Analysis of the Quality of Life in Children and Their Parents with Immune Thrombocytopenia in China

In this study, we assessed the health-related quality of life (QoL) in children with immune thrombocytopenia (ITP) and their parents in China using a disease-specific QoL measure, the Kids' ITP Tools (KIT). Forty-three Children less than 18 years of age with newly diagnosed ITP and their parents were recruited to complete the KIT study. The children’s version of the KIT consisted of 26 items which divided into 5 domains: treatment side effects, intervention-related, disease-related, activity-related, and family-related concerns. Parental version of KIT consisted of 26 items which divided into 6 domains: diagnosis-related, monitoring-related, child’s restricted activity-related, daily life-related, disease outcome, and emotional impact. Each item was rated on a 6-point Likert scale from 1 (not at all) to 6 (a great deal). A high score represented a high concern level. Scores for the individual domains were summed to yield a total KIT score. The reliability of KIT was found to be high in assessing QoL of children with ITP and their parents in China (children’s version: Cronbach’s a=0.933, parents’ version: Cronbach’s a=0.905). Parent KIT scores was significantly higher than child KIT scores, (31.46±14.58）vs（79.05±14.99）Z=7.625，P=0.000. Which suggested that QoL of parents was significantly lower than children’s. Among the children KIT, the highest mean score was noted in the “intervention-related” (1.92±1.30) and “activity related (1.82±1.47)”. Among the parents KIT, the highest mean score was noted in the “emotional impact（4.88±0.97)” and “disease outcome (4.78±1.01)”; (3) The KIT scores for different age groups of children with ITP were significantly different which showed that the older the children were, they cared for more and worried more about the disease. But the KIT scores for parents were no different in different age groups, which suggested that whatever their children are old or young, Chinese parents worried about ITP disease in the same degree. The QoL of children with ITP and their parents were remarkably lower in Chinese, especially for parents. The cross-culturally translated KIT was a valid and reliable disease-specific measure of health-related quality of life for children with ITP. KIT could be used as an tool in clinical trials and management of childhood ITP.