Accuracy of Self-Reports of Acquired Immunodeficiency Syndrome and Acquired Immunodeficiency Syndrome-related Conditions in Women

To investigate the validity of self-reported acquired immunodeficiency syndrome (AIDS) among women enrolled in a prospective study of human immunodeficiency virus (HIV) infection, the authors compared the self-reported occurrence of AIDS-specific diagnoses with AIDS diagnoses documented by county AIDS surveillance registries. Also examined was the association between participant characteristics and the validity of self-reports. Among the 339 HIV-infected participants in the Northern California Women's Interagency HIV Study between October 1994 and September 1998, 217 reported having been given a diagnosis of AIDS. Of these 217 women, 157 (72%) were listed in the registry as having AIDS. Among the specific AIDS-related conditions reported by three or more women, the sensitivity was highest for tuberculosis (100%), CD4 cell count less than 200 (84%), Mycobacterium avium complex (73%), and Pneumocystis carinii pneumonia (69%), and the positive predictive value was highest for CD4 cell count less than 200 (75%). Among all reported AIDS diagnoses, the kappa statistic was highest for cryptococcosis (0.67) and CD4 cell count less than 200 (0.57). The only statistically significant participant characteristic associated with inaccurate reporting of an AIDS diagnosis was being a current cigarette smoker (adjusted odds ratio = 2.57, 95% confidence interval: 1.17, 5.64). Overall, self-reporting of any AIDS-related condition is fairly accurate, but there is great variability in the accuracy of specific conditions.