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

Abstract

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. Disclosures No relevant conflicts of interest to declare.

Risk Factors and Psychological Analysis of Chronic Immune Thrombocytopenia in Children

“…Children will be upset because of long-term medical examinations, drug use, and in order to avoid bleeding, they cannot participate in activities they love, and cannot play with their classmates. 37 , 38 The results of the EPQ questionnaire showed that the extraversion scores of chronic children were significantly lower than those of normal children. Those with high scores are cheerful, lively, easy-going, optimistic, casual, eager for stimulation and adventure, good at communication, and their behavior is easily affected by impulse; Low scorers are quiet, emotionally stable, good at introspection, rigorous and planned, do not like impulse and adventure, except for close friends, generally speaking less indifferent to people and keeping a certain distance, indicating that chronic diseases cause children with introverted psychological characteristics.…”

First report on health-related quality of life among children with chronic immune thrombocytopenia in Vietnam

“…The HRQoL of children with ITP and their parents were remarkably lower in comparison with the healthy children. 26,27 In Vietnam, research on HRQoL have been paid attention recently, 28,29 however, HRQoL for chronic ITP patients is still lack of in the country. This study aims to evaluate the HRQoL among Vietnamese children with chronic ITP.…”

Re-evaluate the Prognostic Value of Absolute Lymphocyte Count in Pediatric Immune Thrombocytopenia

“…3 Prolonged disease course and long-term use of steroid inevitably affect children's growth and bring great psychological burden to their families. [4][5][6] Therefore, it is important to predict the prognosis early so that treatment modification can be prepared. [7][8][9][10] Recently a meta-analysis 11 including several studies suggested that the levels of absolute lymphocyte count (ALC) were associated with the development of chronic ITP.…”

“…Unfortunately, >20% of the patients can develop chronic ITP that lasts over 12 months 3. Prolonged disease course and long-term use of steroid inevitably affect children’s growth and bring great psychological burden to their families 4–6. Therefore, it is important to predict the prognosis early so that treatment modification can be prepared 7–10.…”