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How valid is using cancer registries’ data to identify acquired immunodeficiency syndrome-related non-Hodgkin’s lymphoma?

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Abstract

Objective

We sought to determine the accuracy of cancer registry data regarding the human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) status of patients with non-Hodgkin’s lymphoma (NHL).

Methods

We used the population-based San Diego/Orange County cancer registry to identify 392 patients with HIV-related NHL diagnosed 1994–1999. After matching for age, sex, race, period of NHL diagnosis, and hospital type, we were able to find 324 corresponding patients among the remaining 4,863 NHL patients diagnosed 1994–1999 (who did not have HIV infection according to cancer registry records). We sought to review these patients’ charts at 41 hospitals with 15 separate institutional review boards to determine if the HIV serostatus from the cancer registry was correct. We performed a forward conditional multivariate logistic regression to determine characteristics associated with a false positive HIV status.

Results

The false positive rate was 8% while the false negative rate was 3%. The positive predictive value was 93% while the negative predictive value was 97%. Compared to correctly identified patients, false positives were more likely to be ≥50 years old, female, and treated with chemotherapy and less likely to be single with high grade or extranodal disease.

Conclusion

Using cancer registry data to identify AIDS-related NHL is a valid research practice.

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References

  1. Palella FJ Jr, Delaney KM, Moorman AC, et al (1998) Declining morbidity and mortality among patients with advanced human immunodeficiency virus infection. HIV Outpatient Study Investigators. N Engl J Med 338:853–860

    Article  PubMed  Google Scholar 

  2. State of California Department of Health Standards, Cancer Surveillance Section. California Cancer Registry Data Standards, Assessment Unit. Cancer Reporting in California: Abstracting and Coding Procedures for Hospitals. Volume One Fifth Edition May 1998

  3. Seiffert JE, Price WT, Gordon B (1990) The California tumor registry: a state-of-the-art model for a regionalized, automated, population-based registry. Top Health Rec Manage 11:59–73

    PubMed  CAS  Google Scholar 

  4. Diamond C, Taylor TH, Im T, Anton-Culver H (2006) Presentation and outcomes of systemic non-Hodgkin’s lymphoma: a comparison between patients with acquired immunodeficiency syndrome (AIDS) treated with highly active antiretroviral therapy and patients without AIDS. Leuk Lymphoma 47:1822–1829

    Article  PubMed  Google Scholar 

  5. http://seer.cancer.gov/siterecode/

  6. Percy C, Van Holten V, Muir C (eds) (1990) International Classification of Diseases for Oncology. England: World Health Organization, pp. xxxii–xxxvi

    Google Scholar 

  7. Fritz A, Ries L (eds) (1998) SEER Extent of Disease-1988 Codes and Coding Instructions. Bethesda, Maryland: Cancer Statistics Branch, National Institutes of Health, P. 180

    Google Scholar 

  8. http://seer.cancer.gov/registries/

  9. American Hospital Association (2001) AHA Guide to the Health Care Field. Chicago, IL: Health Forum LLC

    Google Scholar 

  10. Zar JH (1984) Biostatistical Analysis. Englewood Cliffs, NJ: Prentice Hall, p. 378

    Google Scholar 

  11. Diamond C, Taylor TH, Aboumrad T, Anton-Culver H (2006) Changes in acquired immunodeficiency syndrome-related non-Hodgkin lymphoma in the era of highly active antiretroviral therapy: incidence, presentation, treatment, and survival. Cancer 106:128–135

    Article  PubMed  CAS  Google Scholar 

  12. Mocroft A, Katlama C, Johnson AM, et al (2000) AIDS across Europe, 1994–1998, the EuroSIDA Study. Lancet 356:291–296

    Article  PubMed  CAS  Google Scholar 

  13. Cote TR, O’Brien TR, Ward JW, Wilson SE, Blattner WA, National AIDS/Cancer Match Study Group (1995) AIDS and cancer registry linkage: measurement and enhancement of registry completeness. Prev Med 24:375–377

    Article  PubMed  CAS  Google Scholar 

  14. Cote TR, Biggar RJ, Rosenberg PS, et al (1997) Non-Hodgkin’s lymphoma among people with AIDS: incidence, presentation, and public health burden. Int J Cancer 73:645–650

    Article  PubMed  CAS  Google Scholar 

  15. Matthews GV, Bower M, Mandalia S, Powles T, Nelson MR, Gazzard BG (2000) Changes in acquired immunodeficiency syndrome-related lymphoma since the introduction of highly active antiretroviral therapy. Blood 96:2730–2734

