Development of a Patient Registry System for Specialized Palliative Care Quality Assessment Using Patient-reported Outcomes: A Multicenter Pilot Study

Objective: This study aimed to investigate the feasibility of a patient registry system for assessing PCT (palliative care team) by PRO (Patient-reported outcome) in Japan. Methods: We operated a patient registry system with electronic data collection at eight hospitals in 2021 in Japan. We consecutively included newly referred patients for a month and followed up with them for a month. IPOS or ESAS obtained as PRO at the start of the intervention, three days later, and every week after. The primary endpoint was the response rate to the symptom rating scale by patients and providers. Results: 318 patients were enrolled. The patient response rate was 59.1% at intervention and 37.0% after intervention, and the medical provider response rate was 98.4% at intervention and 70.3% after intervention. Interviews with PCT members indicated that participants required support to input PRO responses required support and paper questionnaire was better and that managing the survey date and overall management was burdensome. Discussion: Although only about half of the patients were able to respond to the PRO, this was the same level as in previous studies. The system and its operation method have many problems. We found that improvements such as reducing items and making the patient interviews paper-based are necessary to expand the system nationwide.

Quality-of-life of Pediatric Cancer Patients Receiving End-of-life Care and Related Factors: Using a Proxy QOL Rating Scale from the Nurse’s Perspective

Objectives: The study purpose was to examine quality-of-life (QOL) of pediatric cancer patients at end-of-life and related factors using a QOL proxy rating scale from the nurse’s perspective. Methods: We conducted a survey in October 2015−February 2016. The subjects to be surveyed were nurses who were primarily in charge of patients with childhood cancer at end-of-life. We investigated 22 items of the Good Death Inventory for Pediatrics (GDI-P) and their related factors. Results: In total, 53 proxy evaluate questionnaires were completed from 18 centers. Among the eight factors of GDI-P, “Relief from physical and psychological suffering” was the lowest. The total score of GDI-P was positively correlated with the structure and process of care (r=0.58). Although there was a bias in the number of cases, in the case of the place of death was the intensive care unit, the total score of GDI-P was lower than home and the general ward. Conclusions: It was suggested that the top priority in improving QOL was relief from suffering and the structure and process of care were related to QOL.