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CDC HIV/AIDS/Viral Hepatitis/STD/TB Prevention News Update
Undiagnosed and Unreported AIDS Deaths: Results from the San
Susan Scheer; Mari McQuitty; Paul Denning; Laura Hormel; Boyd
September 18, 2001
Journal of Acquired Immune Deficiency Syndromes (08.01.01) Vol

Surveillance of AIDS is necessary to monitor trends in the epidemic, follow changes in the characteristics of persons most severely affected by HIV infection, focus prevention efforts, and plan medical, social services and community programs. It is imperative that surveillance is accurate, complete, and representative of all populations affected. One way to evaluate the AIDS reporting system is to count cases of HIV-infected persons dying with undiagnosed AIDS, or cases that go unreported. Use of medical examiner reports offer data on both undiagnosed cases and unreported cases.

The investigators, members of the San Francisco Department of Public Health (SFDPH), the National Center for HIV, STD and TB Prevention (NCHSTP/CDC) and the San Francisco Medical Examiner's Office, performed HIV antibody testing on all San Francisco medical examiner cases in which toxicology testing had been done from March 1995 through May 1997. Autopsy, external examination, and medical record review determined AIDS diagnoses. Record reviews also allowed the authors to determine the completeness of AIDS reporting by identifying previously diagnosed but unreported cases. Medical examiner cases were chosen because they are more likely than the general population of HIV-infected persons to include substance users, persons of color, and the homeless. These disadvantaged populations are more likely to have difficulty receiving health care services and are thus more likely to be missed by the AIDS reporting system.

AIDS cases diagnosed in the City and County of San Francisco must be reported to the San Francisco Department of Public Health. AIDS surveillance data are routinely collected through both active and passive activities. During the study period active surveillance included data collected at 10 of 11 acute care hospitals, four of the nine health department clinics, and 10 private physicians' offices in which a large number of persons with AIDS received care. With persons who met the AIDS case definition, additional information was abstracted from the medical record. Death certificates were reviewed weekly to identify persons who died with AIDS. The medical records of men ages 25 to 60 whose death certificates did not list a specific cause of death were also reviewed to identify previously unreported persons with AIDS.

Passive surveillance by the San Francisco Department of Public Health is accomplished by having physicians and infection control practitioners notify the health department of patients diagnosed with AIDS. During the period of this investigation, 85 percent of AIDS cases were reported through active surveillance. Fifteen percent were reported through passive surveillance, death certificate review and through data from other health departments.

The results were cross-referenced with the San Francisco AIDS registry to identify previously reported AIDS cases, as well as with national AIDS registries. The medical records of unreported cases were procured and analyzed to determine whether AIDS had been diagnosed prior to death.

According to the authors, "Of 1959 decedents tested, 176 (9%) were HIV positive; 105 (60%) were identified as having AIDS by the Medical Examiner. Of the 105 AIDS cases, 101 (96%) had been previously diagnosed; 98 (97%) had been previously reported. Overall, diagnosis and reporting were 93% complete. HIV-infected decedents were more likely than those uninfected to be men and <45 years old, and less likely to be Asian/Pacific Islander or Native American (p <.001). They were more likely to have died of suicide (p <.05) or drug abuse/overdose (p <.001)." The authors found only 4 persons with AIDS in a 27-month period who had died without an AIDS diagnosis prior to death. The results of this study indicate that in San Francisco, AIDS case reporting is highly complete. According to the investigators, the study "provides strong evidence that persons with AIDS in San Francisco are likely to be diagnosed with AIDS at a medical facility prior to death and refutes concerns that the current surveillance system has missed a substantial proportion of patients by relying on health care settings to identify persons with AIDS." Free health care services are available to everyone in San Francisco, including those without health insurance and undocumented immigrants. Cities with lower access to health services might identify a higher proportion of previously undiagnosed or unreported persons.

Programmatically, according to the authors, the results of the study call for more programs in suicide prevention and substance abuse treatment in order to decrease deaths among HIV-infected persons.