surgery
U
Uninsured and underinsured persons, 11, 15, 120, 139
V
Veterans Affairs, see Department of Veterans Affairs
W
Women, see Breast cancer; Cervical and uterine cancer; Gender factors
World Wide Web, see Internet