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Enhancing Data Systems to Improve the Quality of Cancer Care (2000)

Chapter: Appendix D: Information on Cancer Registries, by State

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Suggested Citation:"Appendix D: Information on Cancer Registries, by State." Institute of Medicine and National Research Council. 2000. Enhancing Data Systems to Improve the Quality of Cancer Care. Washington, DC: The National Academies Press. doi: 10.17226/9970.
×

APPENDIX D

Information on Cancer Registries, by State

Suggested Citation:"Appendix D: Information on Cancer Registries, by State." Institute of Medicine and National Research Council. 2000. Enhancing Data Systems to Improve the Quality of Cancer Care. Washington, DC: The National Academies Press. doi: 10.17226/9970.
×

TABLE D-1 State Cancer Registries—Indicators of Data Quality

 

General Information

Data Quality Indicators

Year Casefindingg Began Using:

Statea

Year of Initial Operation

Year Population-Based Datab Available

Death Certificate Only(%)c

Estimate of Completeness (%)d

Included in U.S. Combined Rates?e

Certified in 1999?f

M.D. Offices

Ambulatory Surgical Centers

Arizona

1981

1995

2.2

86.0

 

1992

1992

California

1946

1988

1.2

100.4

1988

1988

Colorado

1968

1988

1.8

102.2

1995

1988

Connecticut

1935

1935

1.5

108.9

No

No

Delaware

1972

1972

5.7

92.9

 

1998

No

Florida

1981

1981

NA

99.7

 

No

1995

Hawaii

1960

1960

0.4

112.8

1960

1978

Idaho

1969

1970

1.7

101.1

1980

1988

Illinois

1985

1986

5.4

93.0

No

1994

Indiana

1987

1987

NA

NA

   

No

No

Iowa

1973

1973

1.2

101.9

No

1988

Kentucky

1991

1991

3.2

90.6

No

1995

Louisiana

1974

1988

1.6

94.4

1995

1988

Maine

1983

1983

NA

89.5

   

1995

1995

Maryland

1982

1982

NA

NA

   

1996

1996

Massachusetts

1980

1982

NA

91.0

   

No

1982

Michigan

1985

1985

1.2

99.4

 

No

No

Minnesota

1988

1988

1.0

98.8

No

No

Suggested Citation:"Appendix D: Information on Cancer Registries, by State." Institute of Medicine and National Research Council. 2000. Enhancing Data Systems to Improve the Quality of Cancer Care. Washington, DC: The National Academies Press. doi: 10.17226/9970.
×

Montana

1979

1979

NA

83.5

   

No

No

Nebraska

1987

1987

0.3

92.0

 

1990

No

Nevada

1979

1979

2.0

NA

   

No

1990

New Hampshire

1986

1987

NA

89.4

   

1986

1987

New Jersey

1978

1979

2.7

99.0

1978

1988

New Mexico

1966

1973

2.0

94.9

1973

1973

New York

1940

1976

4.8

93.3

   

No

No

North Carolina

1987

1990

NA

89.0

   

1990

1995

Pennsylvania

1982

1985

NA

97.2

   

No

No

Rhode Island

1986

1986

2.1

101.3

1986

1986

Tennessee

1986

1989

NA

NA

   

No

No

Texas

1949

1992

6.5

92.9

   

No

No

Utah

1966

1966

0.2

98.7

1973

1994

Virginia

1970

1990

NA

81.5

   

1998

1998

Washington

1991

1992

3.5

103.4

 

1992

1992

West Virginia

1993

1993

2.1

92.5

 

No

1993

Wisconsin

1976

1978

3.7

103.8

1992

1992

Wyoming

1962

1962

0.4

91.0

 

1962

1997

a Thirty-six state registries responded to NAACCR's Call for Data. The nonparticipating registries include: Alaska, Alabama, Arkansas, Georgia, Kansas, Mississippi, Missouri, North Dakota, Ohio, Oklahoma, Oregon, South Carolina, South Dakota, and Vermont.

b A population-based registry is defined as one that “includes information about all cases of a specific disease in a geographically defined area that relates to a specific population.” [From: Wallace RB (ed). Maxcy, Rosenau, Last-Public Health and Preventive Medicine, 14th ed. Stamford, CT: Appleton and Lange, 1998.]

