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Background: Although there is an increasing need to investigate the health-related quality of life (HRQOL) of children and adolescents with chronic conditions in Japan, there is currently no standardized measure in which young children can directly answer questions about their HRQOL. The DISABKIDS Smiley measure uses face emoticons to measure HRQOL and distress caused by illness and related treatments among young children. We tested the reliability and validity of the DISABKIDS Smiley measure in a sample of young Japanese children.Methods: After translating the child and parent questionnaires into Japanese, a pre-test was performed to test the content validity in accordance with guidelines from the DISABKIDS Group. In total, 60 child-parent pairs were recruited to participate in the survey. We measured internal consistency of the scales using Cronbach's alpha as well as Guttman split-half, test-retest reliability using intraclass correlation coefficients (ICCs) at a two-week interval, and ICCs between child- and parent-reported scores. Convergent validity of the scale was also examined against the Kiddy-KINDL scale.Results: Both child-reported and parent-reported scales showed good internal consistency and split-half reliability. Test-retest reliability of the child-reported version (ICC = 0.53, p = 0.004) was lower than that of the parent-reported version (ICC = 0.80, p < 0.001). Moderate to good agreement between child- and parent- reported scales was observed in both the first (ICC = 0.75, p < 0.001) and second administration (ICC = 0.71, p < 0.001). Moderate to very strong positive correlations were observed with the total score of the Kiddy-KINDL child-reported version (r = 0.51, p < 0.001), and facets of the Kiddy-KINDL parent-reported version (ranging from r = 0.364 to r = 0.60, p < 0.001) and total score (r = 0.71, p < 0.001).Conclusions: The psychometric property of the instrument showed that the Japanese version of the DISABKIDS Smiley can be applied to assess the HRQOL of Japanese children with chronic conditions. Further investigation will be needed to explore the reliability and validity for repeated use of the instrument in clinical practice as an indicator of clinical significance. [ABSTRACT FROM AUTHOR]

Background: Ninety-eight percent of children needing palliative care live in low- and middle-income countries (LMICs), and almost half of them live in Africa. In contrast to the abundance of data on populations in high income countries, the current data on populations in LMICs is woefully inadequate. This study aims to identify and summarize the published literature on the need, accessibility, quality, and models for palliative care for children in LMICs., Methods: A scoping review was performed following the method of Arksey and O'Malley. Systematic searches were conducted on PubMed and Google Scholar using the main keywords, 'children AND palliative care OR terminal care OR hospice OR end of life AND developing countries OR LMICs.' Additional publications were obtained by handsearching. Papers were only included if they reported on the need, accessibility, quality, and models for palliative care for children in LMICs., Results: Fifteen papers met the inclusion criteria for review. Of these, 10 assessed need, seven examined availability and/or accessibility, one assessed quality, and one examined the models. We found an urgent need for palliative care, particularly in the training for health workers and improving poor availability and/or accessibility to palliative care in terms of factors such as medication and bereavement support. The best practice models demonstrated feasibility and sustainability through cooperation with governments and community organizations. The quality of pain management and emotional support was lower in LMICs compared to HICs., Conclusion: Although we found limited evidence in this review, we identified common challenges such as the need for further training for health workers and greater availability of opioid analgesics. While efforts to change the current systems and laws applying to children in LMICs are important, we should also tackle underlying factors including the need to raise awareness about palliative care in public health and improve the accuracy of data collection.