To empower CCSs, they should be evaluated periodically regarding PTSS and PTG and should be provided appropriate care and feedback. The fact that the mental health status of young adult SIBs was similar to CONTs at 15 years after their siblings' diagnoses may help reassure parents who worry about mental health among the siblings of an affected child during and after his/her treatment.
BackgroundThe PedsQL 3.0 Cancer Module is a widely used instrument to measure pediatric cancer specific health-related quality of life (HRQOL) for children aged 2 to 18 years. We developed the Japanese version of the PedsQL Cancer Module and investigated its reliability and validity among Japanese children and their parents.MethodsParticipants were 212 children with cancer and 253 of their parents. Reliability was determined by internal consistency using Cronbach's coefficient alpha and test-retest reliability using intra-class correlation coefficient (ICC). Validity was assessed through factor validity, convergent and discriminant validity, concurrent validity, and clinical validity. Factor validity was examined by exploratory factor analysis. Convergent and discriminant validity were examined by multitrait scaling analysis. Concurrent validity was assessed using Spearman's correlation coefficients between the Cancer Module and Generic Core Scales, and the comparison of the scores of child self-reports with those of other self-rating depression scales for children. Clinical validity was assessed by comparing the on- and off- treatment scores using Kruskal-Wallis and Mann-Whitney U tests.ResultsCronbach's coefficient alpha was over 0.70 for the total scale and over 0.60 for each subscale by age except for the 'pain and hurt' subscale for children aged 5 to 7 years. For test-retest reliability, the ICC exceeded 0.70 for the total scale for each age. Exploratory factor analysis demonstrated sufficient factorial validity. Multitrait scaling analysis showed high success rates. Strong correlations were found between the reports by children and their parents, and the scores of the Cancer Module and the Generic Core Scales except for 'treatment anxiety' subscales for child reports. The Depression Self-Rating Scale for Children (DSRS-C) scores were significantly correlated with emotional domains and the total score of the cancer module. Children who had been off treatment over 12 months demonstrated significantly higher scores than those on treatment.ConclusionsThe results demonstrate the reliability and validity of the Japanese version of the PedsQL Cancer Module among Japanese children.
Social outcomes and quality of life (QOL) of childhood cancer survivors (CCSs) remain unknown in Japan. We investigated these outcomes in young adult CCSs compared to those of their siblings in Japan, and analyzed the association between social outcome and SF-36 health survey subscale scores. Between 2007 and 2009, we performed a cross-sectional survey using self-rating questionnaires. We estimated social outcomes and health-related QOL by performing the SF-36 in each group: CCSs with or without stem cell transplantation (SCT)/radiotherapy (RT) and their siblings. Adjusted odds ratios for outcomes of interest were estimated using logistic regression analysis. Questionnaires from 185 CCSs and 72 CCS's siblings were analyzed. There were no differences in educational attainment or annual income. The SF-36 subscale scores of CCSs with SCT and RT were significantly lower than those of siblings in physical functioning (PF) (p < 0.001 and 0.003, respectively) and general health (GH) (both p = 0.001). Lower PF scores correlated with recurrence (p = 0.041) and late effects (p = 0.010), and poor GH scores with late effects (p = 0.006). The CCSs had made efforts to attain educational/vocational goals; however, a significant proportion of CCSs who had experienced late effects remain at increased risk of experiencing diminished QOL.
To examine the late effects and health-related quality of life among childhood cancer survivors (CCS) after stem cell transplantation (SCT), we performed a cross-sectional survey using self-rating questionnaires. The subjects were divided into 3 groups: SCT-treated CCS, CCS treated without SCT, and the general population who matched for age, gender, residential area, and work status with the CCS. We analyzed the questionnaires of 185 CCS and 1,000 control participants. The median ages of CCS at diagnosis and survey were 8 and 22 years, respectively. The mean final heights of male and female participants were significantly lower for SCT-treated CCS than for CCS treated without SCT and the controls. Among the SCT-treated CCS, >40% were underweight (BMI < 18.5). Late effects were observed in 78% of SCT-treated CCS versus 45% of CCS treated without SCT. Multivariate analysis revealed that >15 years' duration after therapy completion (OR 2.95; p = 0.014), solid tumors (4.31; p = 0.040), radiotherapy (2.82; p = 0.009), recurrence (4.22; p = 0.017), and SCT (3.39; p = 0.014) were significant risk factors for late effects. Subjective symptoms were significantly frequent in SCT-treated CCS. Physical dysfunction, psychological stress, and social adaptation problems were observed in >70% of SCT-treated CCS.
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