A Comprehensive Assessment of Excretory Self-management and Health-Related Quality of Life in Individuals with Spina Bifida and Recommendations for the Importance of Transitional Support.

2023 Fiscal Year Final Research Report

• Project/Area Number: 20K23194
• Research Category: Grant-in-Aid for Research Activity Start-up
• Allocation Type: Multi-year Fund
• Review Section: 0908:Society medicine, nursing, and related fields
• Research Institution: Osaka University
• Principal Investigator: Kawahara Tae 大阪大学, 大学院医学系研究科, 助教 (00877805)
• Project Period (FY): 2020-09-11 – 2024-03-31
• Keywords: 二分脊椎症 / 健康関連Quality of Life / 成人 / 医療的ケア / 自記式尺度

Outline of Final Research Achievements

This study developed a Japanese version of the QUAlity of Life Assessment in Spina bifida for Adults (QUALAS-A-J), a self-report HRQOL questionnaire specifically designed for individuals with spina bifida (SB) aged 18 years and older. A team including urologists, nurses, statisticians, and the original authors was organized to conduct forward translation, pilot survey, back translation, and main survey. A total of 16 and 133 individuals with SB responded to the pilot survey and the main survey, respectively. Factor analysis indicated a three-factor structure, and discrimination was confirmed by the correlation coefficient between the QUALAS-A-J and the general QOL scale. The Cronbach's alpha value exceeded 0.66, and the ICC value exceeded 0.8, indicating reliability.

Free Research Field

小児看護学

Academic Significance and Societal Importance of the Research Achievements

本研究で開発したQUALAS-A-Jは、8－12歳用のQUALAS-C-J、13－17歳用のQUALAS-T-Jに続く、18歳以上の二分脊椎症（SB）を持つ成人のための自記式HRQOL尺度である。QUALAS-A-Jの信頼性・妥当性が確認されたことにより、我が国において8歳以上のSB児者のHRQOLが測定できることとなり、経年齢的に変化する合併症や環境要因に対して、個人のHRQOLを追跡・介入を検討することが可能となった。また、QUALASシリーズは国際的尺度として、米国をはじめとする各国で開発が進んでおり、国際共同研究における多面的解釈の可能性を有している。