    PubMed  CAS  Google Scholar 

  16. Hooper WC, Holman RC, Clarke MJ, Chorba TL (2001) Trends in non-Hodgkin lymphoma (NHL) and HIV-associated NHL deaths in the United States. Am J Hematol 66:159–166

    Article  PubMed  CAS  Google Scholar 

  17. Clarke CA, Glaser SL (2004) Population-based surveillance of HIV-associated cancers: utility of cancer registry data. J Acquir Immune Defic Syndr 36:1083–1091

    PubMed  Google Scholar 

  18. Department of Veteran’s Affairs. Privacy and Release of Information, VHA handbook 1605.1. Washington DC, 2002

  19. Anton-Culver H, Trejo R, Taylor TH, et al (2003) Cancer Incidence and Mortality in Orange County, 1996–2000. Irvine: Cancer Surveillance Program of Orange County/San Diego Imperial Organization for Cancer Control, Epidemiology Division, Department of Medicine, University of California, Irvine

    Google Scholar 

  20. Anton-Culver H, Trejo R, Taylor TH, et al (2003) Cancer Incidence and Mortality in San Diego County, 1996–2000. Irvine: Cancer Surveillance Program of Orange County/San Diego Imperial Organization for Cancer Control, Epidemiology Division, Department of Medicine. University of California, Irvine

    Google Scholar 

  21. Christian MC, Goldberg JL, Killen J, et al (2002) A central institutional review board for multi-institutional trials. N Engl J Med 346:1405–1408

    Article  PubMed  Google Scholar 

  22. Humphreys K, Trafton J, Wagner TH (2003) The cost of institutional review board procedures in multicenter observational research. Ann Intern Med 139:77

    PubMed  Google Scholar 

  23. Annas GJ (2002) Medical privacy and medical research–judging the new federal regulations. N Engl J Med 346:216–220

    Article  PubMed  Google Scholar 

  24. Kulynych J, Korn D (2002) The effect of the new federal medical-privacy rule on research. N Engl J Med 346:201–204

    Article  PubMed  Google Scholar 

  25. Ingelfinger JR, Drazen JM (2004) Registry research and medical privacy. N Engl J Med 350:1452–1453

    Article  PubMed  CAS  Google Scholar 

  26. Holly EA, Gautam M, Bracci PM (2002) Comparison of interviewed and non-interviewed non-Hodgkin’s lymphoma (NHL) patients in the San Francisco Bay Area. Ann Epidemiol 12:419–425

    Article  PubMed  Google Scholar 

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Acknowledgements

We are grateful to Drs. Mohammed Miradi, Douglas Cable, Jerome de Vente, David Bodkin, Richard O’ Connor, and Elizabeth Nghiem for facilitating the IRB process at their institutions. We thank Deborah Bringman for assistance with death certificate and cancer registry information and Katherine Miller for clerical support. Lastly, this project would not have been possible without the data collected by the many cancer registrars of Orange and San Diego Counties.

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Authors and Affiliations

  1. Department of Medicine, UCI Medical Center, University of California Irvine, 101 City Dr. S, Building 53 Room 215 Route 81, Orange, CA, 92868, USA

    Catherine Diamond, Thomas H. Taylor, Theresa Im & Hoda Anton-Culver

  2. Naval Medical Center, San Diego, Department of Medicine, San Diego, USA

    Mark Wallace

  3. Scripps Cancer Center, Scripps Health, San Diego, USA

    Alan Saven

Authors
  1. Catherine Diamond
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  2. Thomas H. Taylor
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  3. Theresa Im
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  4. Mark Wallace
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  5. Alan Saven
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  6. Hoda Anton-Culver
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Corresponding author

Correspondence to Catherine Diamond.

Additional information

Dr. Diamond received support from the National Cancer Institute (K07CA96480) and the California Collaborative Treatment Group funded by the Universitywide AIDS Research Program of the State of California (CH05-SD-607-005).

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Diamond, C., Taylor, T.H., Im, T. et al. How valid is using cancer registries’ data to identify acquired immunodeficiency syndrome-related non-Hodgkin’s lymphoma?. Cancer Causes Control 18, 135–142 (2007). https://doi.org/10.1007/s10552-006-0096-5

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  • DOI: https://doi.org/10.1007/s10552-006-0096-5

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