AIDS and Cancer Registry Linkage: Measurement and Enhancement of Registry Completeness

doi:10.1006/pmed.1995.1061

Preventive Medicine

Volume 24, Issue 4, July 1995, Pages 375-377

https://doi.org/10.1006/pmed.1995.1061 Get rights and content

Abstract

Background and methods. To measure AIDS registry completeness for Kaposi′s sarcoma (KS) and cancer registry completeness for KS and non-Hodgkin′s lymphoma (NHL), we linked AIDS and cancer registries at selected health departments. Results. We found 10,350 people with KS: 1,935 reported only to the AIDS registry, 1,428 reported only to the cancer registry, and 6,987 reported to both. Ninety-three cases of non-HIV-associated KS were expected. For KS, AIDS registry completeness was 84% [6,987/(6,987 + 1,428 − 93)] and cancer registry completeness was 78% [6,987/(6,987 + 1,935)]. Cancer registry completeness for AIDS-related NHL was 76%. Conclusion. If this linking were conducted nationally, about 5,700 additional cases of AIDS and 10,000 additional cases of AIDS-related cancers would be recorded.

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Cited by (31)

AIDS-related Burkitt lymphoma in the United States: What do age and CD4 lymphocyte patterns tell us about etiology and/or biology?
2010, Blood
Citation Excerpt :
Data were obtained from the National Cancer Institute US population-based HIV/AIDS Cancer Match (HACM) study.11-14 The study links registry records of a cohort of persons with HIV/AIDS in 15 United States state and metropolitan areas to their corresponding cancer registry record to ascertain cancer outcomes, based on a probabilistic matching algorithm.15 Analysis was performed using de-identified data for 1980-2005.
Trimodal or bimodal age-specific incidence rates for Burkitt lymphoma (BL) were observed in the United States general population, but the role of immunosuppression could not be excluded. Incidence rates, rate ratios, and 95% confidence intervals for BL and other non-Hodgkin lymphoma (NHL), by age and CD4 lymphocyte count categories, were estimated using Poisson regression models using data from the United States HIV/AIDS Cancer Match study (1980-2005). BL incidence was 22 cases per 100 000 person-years and 586 for non-BL NHL. Adjusted BL incidence rate ratio among males was 1.6× that among females and among non-Hispanic blacks, 0.4× that among non-Hispanic whites, but unrelated to HIV-transmission category. Non-BL NHL incidence increased from childhood to adulthood; in contrast, 2 age-specific incidence peaks during the pediatric and adult/geriatric years were observed for BL. Non-BL NHL incidence rose steadily with decreasing CD4 lymphocyte counts; in contrast, BL incidence was lowest among people with ≤ 50 CD4 lymphocytes/μL versus those with ≥ 250 CD4 lymphocytes/μL (incidence rate ratio 0.3 [95% confidence interval = 0.2-0.6]). The bimodal peaks for BL, in contrast to non-BL NHL, suggest effects of noncumulative risk factors at different ages. Underascertainment or biological reasons may account for BL deficit at low CD4 lymphocyte counts.
Population-Based Linkage of AIDS and Cancer Registries. Importance of Linkage Algorithm
2007, American Journal of Preventive Medicine
Citation Excerpt :
The ACMR linkage methodology is described in the Methods section. These matches were the basis of several published reports describing the relative risks of a variety of AIDS defining and other malignancies in AIDS patients.1–12 No full-scale quality or validity check of the ACMR linkage protocol is known to have been published.
This study evaluates linkage algorithms used in 1997 for Los Angeles County by the AIDS-Cancer Match Registry to estimate the risk of cancer among people with HIV/AIDS.
In 2001, a linkage between the Los Angeles County cancer and AIDS registries using a five-pass algorithm was compared with the 1997 linkage results that used a two-pass algorithm.
The five-pass linkage detected all of the previously identified matches (6571) as well as another 431 (6.2%), which had been missed.
Record linkage methodologic decisions can markedly affect matching sensitivity and specificity. It is probable that the AIDS-Cancer Match Registry two-pass linkage has underestimated the risks of some cancers among people with AIDS.
Neoplastic Complications of HIV Infection
2004, AIDS and Other Manifestations of HIV Infection
Methodology used for "Software for Automated Linkage in Italy" (SALI)
2001, Journal of Biomedical Informatics
