Objective: To identify processes that influence data collection, particularly in the reporting of deaths in mortality studies, using patient registry data.
Methods: The University of Toronto Psoriatic Arthritis Clinic has mechanisms for patient followup and identification of deaths. Logistic regression was used to identify patient characteristics that discriminate between 2 populations of deaths, those reported under regular followup and those reported in the context of special studies. Factors examined were based on information available at the patients' last clinic visit and the pattern of patients' clinic visits.
Results: A clear relationship was found between the number of contacts with the clinic and rapid death reporting. However, no particular link between severity of disease and the reporting of death was apparent in this study.
Conclusion: It is recommended that research databases routinely record the time between death and reporting of death and the method of ascertaining and reporting death. More detailed information on the scheduling of clinic visits may also be helpful.