Following the DISABKIDS group guidelines, we translated and culturally adapted the DISABKIDS Chronic Generic Module (DCGM-37) into Chinese and examined its psychometric properties in Chinese children and adolescents with cancer. We observed satisfied homogeneity, time stability, dimensionality, construct validity, and discriminant validity of the Chinese version of the DCGM-37. Our findings support that the instrument is psychometrically acceptable for assessing HRQoL in Chinese children and adolescents with cancer. As far as we know, this study is the first attempt to develop and examine the psychometric properties of the Chinese version of the DCGM-37 for measuring HRQoL of Chinese children with cancer.
Previous studies focusing on children with a chronic condition reported moderate ceiling effects on children’s rating of the “physical limitation,” “social exclusion,” and “treatment” subscales of the DCGM-37 [21, 24]. Consistent with previous findings focusing on children and adolescents with cancer , no ceiling or floor effects were observed in the present study, indirectly supporting the instrument’s sensitivity in children with cancer. We also found that children’s rating of the DCGM-37 was higher than their parents in mental (the “independence” and “emotion” subscales) and social (the “social exclusion” and “social inclusion” subscales) domains. The potential reason is that parents and children tend to disagree about internal issues, such as anxiety and depression . Because of cancer’s chronic and fatal nature, parents might perceive more severe impacts of their children’s conditions than children themselves. Parents’ psychological distress is closely related to their children’s perceived vulnerability and might have been translated into their children’s perceived suffering .
In the present study, all the 37 items of the DCGM-37 were assigned to its six subscales, indicating good dimensionality. Moreover, for self-report data, the “independence” and “emotion” subscales fitted into the mental health domain, and the “physical limitation” and “treatment” subscales fitted into the physical health domain. In contrast, the “social inclusion” and “social exclusion” subscales fit into the social health domain only after error covariance correction. Social inclusion refers to accepting others and building up positive social relationships, whereas social exclusion relates to stigma and the feeling of being left out. The weakness of model fitness in the social health domain found in the present study and other language versions  might be a consequence of instabilities or inadequacies of the instrument’s conceptual foundation.
Gender stereotypes regarding tolerance with discomfort impact the rating of emotional well-being [8, 28]. In Chinese culture, the endurance of physical discomfort has been encouraged in men’s life . We also observed that boys reported higher emotional well-being than girls. Moreover, adolescents in our study reported higher scores in independence, physical limitation, and treatment than children aged 8–12 years. Lower-income is closely related to a worse quality of life in children with cancer . Consistently, we found that mental health assessed by the DCGM-37 was low in children from families with relatively low monthly income. Importantly, we found that children and adolescents with leukemia had higher HRQoL in all aspects of the DCGM-37measurement than those with sarcoma. Children with leukemia exclusively receive chemotherapy, while children with sarcomas receive complex therapy, such as chemotherapy, radiotherapy, and surgery. Therefore the latter may suffer from more side effects or complications than the former . Our findings support that the Chinese version of the DCGC-37 has excellent discriminate validity for measring HRQoL in children and adolescents with cancer.
Strengths and Limitations
This study’s main strength is establishing convergent validity and discriminant validity for the Chinese version of the DCGM-37. The present study also has several limitations. First, this study was conducted in a single tertiary medical center. Second, convenient sampling might introduce bias on participants’ clinical conditions (e.g., mainly hematologic malignancies in this study). Third, the sample size was relatively small for subgroup comparisons. Furthermore, it was impossible to test the DCGM-37’s responsiveness for detecting minimal important changes of HRQoL in children with cancer due to the cross-sectional design. Future studies should address all these challenges with a larger sample from a variety of facilities.
Implications for Nursing Practice and Future Research
Children with cancer need a reliable and valid tool to assess their health-related quality of life accurately before any intervention could be adequately evaluated and administered. Moreover, it is particularly useful for health professionals, family members, and teachers to understand and support the health-related quality of life for children and adolescents with cancer throughout treatment. There are few such instruments with examined psychometric properties for use in mainland China. This study supports that DCGC-37 is a reliable and valid instrument for assessing health-related quality of life in Chinese children and adolescents with cancer. We hope this tool will help advance research and clinical care for Chinese speaking populations. Health professionals or clinical researchers can use this instrument to evaluate pharmaceutical or non-pharmaceutical interventions in pediatric cancer.