Linkage of epidemiological registries can provide cost-effective information on the associations between different diseases or exposures in the population under study and on completeness of surveillance system databases. We describe the program SALI (software for automated linkage in Italy) aimed at matching individual records from medium-sized registries (in the order of 100,000 records), where the desired outcome is to miss as few links as possible and, because of low link-likelihood (<1%), a manual revision of matched pairs is feasible. SALI, developed in CA-Clipper language, uses registry files in dBase format. It requires only name, surname, and date of birth as key fields, and it allows for spelling errors in Italian or other Latin languages through a specific algorithm. Furthermore, a double-blind procedure ensures data confidentiality. The main linkage procedure is based on four stages, two automatic ones, and two where the operator can decide through specific windows whether to accept stage-selected matches. SALI takes into account possible errors in key fields thus reducing false negatives. It was used to solve the problem of linkage between AIDS and cancer registries in Italy. It can be used with every IBM-compatible computer system, assuring uniquely high portability.
AIDS oncology
2000, Infectious Disease Clinics of North America
Citation Excerpt :
KS also had been described as a rare complication of immunosuppression, leading investigators to explore the relationship between these new cases of KS and immunosuppression. The prevalence of KS among patients with AIDS was noted to be approximately 20% early in the epidemic, representing an almost 73,000-fold increase above the incidence observed in the general population.7,17 The highest prevalence was noted in men having sex with men.7
Kaposi's sarcoma (KS), non-Hodgkin's lymphoma (NHL), squamous cell carcinoma (SCC), Hodgkin's disease (HD), plasmacytoma, and leiomyosarcoma (in children) are tumors seen with increased frequency in patients infected with HIV. Their development depends on interplay of factors, including viral coinfection with Kaposi's sarcoma herpesvirus (KSHV), Epstein–Barr virus (EBV), or human papillomavirus (HPV); increased immunologic stimulation with viral and opportunistic infections; and decreased immune surveillance with progressive immunodeficiency.
The presentation of malignancy in those infected with HIV is often different from that seen in immunocompetent individuals. Patients with HIV generally have a more advanced stage and more aggressive clinical course. For patients with fever, weight loss, or lymphadenopathy, distinguishing malignancy from progressive HIV or opportunistic infection is critical. Once a diagnosis of malignancy is made, a treatment plan that considers the patient's stage of HIV, stage of malignancy, and risk for opportunistic infection must be devised.
The role of HAART (highly active antiretroviral therapy) in this treatment plan is not completely clear. It is, however, clear that the incidence of some HIV-associated malignancies, namely KS and subtypes NHL, have decreased with the advent of HAART. Moreover, patients presenting with malignancy, but with controlled HIV and moderate CD4 counts, are equally capable of tolerating full-dose chemotherapy and radiotherapy.
This article reviews the current knowledge about HIV-associated malignancies, their epidemiology, pathogenesis, clinical manifestations, and treatment.
Spectrum of AIDS-associated malignant disorders
1998, Lancet
To clarify which types of cancer result from AIDS, we compared the cancer experiences of people with AIDS with those of the general population by matching population-based cancer and AIDS registries in the USA and Puerto Rico.
We used a probabilistic matching algorithm to compare names, birth dates, and, where available, social-security numbers of 98336 people with AIDS and 1125098 people with cancer aged less than 70 years. We defined AIDS-related cancers as those with both significantly raised incidence post-AIDS and increasing prevalence from 5 years pre-AIDS to 2 years post-AIDS.
Among people with AIDS, we found 7028 cases of Kaposi's sarcoma (KS), 1793 of non-Hodgkin lymphoma (NHL), and 712 other cases of histologically defined cancer. Incidence rates among people with AIDS were increased 310-fold for KS, 113-fold for NHL, and 1·9-fold (95% Cl 1·5–2·3) for other cancers. Of 38 malignant disorders other than KS and NHL, only angiosarcoma (36·7-fold), Hodgkin's disease (7·6-fold), multiple myeloma (4·5-fold), brain cancer (3·5-fold), and seminoma (2·9-fold) were raised and increasing significantly (p<0·02) from the pre-AIDS to the post-AIDS period.
Interpretation is complicated by screening and shared risk factors, such as sexual behaviour and cigarette smoking. However, our data indicate that AIDS leads to a significantly increased risk of Hodgkin's disease, multiple myeloma, brain cancer, and seminoma. Immunological failure to control herpes or other viral infections may contribute to these malignant diseases.

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Regular ArticleAIDS and Cancer Registry Linkage: Measurement and Enhancement of Registry Completeness

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AIDS and Cancer Registry Linkage: Measurement and Enhancement of Registry Completeness