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

Research Project

Project/Area Number 19K10534
Research Category

Grant-in-Aid for Scientific Research (C)

Allocation TypeMulti-year Fund
Section一般
Review Section Basic Section 58010:Medical management and medical sociology-related
Research InstitutionKochi 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
Project Status Completed (Fiscal Year 2022)
Budget Amount *help
¥4,420,000 (Direct Cost: ¥3,400,000、Indirect Cost: ¥1,020,000)
Fiscal Year 2021: ¥650,000 (Direct Cost: ¥500,000、Indirect Cost: ¥150,000)
Fiscal Year 2020: ¥1,170,000 (Direct Cost: ¥900,000、Indirect Cost: ¥270,000)
Fiscal Year 2019: ¥2,600,000 (Direct Cost: ¥2,000,000、Indirect Cost: ¥600,000)
Keywords患者報告型アウトカム / 生活の質 / 電子入力システム / 全身性エリテマトーデス / 診療の質
Outline of Research at the Start

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)患者における重要な指標である。本研究では、電子入力端末を用いた患者報告型アウトカム入力システムを開発する。測定の結果は全体の集計結果とともに患者へもフィードバックする。得られたQOLデータからは、より質の高いリアルワールドエビデンスの研究が可能となる。また、これまでに開発したレセプトデータを用いて評価する診療の質の評価指標と本研究で得る受療情報を同時に測定し、レセプトデータからの測定結果と比較する。最終的には、この入力システムを、多施設SLE疾患レジストリへ導入することを目指す。

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.

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。

Report

(5 results)
  • 2022 Annual Research Report   Final Research Report ( PDF )
  • 2021 Research-status Report
  • 2020 Research-status Report
  • 2019 Research-status Report
  • Research Products

    (3 results)

All 2022 2021

All Journal Article (3 results) (of which Peer Reviewed: 3 results,  Open Access: 2 results)

  • [Journal Article] Association of one-point glucocorticoid-free status with chronic damage and disease duration in systemic lupus erythematosus: a cross-sectional study2022

    • Author(s)
      Sada KE, Katayama Y, Asano Y, Hayashi K, Miyawaki Y, Ohashi K, Katsuyama E, Katsuyama T, Takano-Narazaki M, Matsumoto Y, Yoshimi R, Shimojima Y, Ohno S, Kajiyama H, Ichinose K, Sato S, Fujiwara M, Yajima N
    • Journal Title

      Lupus Sci Med

      Volume: 9 Issue: 1 Pages: 1-6

    • DOI

      10.1136/lupus-2022-000772

    • Related Report
      2022 Annual Research Report
    • Peer Reviewed / Open Access
  • [Journal Article] Association of glucocorticoid doses and emotional health in lupus low disease activity state (LLDAS): a cross-sectional study2021

    • Author(s)
      Miyawaki Yoshia、Shimizu Sayaka、Ogawa Yusuke、Sada Ken-ei、et al.
    • Journal Title

      Arthritis Research & Therapy

      Volume: 23 Issue: 1 Pages: 79-79

    • DOI

      10.1186/s13075-021-02466-2

    • NAID

      120007019117

    • Related Report
      2020 Research-status Report
    • Peer Reviewed / Open Access
  • [Journal Article] Prevalence and treatment conditions for hypertension and dyslipidaemia complicated with systemic lupus erythematosus: A multi-centre cross-sectional study2021

    • Author(s)
      Saito Mayu、Yajima Nobuyuki、Yanai Ryo、Tsubokura Yumi、Ichinose Kunihiro、Yoshimi Ryusuke、Ohno Shigeru、Sada Ken-ei
    • Journal Title

      Lupus

      Volume: N.A. Issue: 7 Pages: 1146-1153

    • DOI

      10.1177/09612033211006790

    • Related Report
      2020 Research-status Report
    • Peer Reviewed

URL: 

Published: 2019-04-18   Modified: 2024-01-30  

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