Abstract
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). 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. 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 > or =50 years old, female, and treated with chemotherapy and less likely to be single with high grade or extranodal disease. Using cancer registry data to identify AIDS-related NHL is a valid research practice.
Highlights
Population-based cancer registries can contribute to research on non-Hodgkin’s lymphoma (NHL) among human immunodeficiency virus (HIV) patients if the registries can reliably identify the HIV serostatus of NHL patients
Since 1994, the population-based California Cancer Registry has required that HIV serostatus be included in NHL incidence reports [2, 3]
There are no prior studies which validate the accuracy of the cancer registry HIV indicator by verifying the HIV serostatus of NHL patients through medical record review
Summary
This report describes the methods used in identifying subjects for a case control study that has been published elsewhere [4]. The cancer registrar codes the HIV variable as positive, negative or unknown based on physician or laboratory documentation of HIV serostatus. This HIV indicator variable reflects the HIV serostatus at the time of NHL diagnosis only; there is no reporting requirement for follow up for a later HIV/ AIDS diagnosis. According to the registry HIV indicator variable, 392 of these patients were HIV-infected at the time of NHL diagnosis. We intended these patients to be the cases for the planned case control study [4]
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