Survey of potential cancer registry items to enhance the usefulness of cancer registry data

Abstract

Background: Cancer registry data can help plan for cancer services and to identify where further progress is needed, in order to improve the lives of patients with cancer. This study investigated the possibility of collecting additional information and the priority of the information by examining other cancer registry items. We aimed to suggest additional data items to be collected to enhance the usefulness of cancer registry data. Methods: We examined items that could potentially be added by comparing the cancer registration items in five foreign registries and large hospitals in Korea. Based on the foreign and domestic hospital cancer registry data, a questionnaire survey was administered to 272 cancer registry workers nationwide and 10 cancer experts to investigate the possibility of expanding the variables. The proportion and rank of each item were analyzed. Results: There were similar items for demographic information and cancer diagnosis between foreign cancer registries and the Korea Central Cancer Registry (KCCR). However, the KCCR had fewer items for staging, treatment, and follow-up. There were 29 items to be collected with high priority. Items under demographic information included date of birth, race and country of birth. Items for cancer diagnosis included type of cancer, smoking history and type of pathologic test. Treatment information included the date of treatment, chemotherapy and radiation. Items under the stage and prognostic factors included TNM stage, collaborative stage, and comorbidities. Finally, items under follow-up information included survival, cancer state and recurrence information. Conclusions: Cancer registration workers and cancer experts generally agreed on the need to expand the essential items for cancer registration. The findings of this study will be useful for devising plans to expand cancer registration items.