Development of the Japanese version of the Pediatric Quality of Life Inventory™ Brain Tumor Module

Abstract

BackgroundThe Pediatric Quality of Life Inventory™ (PedsQL™) is a widely-used modular instrument for measuring health-related quality of life in children aged 2 to 18 years. The PedsQL™ Brain Tumor Module is comprised of six scales: Cognitive Problems, Pain and Hurt, Movement and Balance, Procedural Anxiety, Nausea, and Worry. In the present study, we developed the Japanese version of the PedsQL™ Brain Tumor Module and investigated its feasibility, reliability, and validity among Japanese children and their parents.MethodsTranslation equivalence and content validity were verified using the standard back-translation method and cognitive debriefing tests. Participants were recruited from 6 hospitals in Japan and the Children's Cancer Association of Japan, and questionnaires were completed by 137 children with brain tumors and 166 parents. Feasibility of the questionnaire was determined based on the amount of time required to complete the form and the percentage of missing values. Internal consistency was assessed using Cronbach's coefficient alpha. Test-retest reliability was assessed by retesting 22 children and 27 parents. Factorial validity was verified by exploratory factor analyses. Known-groups validity was described with regard to whole brain irradiation, developmental impairment, infratentorial tumors, paresis, and concurrent chemotherapy. Convergent and discriminant validity were determined using Generic Core Scales and State-Trait Anxiety Inventory for children.ResultsInternal consistency was relatively high for all scales (Cronbach's coefficient alpha > 0.70) except the Pain and Hurt scale for the child-report, and sufficient test-retest reliability was demonstrated for all scales (intraclass correlation coefficient = 0.45-0.95). Factorial validity was supported through exploratory factor analysis (factor-item correlation = 0.33-0.96 for children, 0.55-1.00 for parents). Evaluation of known-groups validity confirmed that the Cognitive Problems scale was sensitive for developmental impairment, the Movement and Balance scale for infratentorial tumors or paresis, and the Nausea scale for a patient currently undergoing chemotherapy. Convergent and discriminant validity with the PedsQL™ Generic Core Scales and State-Trait Anxiety Inventory for children were acceptable.ConclusionsThe Japanese version of the PedsQL™ Brain Tumor Module is suitable for assessing health-related quality of life in children with brain tumors in clinical trials and research studies.

Development of the Japanese version of the Pediatric Quality of Life Inventory™ Transplant Module

“…The correspondence between these two subscales was lower than that in the original English version (ICC = 0.52, 0.59, respectively) . This trend was noted in the original English and translated versions of the PedsQL Generic Core Scales, and the other disease‐specific version of the PedsQL . The psychological and/or mental domain is more difficult to observe and evaluate than the observable physical and behavioral domains.…”

“…13 This trend was noted in the original English and translated versions of the PedsQL Generic Core Scales, 18,27 and the other disease-specific version of the PedsQL. 28,29 The psychological and/or mental domain is more difficult to observe and evaluate than the observable physical and behavioral domains. In the evaluation of HRQOL, it is necessary to interpret child and parent evaluation scores on such characteristics.…”

Quality of life after living donor liver transplant for biliary atresia in Japan

“…This trend was similar to that observed for the original English and other translated versions of the PedsQL Generic Core Scales, 8,18 and other diseasespecific versions of the PedsQL. 19,20 The psychological and/or mental domain is more difficult to observe and evaluate than the observable physical and behavioral domains.…”

Measurement Properties of the Arabic Lebanon Version of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales for Young Child (5 - 7 years), and Child Aged 8 - 12 Years: Quality of Life of in Urban and Rural Children in Lebanon

“…For our purpose, the PedsQL4.0 generic module represented a particularly attractive generic measure as it has been widely used in children and adolescent integrating generic core scales and disease-specific modules into one measurement system it is translated into many international languages (Berkes et al, 2010;Reinfjellet al, 2006;Sato et al, 2010) (http://www.pedsql.org) (Upton et al, 2005;Gkoltsiou et al, 2008;Bek, Simsek, Erel, Yakut, & Uygur, 2009). To the authors' knowledge, the Arabic version has not previously been assessed for validity and reliability in Lebanon.…”