A Novel Approach to Obtain Follow-up Data on the Vital Status of Registered Cancer Patients: The Kuwait Cancer Registry Experience.

OBJECTIVE: We present an approach to obtain accurate and complete data on the last known vital status, and the date of last known vital status of all Kuwaiti cancer patients. These data are essential for robust estimation of population-based cancer survival. METHODS: Government-issued Civil ID numbers (IDs) of patients registered during 2000-2013 were obtained from the Kuwait Cancer Registry. Missing IDs were traced using the Ministry of Health's Information System or the patient's medical records. IDs were manually entered in the Public Authority of Civil Information (PACI) database to ascertain vital status for patients whose vital status was not known in the registry. To obtain the date of death for deceased patients, IDs were then manually entered and searched in the electronic archive of "Death Announcements" at the Ministry of Health's Central Records Department of Births and Deaths. Patients not found in the "Death Announcements" archive were considered alive as on 31 December 2015. RESULTS: The traditional method to obtain data on cancer patients' vital status, restricted to patients whose death was certified as due to cancer, had captured only 62% of all patients' deaths. This new approach resolved the vital status for 98.3% of patients for whom it was previously unknown. The impact was substantial: the proportion of patients known to be dead rose from 27.9% to 45.0%, while the proportion presumed alive dropped from 72.1% to 53.7%. Only 1.3% of the patients remained lost to follow-up. CONCLUSION: This approach substantially improved the quality and completeness of follow-up data for all Kuwaiti cancer patients. We recommend that this approach should be performed routinely in Kuwait to enable accurate estimation and monitoring of population-based survival trends.