Jennifer Chase, MSPH Texas HIV/STD Epidemiology and Surveillance Branch Melanie Williams, PhD

1. Cancer Linkage With an HIV/STD Registry: Describing the Cancer Morbidity Among HIV/AIDS Patients and Opportunities for Improving SurveillanceJune 5, 2007 Jennifer Chase, MSPH Texas HIV/STD Epidemiology and Surveillance Branch Melanie Williams, PhD Cancer Epidemiology and Surveillance Branch Nancy Weiss, PhD Cancer Epidemiology and Surveillance Branch Tammy Sajak, MPH Texas HIV/STD Epidemiology and Surveillance Branch Paul Betts, MS Cancer Epidemiology and Surveillance Branch

2. Acknowledgements • National Cancer Institute Eric Engels, MD, MPH Phillip W. Virgo • HIV/STD Epidemiology and Surveillance Branch Barry Mitchell, MPH Sharon Melville, MD, MPH

3. Outline • Background • HIV/AIDS – Cancer Match • Overview • Findings • Next Steps • Lessons Learned

4. Background • Match was performed in collaboration with the Viral Epidemiology Branch National Cancer Institute (NCI), the Texas Cancer Epidemiology and Surveillance Branch, and Texas HIV/STD Epidemiology and Surveillance Branch • Comprehensively matched the Texas Cancer and HIV/AIDS Registries for the first time as part of the NCI, “Cancer HIV/AIDS Match Study”

5. Background • People with HIV and AIDS are at high risk for developing certain cancers • “AIDS-defining” cancers for HIV-infected • Kaposi Sarcoma • Non-Hodgkin’s Lymphoma • Invasive Cervical Cancer • Other types of cancer also appear to be more common among persons with persons with AIDS (PWAs)

6. BackgroundNon-AIDS Defining Cancers • Some non-AIDS defining cancers have been found to occur in excess among PWAs • Pancreatic • Laryngeal • Heart (usually melanomas and sarcomas) • Vulva • Vaginal • Kidney • Penile • Soft tissues • Hodgkin’s lymphoma • Anal • Multiple Myeloma • Leukemia • Lung • Oral cavity • Lip • Esophageal • Stomach • Liver

7. BackgroundHAART and Cancer • Highly Active Antiretroviral Therapy (HAART) introduced in Mid 1990s • Reductions in some AIDS-defining cancers • Kaposi Sarcoma: dramatic declines • Non-Hodgkin’s Lymphoma: Effect of HAART not clear, some studies show decline • Invasive Cervical Cancer: Studies have been conflicting

8. BackgroundHAART and Cancer • PWAs living longer and sustaining fewer opportunistic infections making cancer a more prominent cause of death • Pre-HAART, 10% of deaths from cancer • Year 2000, 28% from cancer

9. HIV/AIDS Cancer Match Study • Purpose: To link HIV/AIDS registries to cancer registries in multiple sites in the US that represent the major epicenters of the HIV/AIDS epidemic, including Texas (NY, MA, NJ, IL, FL, City of NY, Los Angeles, San Francisco, Seattle, San Diego, Atlanta) • Expect 40,000-50,000 cancer cases among 500,000 persons with AIDS • Diversity of geography, HIV risk groups, and racial/ethnic minorities

10. HIV/AIDS Cancer Match Study • Objectives: • To monitor cancer incidence in persons with HIV and AIDS • Determine risk of cancer among persons with HIV/AIDS • Determine which factors may be predictive among persons with HIV/AIDS • Determine if cancers in persons with HIV/AIDS differ from cancers among the general population • To increase communication between the local HIV/AIDS and cancer registries to enhance surveillance

11. HIV/AIDS Cancer Match Study • Typically, only 1/3 of AIDS related cancers are recorded in both registries • Non-AIDS-related cancers are not reported to HIV/AIDS registries, but cancer registries collect them • HIV/AIDS related data are not collected by cancer registries • Other data may be missing on one registry and found in another, such as dates of birth or death that can provide a more complete research file

12. Texas Match Overview Cancer Registry Cases Included: • 744,160 cases • Texas residents, diagnosed from 1995-2003 HIV/AIDS Registry Cases Included: • 93,120 HIV positive only and HIV/AIDS cases • Texas residents, diagnosed from 1980-March 2006

13. Analysis Overview Included: • Cancer Diagnoses • Cancers diagnosed with +/- 5 years of AIDS diagnosis • Invasive tumors only • AIDS cases • 15-69 years of age • Diagnosed with AIDS 1991-03/2006 • Alive for at least one month in 1995-2003