Suggested Citation:"Appendix D: Information on Cancer Registries, by State." Institute of Medicine and National Research Council. 2000. Enhancing Data Systems to Improve the Quality of Cancer Care. Washington, DC: The National Academies Press. doi: 10.17226/9970.
×

cStandards for Cancer Registries, Vol. III, p. 41. Based on the experience of the SEER Program, 1% –1.5% death-certificate-only (DCO) cases are expected and acceptable. Values between 0% and 1% or 1.5% and 3% require analysis and explanation. If 0% are DCO, death clearance has not been performed. A high percentage of DCO cases may be the result of underreporting from other sources, incomplete investigation (or follow back) of the DCO cases due to limited resources, or both. In addition, when a population-based registry first begins death clearance, the percentage of DCO cases tends to be higher because some DCO cases were diagnosed prior to the operation of the registry and therefore are not linked to the registry database.

dVol. I: Incidence, p. I-7. The adjusted NAACCR estimate of completeness was calculated using the following equation:
Adjusted % Completeness = (Observed Cs–Ds) × 100%
Expected Cs
where observed Cs_= number of cancer cases for all sites in the registry, Ds = number of duplicate records (calculated using the NAACCR estimate of duplicates, based on the registry's results from completing the Protocol for Assessing Duplicate Cases), and Expected Cs = estimated number of cancer for all sites if completeness is 100%. [See Vol. I: Incidence, pp. 7–8 for a detailed derivation of this equation and its variables.]
For registries that did not complete the Protocol for Assessing Duplicate Cases, the NAACCR adjusted estimate for completeness is omitted from the registry description.

e Indicates states which meet all the following criteria for inclusion in the U.S. combined rates (Vol. I: Incidence, pp. 6–8):

  1. Data for all 5 years, 1991–1995, were submitted.

  2. The registry completed the Protocol for Assessing Duplicate Cases, developed by the Data Evaluation and Publication Committee, and submitted the results. If a registry had an estimate of duplicates that exceeded one per 1,000 records or 0.1% given its required sample size, the registry was not eligible for inclusion in the combined rates.

Suggested Citation:"Appendix D: Information on Cancer Registries, by State." Institute of Medicine and National Research Council. 2000. Enhancing Data Systems to Improve the Quality of Cancer Care. Washington, DC: The National Academies Press. doi: 10.17226/9970.
×
  1. The registry ran the case records for 1991–1995 against the Call for Data metafile prepared for the EDITS software and made all corrections.

  2. The completeness of case ascertainment was completed using the formula above. Every registry included in the combined rates had an adjusted completeness estimate of at least 90%. The computed completeness estimate for all registries included in the combined incidence rates for the United States was about 99%.

f See Table D-2 for certification criteria. Registries were certified in 1,000 based on cases reported as of 1996.

g This date indicates the first year that cancer cases were reported from various sources. In addition to physicians' offices and ambulatory surgical centers, which are included in this summary table, cancer cases were also reported from the following sources: hospitals, death certificates, nonhospital pathology labs, radiation therapy sites, interstate data exchange, and nursing homes/hospices. Complete data for these sources can be found in the monograph.

SOURCES: Chert VW, Wu XC, Andrews PA (eds.). 1999, Cancer in North America: 1991–1995. Volume One: Incidence. Sacramento, CA: NAACCR. Tucker TC, HL Howe and HK Weir. 1999. Certificationfor population-based registries. J Registry Manage Feb:24–27.

Suggested Citation:"Appendix D: Information on Cancer Registries, by State." Institute of Medicine and National Research Council. 2000. Enhancing Data Systems to Improve the Quality of Cancer Care. Washington, DC: The National Academies Press. doi: 10.17226/9970.
×

TABLE D-2 North American Association of Central Cancer Registries (NAACCR) Criteria and Standards for Certification of Cancer Registries

Criteria

Measure

Rationale

Gold Standard

Silver Standard

Completeness of case ascertainment

1. Compare actual incidence rate to expected incidence rate, using SEER Incidence to U.S. mortality ratio method*

2. Death clearance: Match all cancer deaths with registry records, and follow back on unmatched cancer deaths

3. Number of duplicate records

Demonstrates the registry has identified a sufficient proportion of expected cases.

Provides a more accurate count of cancer incidence by looking at unmatched cancer deaths.

Duplicates should be consolidated to ensure that one case is not entered more than once from different institutions.

