Validity of caregiver-reported hospital admission in a study on the quality of care received by terminally ill cancer patients

Background: The clinical status of terminally ill patients often makes it impossible for them to report information directly, which indicates the need to rely on information from indirect sources, such as from caregivers. This information needs to be validated, and particular attention must be given to the accuracy of recall. Objective: The objective of this study is to evaluate the agreement between caregiver-reported hospital admissions with the data reported in the regional hospital information system. Methods: A two-level probabilistic sample of cancer deaths from the ISDOC (Italian Survey on Dying of Cancer). For the 2,000 deceased sampled, hospitalizations were identified from the administrative data and reported by the caregivers via a questionnaire. We calculated Cohen's kappa, sensitivity and specificity using the regional archives as the gold standard. A multivariate analysis was performed to assess possible variables that may influence agreement. Results: We interviewed 1,271 caregivers. Sensitivity and specificity were, respectively, 82% (95% confidence interval [CI] = 79-84) and 65% (95% CI = 60-69). Kappa statistic was 0.46 (95% CI = 0.40-0.52). Multivariate analysis showed that agreement increases with educational level and caregiver age. Conclusion: The validation of caregiver's recall for medical procedures has important implications for research and care, because often it is the only information source we can rely on. The questionnaire showed good sensitivity and poor specificity concerning real hospitalizations, and had moderate degree of agreement with the data reported in the administrative data.