14. Match Overview • Records were linked by computer using commercial probabalistic matching software • Match based on name, date of birth, social security number, race, sex, date of death, and residential information • Both cancer and HIV/AIDS files blinded from NCI researchers

15. Match Overview • Software takes data common to both registries • Defines the distribution of the identifying variables • Attributes probability scores to the likelihood of matches on these variables being found by chance, and sums the scores • Results in score that indicates the strength of the match between records in the two registries • So fields like sex have little variability and add little to the match • SSN is virtually unique though and can indicate a high probability of a match, unless there is an error in the SSN • Allows some latitude for errors (like name misspelling) and ignores missing data

16. Completeness of Texas Data Elements

17. Match Overview • Overall, 2,547 AIDS cases (n=46,004) had at least one cancer diagnosed during the +/- 5 year time period (1995-2003) • Identified 1,006 (72%, n=1,388) Texas Kaposi Sarcoma cases diagnosed from 1995-2003 were not in the Texas HIV/AIDS Registry • Identified 321 “presumptive” and 110 “definitive” 1995-2003 Kaposi Sarcoma cases not in the Texas Cancer Registry • Identified 151 non-Hodgkin’s Lymphoma cases not in the Texas Cancer Registry, diagnosed from 1995-2003 (n=17,098)

18. Demographic Characteristics Among People Included in AIDS-Cancer Match

19. HIV Transmission Risk Among People Included in AIDS-Cancer Match *includes MSM and IDU

20. Standardized Incidence Ratio • Standardized incidence ratios (SIR) were calculated to com • Compare cancer rates among PWAs to rates among the general population of Texas Standardized Incidence Ratio (SIR) = Observed # of cancer cases in AIDS population Expected # of cancer cases in the general Texas population

21. AIDS-Defining Cancers Kaposi Sarcoma

22. AIDS-Defining Cancers Non-Hodgkin’s Lymphoma

23. Kaposi Sarcoma and Non-Hodgkin’s Lymphoma by Transmission Risk *includes MSM and IDU

24. AIDS-defining cancers Invasive Cervical Cancer

25. Non-AIDS Defining Cancers • Calculated SIRs for 25 non-AIDS defining cancers with >4 observed cases • Lymphocytic Leukemia • Melanoma of the Skin • Myeloid and Monocytic Leukemia • Myeloma • Pancreatic • Prostate • Rectal • Stomach • Testis • Thyroid • Tongue • Tonsil • Anal • Bladder • Breast • Brain • Colon • Esophageal • Gum and Other Mouth • Hodgkin’s Lymphoma • Kidney • Laryngeal • Lip • Liver • Lung

26. Findings • Of the 25 non-AIDS defining cancers • 14 no significant difference between observed and expected cases • 10 significantly higher • 1 significantly lower

27. Non-AIDS-Defining Cancer Excess in Texas PWAs

28. Non-AIDS-Defining Cancer Excess in Texas PWAs

29. Non-AIDS-Defining Cancer Lower in Texas PWAs

30. Anal Cancer by Transmission Risk *includes MSM and IDU

31. Liver and IHB Cancer by Transmission Risk *includes MSM and IDU

32. Lung Cancer by Transmission Risk *includes MSM and IDU

33. Summary • Kaposi’s Sarcoma (n=871) and Non-Hodgkin’s Lymphoma (n=929) represented the majority of cancers found in this cohort • All of the AIDS defining cancers were found to be in excess as expected • 10 non-AIDS defining cancers were found in excess in the Texas AIDS population, 9 of these have risk factors involving infectious agents, suppressed immune systems, and/or tobacco use • Cancers associated with HPV infection, immuno-suppression, and tobacco use appear to be a particular problem in the HIV/AIDS community

34. Next Steps • Utilize linkage to improve both HIV/AIDS and cancer surveillance • Examine cd4 counts/immunosuppression in relation to cancer diagnoses • Examine geographical differences • Re-match every 3-4 years • Explore long-term use of HAART on changes in cancer incidence • Utilize data to inform prevention and service activities

35. Lessons Learned • Use the linkage as an opportunity to enhance registry data quality and future linkages • Do homework/receive background documentation on what makes a case in one registry versus the other, national data standards, and procedures/practices that can affect linkage and/or interpretation of results • If the registries are in agreement that linkage files can be shared between them, each receive the same files • Ensure that data sharing between registries is spelled out in detail in IRB request and/or MOU

36. For Additional Information Contact: Melanie Williams, Ph.D. Senior Epidemiologist Texas Cancer Registry, Department of State Health Services (DSHS) Phone: 512-458-7111 ext. 3633 E-mail: melanie.williams@dshs.state.tx.us