95% completeness

Complete death clearance

<1 duplicate per 1,000

90% completeness

Complete death clearance

<2 duplicates per 1,000

Completeness of information recorded

1. Sociodemographic Information (% missing)

2. Percentage of “death certificate only” (DCO) cases

Includes: age at diagnosis, sex, race, county of residence at diagnosis

DCO cases often lack information on key variables, which limits utility, so a minimal proportion of DCO cases is desired.

<2% missing (3% for race)

<3%

<3% missing (5% for race)

<5%

Suggested Citation:"Appendix D: Information on Cancer Registries, by State." Institute of Medicine and National Research Council. 2000. Enhancing Data Systems to Improve the Quality of Cancer Care. Washington, DC: The National Academies Press. doi: 10.17226/9970.
×

Accuracy of data

EDITS metafile: an electronic editing procedure capable of identifying logical inconsistencies in case records

Ensures that information is consistent and accurate enough to be useful,

99% cases passing EDITS

97% cases passing EDITS

Timeliness

All information and corrections must be entered within 23 months from close of diagnosis year.

Timely submission of information

Data submitted

Data submitted

NOTE: For certification at either the gold or silver standard, a registry must meet all criteria for that particular level of certification.

* The incidence to mortality ratio method uses the ratio of SEER incidence (site, race, and sex-specific) to U.S. mortality, and applies that ratio to the site, race, and sex-specific mortality rates of the population served by the registry. The expected incidence rate is calculated by multiplying these rate ratios by the cancer-specific mortality rate for that population. The incidence to mortality rate ratio method provides a more accurate expected incidence rate because it allows for the possibility that different populations have lower incidence rates. In the past, expected incidence was calculated by applying incidence rates of one area with complete case ascertainment, to the area under evaluation; this method assumed that the cancer incidence rates were similar.

SOURCE: Tucker TC, HL Howe and HK Weir. Certification for Population-BasedCancer Registries. J Registry Management. Feb 1999:24–27.

Suggested Citation:"Appendix D: Information on Cancer Registries, by State." Institute of Medicine and National Research Council. 2000. Enhancing Data Systems to Improve the Quality of Cancer Care. Washington, DC: The National Academies Press. doi: 10.17226/9970.
×
Page 141
Suggested Citation:"Appendix D: Information on Cancer Registries, by State." Institute of Medicine and National Research Council. 2000. Enhancing Data Systems to Improve the Quality of Cancer Care. Washington, DC: The National Academies Press. doi: 10.17226/9970.
×
Page 142
Suggested Citation:"Appendix D: Information on Cancer Registries, by State." Institute of Medicine and National Research Council. 2000. Enhancing Data Systems to Improve the Quality of Cancer Care. Washington, DC: The National Academies Press. doi: 10.17226/9970.
×
Page 143
Suggested Citation:"Appendix D: Information on Cancer Registries, by State." Institute of Medicine and National Research Council. 2000. Enhancing Data Systems to Improve the Quality of Cancer Care. Washington, DC: The National Academies Press. doi: 10.17226/9970.
×
Page 144
Suggested Citation:"Appendix D: Information on Cancer Registries, by State." Institute of Medicine and National Research Council. 2000. Enhancing Data Systems to Improve the Quality of Cancer Care. Washington, DC: The National Academies Press. doi: 10.17226/9970.
×
Page 145
Suggested Citation:"Appendix D: Information on Cancer Registries, by State." Institute of Medicine and National Research Council. 2000. Enhancing Data Systems to Improve the Quality of Cancer Care. Washington, DC: The National Academies Press. doi: 10.17226/9970.
×
Page 146
Suggested Citation:"Appendix D: Information on Cancer Registries, by State." Institute of Medicine and National Research Council. 2000. Enhancing Data Systems to Improve the Quality of Cancer Care. Washington, DC: The National Academies Press. doi: 10.17226/9970.
×
Page 147
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One of the barriers to improving the quality of cancer care in the United States is the inadequacy of data systems. Out-of-date or incomplete information about the performance of doctors, hospitals, health plans, and public agencies makes it hard to gauge the quality of care. Augmenting today's data systems could start to fill the gap.

This report examines the strengths and weaknesses of current systems and makes recommendations for enhancing data systems to improve the quality of cancer care. The board's recommendations fall into three key areas:

  • Enhance key elements of the data system infrastructure (i.e., quality-of-care measures, cancer registries and databases, data collection technologies, and analytic capacity).
  • Expand support for analyses of quality of cancer care using existing data systems.
  • Monitor the effectiveness of data systems to promote quality improvement within health systems.
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