Using Cancer Registry Data for Comprehensive Cancer Control

1. Using Cancer Registry Data for Comprehensive Cancer Control Christie Eheman, PhD, National Program of Cancer Registries, Division of Cancer Prevention and Control Passport for the Future- A Cancer Free Tennessee April 24, 2009

2. Cancer is a reportable disease Collect standardized data on all cancers diagnosed not a sample or a survey Cancer is the only chronic disease for which we have population based incidence data in each state Overview: Cancer Surveillance

3. National Program of Cancer Registries

4. Scope of CDC Cancer Surveillance • Cancer Surveillance System • Data on approximately 1.2 million new invasive cancer cases are submitted to CDC each year • Includes data on approximately 13 million invasive cancer cases diagnosed during 1995–2005 • 96% coverage of U.S. population with NPCR • 100% NPCR and NCI-SEER combined

5. Surveillance reports: national, state and local incidence data for cancer by age, race, gender, geographic regions National and regional data can be used to describe cancer patterns in special populations and investigate rare cancers Guide planning, implementation, and evaluation of cancer control programs at a national, state, and local level Identify and document disparities Advance clinical, epidemiologic, and health services research How is central cancer registry data used?

6. Annual Report to the Nation • Update of death and incidence cancer rates • 2008 report • First time report documented decline in cancer incidence • Special focus on tobacco-related cancers • State and regional differences in lung cancer trends • Collaboration between CDC, NCI, North American Association of Central Cancer Registries (NAACCR), ACS

7. MMWR Surveillance Summary • Collaboration with OSH • First time that CDC has reported on tobacco-related cancers on more than 90% of the population • Findings emphasize need for ongoing surveillance • Identify populations at greatest risk • Evaluate effectiveness of targeted tobacco control programs and policies

8. State Cancer Profiles • Comprehensive Cancer Control Plans • Dynamic views of cancer statistics for prioritizing cancer control efforts • Nation • State • County • Collaboration between NCI and CDC http://statecancerprofiles.cancer.gov/

9. National cancer statistics Collaboration, CDC, NCI, NAACCR State, regional, and national data Rates for whites, blacks, Asians/Pacific Islanders (A/PI), American Indians/Alaska Natives (AI/AN), Hispanics, and children United States Cancer Statistics http://www.cdc.gov/uscs

10. State cancer incidence reports Respond to state-level inquiries and requests Comprehensive Cancer Control Planning Identifying state and local disparities Evaluate success of public health programs State and County data

11. State of Tennessee Comprehensive Cancer Control Plan 2009 – 2012 • How is Comprehensive Cancer Control Accomplished? • Determine the cancer burden; • Identify the needs of communities and/or population-based groups • Develop interventions and infrastructure to address the needs; and • Evaluate the impact of these interventions on the health of the community/population • Data on cancer incidence provides valuable data each step of the way

12. What type of factors can be evaluated? • Incidence rates • Comparison to other states and National rates • Rural versus urban differences • Differences between counties – percent of population below poverty level • Risk factors – tobacco use; screening • Stage at diagnosis • Screening effectiveness • Disparities in diagnosis • Treatment

13. USCS: State vs. National ComparisonsIncidence Rates for Males, All Races Combined, 2005 • Comparison of incidence rates in Tennessee with U.S. incidence rates • Top 10 cancers • Rates are age-adjusted • Similar comparisons could be made between county and state rates http://www.cdc.gov/uscs

14. USCS: State vs. National ComparisonsIncidence Rates for Females, All Races Combined, 2005 • Comparison of incidence rates in Tennessee with U.S. incidence rates • Top 10 cancers • Rates are age-adjusted • Similar comparisons could be made between county and state rates http://www.cdc.gov/uscs

15. USCS: State RankingsIncidence Rates for Female Breast Cancer, 2005 • Ranking of incidence rates (including U.S.) from highest to lowest • Available for 27 cancer sites by sex • All races combined • Rates are age-adjusted • Similar comparisons could be made for TN counties http://www.cdc.gov/uscs

16. Condensed version of USCS State and national data only State versus national comparisons for top 10 cancer rates By sex By race and ethnicity State Cancer Facts http://apps.nccd.cdc.gov/StateCancerFacts/

17. State Cancer FactsIncidence Rates for Prostate Cancer by Race and Ethnicity, 2005 • Comparison of incidence rates by race and ethnicity in Tennessee • Suppress data if rates not stable • Rates are age-adjusted • Similar comparisons could be made at the county level http://apps.nccd.cdc.gov/StateCancerFacts/

18. State Cancer FactsIncidence Rates for Female Breast Cancer by Race and Ethnicity, 2005 • Comparison of incidence rates by race and ethnicity in Tennessee • Suppress data if rates not stable • Rates are age-adjusted • Similar comparisons could be made at the county level http://apps.nccd.cdc.gov/StateCancerFacts/

19. Overall Cancer Incidence Rates by County, Tennessee, 1999-2003 Source: Tennessee Comprehensive Cancer Control Program. Burden of Cancer in Tennessee. Available at: http://health.state.tn.us/Downloads/TNBurdenofCancer08.pdf

20. Overall Cancer Mortality Rates by County, Tennessee, 1999-2003 Source: Tennessee Comprehensive Cancer Control Program. Burden of Cancer in Tennessee. Available at: http://health.state.tn.us/Downloads/TNBurdenofCancer08.pdf

21. Example: • State of Tennessee Comprehensive Cancer Control Plan 2009 – 2012 • Goal: Reduce colorectal cancer mortality through screening and early detection • How do you monitor progress? • Mortality • Incidence – stage at diagnosis

22. Colorectal cancer: Tennessee, 1999-2003 Burden of Cancer in Tennessee 2007 http://health.state.tn.us/Downloads/TNBurdenofCancer08.pdf

23. Evaluating Effectiveness of Screening:Female Breast Cancer Cases Diagnosed at Early Stage before Mammography Widely AcceptedMichigan, 1985–1987 Percentageof Cases < 39.1 39.1–48.1 48.2–55.9 56 & over

24. Female Breast Cancer Cases Diagnosed at Early Stage - Mammography Widely AcceptedMichigan, 2000–2002 Percentageof Cases < 39.1 39.1–48.1 48.2–55.9 56 & over

25. Enhancement of registry data • Examples of possible linkages • National Death Index • Survival • Disparities • Differences in stage at diagnosis • Treatment differences • Insurance claims • Treatment data • Other Programs and Agencies • Indian Health Service administrative data

26. Examples: Identification of disparities • Florida • Registry data were linked to Healthcare Administration inpatient and outpatient data –1997-2000 • Elderly, Hispanic and Black women, uninsured, and women on Medicaid were less likely to receive standard treatment • Proposed next steps - Enhance and expand breast cancer preventive and treatment services for patients and providers Voti L, Richardson LC, Reis I, Fleming LE, MacKinnon J, Coebergh JWW. The effect of race/ethnicity and insurance in the administration of standard therapy for local breast cancer in Florida. Breast Cancer Res Treatment 2006; 95: 89-95.

27. Summary • Cancer registry data is a valuable resource • Quantify cancer burden • Particular populations • Geographic areas • Monitor changes in incidence or stage at diagnosis • Success of interventions • Changes in environmental or behavioral factors

28. Christie Eheman CEheman@cdc.gov The findings and conclusions in this presentation have not been formally disseminated by Centers for Disease Control and Prevention/the Agency for Toxic Substances and Disease Registry and should not be construed to represent any agency determination or policy.