1. Cancer Linkage With an HIV/STD Registry: Describing the Cancer Morbidity Among HIV/AIDS Patients and Opportunities for Improving Surveillance June 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. Background Non-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. Background HAART 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. Background HAART 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 PercentComplete Data ElementHIV/AIDS RegistryCancer Registry Name100% Date of Birth99% SSN76%98% Race98% Sex99%

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 All Cancer Cases N=744,160 All AIDS Cases N=46,004 Developed Cancer N=2,574 Male51%82%89% Median Age at AIDS Dx ---3639 Median Age at CancerDx 66-- Non-Hisp White73%39%48% Non-Hisp Black10%36%26% Hispanic14%24%26%

19. All AIDS cases N=46,004 Developed Cancer N=2,574 Men who have Sex with Men* 57%67% Injection Drug Use16%11% Heterosexual14%10% Blood Transfusion<1% Other/Unk12% 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. ObsExpSIR (95% CI) Male8545.8147.3 (137.6-157.5) Female17.08 215.3 (125.4-344.7) Overall8715.9148.2 (138.6-158.4) AIDS-Defining Cancers Kaposi Sarcoma

22. ObsExpSIR (95% CI) Male82022.3 36.8 (34.3-39.4) Female1093.1 35.6 (29.2-42.9) Overall92925.436.7 (28.2-44.9) AIDS-Defining Cancers Non-Hodgkin’s Lymphoma

23. Kaposi Sarcoma Non-Hodgkin’s Lymphoma SIR (95% CI) Men who have Sex with Men* 188.6 (175.2-202.8)43.2 (39.8-46.7) Heterosexual 66.6 (45.5-94.0)29.8 (24.2-36.3) Injection Drug Use 50.8 (36.6-68.7)24.1 (19.5-29.4) Kaposi Sarcoma and Non-Hodgkin’s Lymphoma by Transmission Risk *includes MSM and IDU

24. ObsExpSIR (95% CI) Female376.5 5.7 (4.0-7.8) AIDS-defining cancers Invasive Cervical Cancer

25. Non-AIDS Defining Cancers –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  Calculated SIRs for 25 non-AIDS defining cancers with >4 observed cases

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. ObsExpSIR (95% CI) Anal752.135.8 (28.2-44.9) Hodgkin’s Lymphoma 1127.515.0 (12.3-18.0) Lip51.14.8 (1.6-11.1) Myeloma206.13.3 (2.0-5.1) Tonsil93.32.7 (1.3-5.2) Non-AIDS-Defining Cancer Excess in Texas PWAs

28. ObsExpSIR (95% CI) Lung14454.42.7 (2.2-3.1) Liver2310.02.3 (1.5-3.5) Lymphocytic Leukemia 104.52.2 (1.1-4.1) Rectal3315.22.2 (1.5-3.1) Melanoma2313.21.8 (1.1-2.6) Non-AIDS-Defining Cancer Excess in Texas PWAs

29. Non-AIDS-Defining Cancer Lower in Texas PWAs ObsExpSIR (95% CI) Prostate3060.90.5 (0.3-0.7)

30. ObsExpSIR (95% CI) Men who have Sex with Men* 611.153.1 (40.6-68.2) Heterosexual2.37.5 (0.9 -27.1) Injection Drug Use6.416.8 (6.2-36.5) Other/Unk6.320.0 (7.3 -43.4) Anal Cancer by Transmission Risk *includes MSM and IDU

31. ObsExpSIR (95% CI) Men who have Sex with Men* 164.83.3 (1.9-5.4) Injection Drug Use71.83.9 (1.6-8.1) Liver and IHB Cancer by Transmission Risk *includes MSM and IDU

32. ObsExpSIR (95% CI) Men who have Sex with Men* 6424.82.6 (2.0.-3.3) Heterosexual288.63.3 (2.2 -4.7) Injection Drug Use279.32.9 (1.9-4.2) Other/Unk2210.82.0 (1.3-3.1) 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