Development of a Patient-Reported Outcome Measurement System and Quality of Care Validation in a Collagen Disease Registry

2022 Fiscal Year Final Research Report

• Project/Area Number: 19K10534
• Research Category: Grant-in-Aid for Scientific Research (C)
• Allocation Type: Multi-year Fund
• Section: 一般
• Review Section: Basic Section 58010:Medical management and medical sociology-related
• Research Institution: Kochi University (2020-2022); Okayama University (2019)
• Principal Investigator: Sada Kenei 高知大学, 医学部, 特任教授 (70423308)
• Project Period (FY): 2019-04-01 – 2023-03-31
• Keywords: 患者報告型アウトカム

Outline of Final Research Achievements

We conducted a review of the paper-based questionnaire forms collected from the systemic lupus erythematosus registry, in which the principal investigator participated. Subsequently, we created an input form to facilitate the inclusion of additional measurement items, such as quality of life, on an electronic terminal. A web-based registration and management system was then developed to enable registration of both newly and previously registered patients at multiple facilities, while also allowing for batch management of data. The system was designed to permit batch downloading of the collected data in CSV format. To enhance the input system, a trial was conducted utilizing the developed input system. Subsequently, the system was implemented in a registry, and preparations were made to evaluate patients' intention to use the system and discuss potential solutions.

Free Research Field

リウマチ膠原病学

Academic Significance and Societal Importance of the Research Achievements

生活の質（QOL）に代表される患者報告型アウトカムは、全身性エリテマトーデス（SLE）患者における「死亡」や「不可逆的な慢性障害」などと関連するだけでなく、医療経済学的評価を行う上でも重要な指標である。しかし、紙ベースの調査は煩雑であり、特に観察研究において十分な調査が行われていない。本研究では、電子入力端末を用いた、より簡便で機密性の保持された患者報告型アウトカム入力システムを開発した。