Review of the performance of methods to identify diabetes cases among vital statistics, administrative, and survey data

Purpose The ability to identify prevalent cases of diagnosed diabetes is crucial to monitoring preventative care practices and health outcomes among persons with diagnosed diabetes. Methods We conducted a comprehensive literature review to assess and summarize the validity of various strategies for identifying individuals with diagnosed diabetes and to examine the factors influencing the validity of these strategies. Results We found that studies using either administrative data or survey data were both adequately sensitive (i.e., identified the majority of cases of diagnosed diabetes) and highly specific (i.e., did not identify the individuals as having diabetes if they did not). In contrast, studies based on cause-of-death data from death certificates were not sensitive, failing to identify about 60% of decedents with diabetes and in most of these studies, researchers did not report specificity or positive predictive value. Conclusions Surveillance is critical for tracking trends in diabetes and targeting diabetes prevention efforts. Several approaches can provide valuable data, although each has limitations. By understanding the limitations of the data, investigators will be able to estimate diabetes prevalence and improve surveillance of diabetes in the population.