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

Hideyuki Hirayama; Eriko Satomi; Yoshiyuki Kizawa; Mayuko Miyazaki; Keita Tagami; Ryuichi Sekine; Kozue Suzuki; Nobuyuki Yotani; Koji Sugano; Hirofumi Abo; Meidai Sakashita; Kazuki Sato; Sari Nakagawa; Yoko Nakazawa; Jun Hamano; Mitsunori Miyashita

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

VernacularTitle:患者報告型アウトカムを用いた専門的緩和ケアの質評価のための患者登録システムの開発：多施設パイロット調査
Author: Hideyuki HIRAYAMA ¹ ; Eriko SATOMI ² ; Yoshiyuki KIZAWA ³ ; Mayuko MIYAZAKI ⁴ ; Keita TAGAMI ⁵ ; Ryuichi SEKINE ⁶ ; Kozue SUZUKI ⁷ ; Nobuyuki YOTANI ⁸ ; Koji SUGANO ⁹ ; Hirofumi ABO ¹⁰ ; Meidai SAKASHITA ¹¹ ; Kazuki SATO ¹² ; Sari NAKAGAWA ¹¹ ; Yoko NAKAZAWA ¹³ ; Jun HAMANO ¹¹ ; Mitsunori MIYASHITA ¹⁴
Author Information

1. Tohoku University School of Medicine, Department of Palliative Nursing
2. National Cancer Center Hospital
3. University of Tsukuba, Faculty of Medicine
4. Iizuka Hospital
5. Tohoku University School of Medicine
6. Kameda Medical Center
7. Tokyo Metropolitan Cancer and Infectious Diseases Center Komagome Hospital
8. National Center for Child Health and Development
9. Juntendo Tokyo Koto Geriatric Medical Center
10. Rokko Hospital
11. Japanese Society of Palliative Medicine, Specialized Palliative Care Promotion Committee
12. Hyogo Prefectural Harima-Himeji General Medical Center
13. Nagoya University Graduate School of Medicine
14. Kobe Gakuin University, Faculty of Pharmaceutical Sciences
Keywords: palliative care; quality of health care; patient reported outcome measures; palliative care team; patient registration system
From:Palliative Care Research 2022;17(4):171-180
CountryJapan
Language:Japanese
Abstract: 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.