Assessing health-related quality of life in Chinese children and adolescents with cancer: validation of the DISABKIDS chronic generic module (DCGM-37)

Abstract

Background With increasing cancer incidence and decreasing cancer mortality, there is a growing need for a valid and culturally adapted tool to measure health-related quality of life in children with cancer. This study validated the DISABKIDS Chronic Generic Module (DCGM-37) in Chinese children and adolescents with cancer. Methods The DCGM-37 was translated and adapted for use in China following the guidelines from its copyright holders. In total, 140 children and adolescents with cancer and their guardians were included in this cross-sectional study. Internal consistency and test-retest reliability were evaluated. Convergent validity was examined using Pearson correlation between the DCGM-37 and the PedsQL 4.0 Generic Core Scale. Dimensionality was clarified using exploratory factor analysis. Discriminant validity was evaluated by comparing DCGM-37 scores by sex, age, family income, and clinical characteristics. Results Internal consistency (Cronbach’s alpha 0.91) and test–retest reliability were good (intraclass correlation coefficient 0.87, 95% confidence interval 0.73–0.94). Strong correlations between the DCGM-37 and the PedsQL 4.0 (r = 0.83) suggest good convergent validity. Six factors explained 51.94% of the total variance. Children with leukemia scored higher than those with sarcoma in all subscales (effect size ranged from 0.39 to 0.83), especially the “social exclusion” subscales (effect size 0.83). Small to moderate differences (effect size ranged from 0.38 to 0.58) were observed by sex, age, and family income. Neither floor nor ceiling effects were observed. Conclusion The DCGM-37 is reliable and valid for measuring health-related quality of life in Chinese children and adolescents with cancer.

Cross-sectional study on the impact of cardiac and hepatic iron overload, as measured by MRI T2*, on the quality of life in children with severe beta-thalassemia major

“…The instrument’s utility is reinforced by its consistency with psychometric analyses from previous studies, providing a solid framework for evaluation. [22–24] Notably, a positive correlation between cardiac T2* values and quality of life, particularly in physical functioning, was identified, highlighting the adverse effects of cardiac iron accumulation. [25] Conversely, hepatic iron overload and SF levels did not significantly impact quality of life.…”

The Chinese Mandarin Version of the Esophageal-Atresia-Quality-of-Life Questionnaires for Children and Adolescents: Evaluation of Linguistic and Content Validity

“…However, rare conditions pose challenges to the translation of a HRQOL questionnaire, why the standard procedure may need practical adaptation, such as producing less forward-backward translations [ 35 , 36 ]. Moreover, many HRQOL measures have been developed in English [ 35 ], and have been translated from English into Chinese [ 23 , 24 , 25 , 26 , 27 , 28 , 29 ]. The EA-QOL questionnaires were developed in the Swedish language, and Sweden is a low-population country.…”

“…Then, studies have demonstrated overall acceptable psychometric performance of the EA-QOL questionnaires among children with EA in Turkey, Poland and the Netherlands [ 20 , 21 , 22 ]. Many QOL/HRQOL questionnaires have been translated from English to Chinese, and the Chinese version of the questionnaires has achieved satisfactory validity and reliability [ 23 , 24 , 25 , 26 , 27 , 28 , 29 ]. In order to increase knowledge of HRQOL of children with EA in China, it is central to investigate the psychometric properties of the EA-QOL questionnaires among Chinese families of children with EA.…”