ABSTRACT
PURPOSE: Recently, health policy making is increasingly based on evidence. Therefore, Korean Terminal Cancer Patient Information System (KTCPIS) was developed to meet such need. We aimed to report its developmental process and statistics from 6 months data. METHODS: Items for KTCPIS were developed through the consultation with practitioners. E-Velos web-based clinical trial management system was used as a technical platform. Data were collected for patients who were registered to 34 inpatient palliative care services, designated by Ministry of Health, Welfare, and Family Affairs, from 1st of January to 30th of June in 2009. Descriptive statistics were used for the analysis. RESULTS: From the nationally representative set of 2,940 patients, we obtained the following results. Mean age was 64.8+/-12.9 years, and 56.6% were male. Lung cancer (18.0%) was most common diagnosis. Only 50.3% of patients received the confirmation of terminal diagnosis by two or more physicians, and 69.7% had an insight of terminal diagnosis at the time of admission. About half of patients were admitted to the units on their own without any formal referral. Average and worst pain scores were significantly reduced after 1 week when compared to those at the time of admission. 73.4% faced death in the units, and home-discharge comprised only 13.3%. Mean length of stay per admission was 20.2+/-21.2 days, with median value of 13. CONCLUSION: Nationally representative data on the characteristics of patients and their caregiver, and current practice of service delivery in palliative care units were obtained through the operation of KTCPIS.