Measuring health-related quality of life in children with cancer living in mainland China: feasibility, reliability and

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RESEARCH

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Measuring health-related quality of life in children with cancer living in mainland China: feasibility, reliability and validity of the Chinese mandarin version of PedsQL 4.0 Generic Core Scales and 3.0 Cancer Module Yi Ji1, Siyuan Chen2, Kai Li1, Nong Xiao3, Xue Yang3, Shan Zheng1 and Xianmin Xiao1*

Abstract Background: The Pediatric Quality of Life Inventory (PedsQL) is widely used instrument to measure pediatric health-related quality of life (HRQOL) for children aged 2 to 18 years. The purpose of the current study was to investigate the feasibility, reliability and validity of the Chinese mandarin version of the PedsQL 4.0 Generic Core Scales and 3.0 Cancer Module in a group of Chinese children with cancer. Methods: The PedsQL 4.0 Genetic Core Scales and the PedsQL 3.0 Cancer Module were administered to children with cancer (aged 5-18 years) and parents of such children (aged 2-18 years). For comparison, a survey on a demographically group-matched sample of the general population with children (aged 5-18) and parents of children (aged 2-18 years) was conducted with the PedsQL 4.0 Genetic Core Scales. Result: The minimal mean percentage of missing item responses (except the School Functioning scale) supported the feasibility of the PedsQL 4.0 Generic Core Scales and 3.0 Cancer Module for Chinese children with cancer. Most of the scales showed satisfactory reliability with Cronbach’s a of exceeding 0.70, and all scales demonstrated sufficient test-retest reliability. Assessing the clinical validity of the questionnaires, statistically significant difference was found between healthy children and children with cancer, and between children on-treatment versus offtreatment ≥12 months. Positive significant correlations were observed between the scores of the PedsQL 4.0 Generic Core Scale and the PedsQL 3.0 Cancer Module. Exploratory factor analysis demonstrated sufficient factorial validity. Moderate to good agreement was found between child self- and parent proxy-reports. Conclusion: The findings support the feasibility, reliability and validity of the Chinese Mandarin version of PedsQL 4.0 Generic Core Scales and 3.0 Cancer Module in children with cancer living in mainland China.

Background Currently, an increasing number of children with cancer are cured for their diseases in the world, including China. However, common treatments such as surgery, radiotherapy, chemotherapy, whether palliative or curative, can have deleterious side-effects affecting many aspect of the quality of children’s lives – not only * Correspondence: [email protected] 1 Department of Pediatric Surgery, Children’s Hospital of Fudan University, Shanghai, 201102, China Full list of author information is available at the end of the article

physical aspects but also social and emotional aspects [1,2]. Survivors may experience a number of long-term adverse effects from the tumor and its treatment [3-6]. Focusing on the patients’ psychosocial and social wellbeing in addition to their physical health is an essential requir