Kawahara Tae, Sugita Yoshifumi, Momose Hitoshi, Szymanski Konrad M, Hida Eisuke, Yamazaki Akemi
Division of Health Sciences, Departments of Pediatric and Family Nursing, Graduate School of Medicine, Osaka University, Suita, Osaka, Japan.
Department of Urology, Kobe Children's Hospital, Kobe, Hyogo, Japan.
Pediatr Int. 2021 Apr;63(4):423-429. doi: 10.1111/ped.14416. Epub 2021 Feb 27.
We previously developed the Japanese version of The Quality of Life Assessment of Spina Bifida in Teenagers, a health-related quality-of-life instrument specific to children aged 13-17 years with spina bifida (SB). The Quality of Life Assessment of Spina Bifida in Children is a version of this questionnaire for children aged 8-12 years. The purpose of this study was to develop a Japanese version of the Quality of Life Assessment of Spina Bifida in Children (QUALAS-C-J) and verify its reliability and validity.
Three urologists specializing in SB, 2 nurses, and 1 statistician developed the QUALAS-C-J and conducted a pilot and main survey. Participants included children with SB and non-disabled (ND) children. Participants completed the QUALAS-C-J and the Japanese version of KIDSCREEN-27 (J-KIDSCREEN) without parental help.
Five children with SB participated in the pilot study and provided face and content validity. Sixty-three children with SB and 40 age- and sex-matched ND children participated in the main survey. The intraclass correlation coefficient in the retest was 0.80, and Cronbach's alpha in each domain was 0.73. The validity was verified by factor analysis, convergent / divergent validity, and known-groups validity. Factor analysis converged to the same two-factor structure as the original version. The correlation between QUALAS-C-J and J-KIDSCREEN-27 was weak (r=-0.06-0.30). The scores of both groups for the two domains of the QUALAS-C-J were significantly lower in SB than ND children.
QUALAS-C-J is easy to answer, suitable for Japanese children with SB, reliable, and valid. It can be a communication tool for children with SB, medical staff, families, communities, and school teachers.
我们之前开发了青少年脊柱裂生活质量评估的日语版本，这是一种专门针对13 - 17岁脊柱裂（SB）儿童的健康相关生活质量工具。儿童脊柱裂生活质量评估是该问卷针对8 - 12岁儿童的版本。本研究的目的是开发儿童脊柱裂生活质量评估的日语版本（QUALAS - C - J）并验证其信度和效度。
三位专门从事脊柱裂研究的泌尿科医生、两名护士和一名统计学家开发了QUALAS - C - J，并进行了预试验和主要调查。参与者包括脊柱裂儿童和非残疾（ND）儿童。参与者在没有父母帮助的情况下完成了QUALAS - C - J和日语版的儿童生活质量量表27项（J - KIDSCREEN）。
五名脊柱裂儿童参与了预试验研究，并提供了表面效度和内容效度。六十三名脊柱裂儿童和40名年龄及性别匹配的非残疾儿童参与了主要调查。重测的组内相关系数为0.80，每个领域的Cronbach's alpha系数为0.73。通过因子分析、收敛/发散效度和已知群体效度验证了效度。因子分析收敛到与原始版本相同的两因素结构。QUALAS - C - J与J - KIDSCREEN - 27之间的相关性较弱（r = - 0.06 - 0.30）。在QUALAS - C - J的两个领域中，脊柱裂儿童组的得分均显著低于非残疾儿童组。
QUALAS - C - J易于回答，适用于日本脊柱裂儿童，可靠且有效。它可以成为脊柱裂儿童、医护人员、家庭、社区和学校教师之间的沟通工具。
