title: Health-related quality of life in children with chronic immune thrombocytopenia in China.
abstract: BACKGROUND
  The concept of health-related quality of life (HRQoL) was brought up decades ago and has been well utilized in many different areas. Regarding immune thrombocytopenia (ITP) management, much work has been done to emphasize the necessity of taking HRQoL into consideration. However, data on HRQoL of children with chronic ITP remain rare.
  
  
  METHODS
  This is a cross-sectional study. Children with chronic ITP aged from 2 to 18 and their parents were recruited. Participants completed the Pediatric Quality of Life Inventory™ (PedsQL™) and Kids' ITP Tools (KIT) questionnaires at only one time. The Pearson's correlation was examined between these measures for the pooled samples.
  
  
  RESULTS
  A total of 42 families participated. Mean child self-report scores of KIT and PedsQL™ were 78.60 (SD = 12.40) and 85.13 (SD = 14.12), respectively, corresponding to parent proxy report scores, which were 73.40 (SD = 19.96) and 85.10 (SD = 13.56), respectively. Mean score of KIT parent impact report was only 40.39 (SD = 19.96). Significantly higher KIT scores (self-report and parent proxy) were observed in children with PLT more than 30 × 10*9/L compared to others, and this difference was even more noticeable in the PedsQL™ parent proxy report group (p < 0.001). As with intravenous immunoglobulin, the statistics difference appeared only in KIT child self-report group (p = 0.03), while for bone marrow examination, the difference appeared only in PedsQL™ parent proxy report group (p = 0.01). A negative relationship was apparent between duration of disease and scores. Gender and use of corticosteroids had no impact on the KIT and PedsQL™ scores here. Internal consistency reliability was demonstrated with Cronbach's alpha for all scales above the acceptable level of 0.89 (range from 0.88 to 0.97). There was a substantial concordance (p < 0.001) between the child and parent proxy scores (ICC for KIT is 0.59, ICC for PedsQL™ is 0.85). Meanwhile, KIT scores are correlated with PedsQL™ (r = 0.75 for child self report, r = 0.61 for parent proxy report).
  
  
  CONCLUSIONS
  ITP affects HRQoL of children and parents. Parents are much more concerned with the disease than their children, which seriously influence their HRQoL as a result. The cross-culture translated KIT is reliable and valid with acceptable correlation to the PedsQL™. KIT provides valuable information of childhood ITP and will be a reliable outcome measure for further clinical research on HRQoL.
authors.affiliation: Department of Hematology and Oncology, Nanjing Children's Hospital Affiliated to Nanjing Medical University, Nanjing, China.
authors.forename: Heng
authors.initials: H
authors.lastname: Zhang
authors.affiliation: Department of Hematology and Oncology, Children's hospital of Hebei province, Shijiazhuang, China.
authors.forename: Li
authors.initials: L
authors.lastname: Wang
authors.affiliation: Department of Hematology and Oncology, Children's hospital of Hebei province, Shijiazhuang, China.
authors.forename: Meijie
authors.initials: M
authors.lastname: Quan
authors.affiliation: Department of Hematology and Oncology, Nanjing Children's Hospital Affiliated to Nanjing Medical University, Nanjing, China.
authors.forename: Jie
authors.initials: J
authors.lastname: Huang
authors.affiliation: Department of Hematology and Oncology, Nanjing Children's Hospital Affiliated to Nanjing Medical University, Nanjing, China.
authors.forename: Peng
authors.initials: P
authors.lastname: Wu
authors.affiliation: Department of Hematology and Oncology, Nanjing Children's Hospital Affiliated to Nanjing Medical University, Nanjing, China.
authors.forename: Qin
authors.initials: Q
authors.lastname: Lu
authors.affiliation: Department of Hematology and Oncology, Nanjing Children's Hospital Affiliated to Nanjing Medical University, Nanjing, China. fyj322@189.cn.
authors.forename: Yongjun
authors.initials: Y
authors.lastname: Fang
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D002681:China; D002908:Chronic Disease / Q000523:psychology*; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D011594:Psychometrics; D016553:Purpura, Thrombocytopenic, Idiopathic / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D015203:Reproducibility of Results; D057566:Self Report; D011795:Surveys and Questionnaires
keywords: Health RELATED QUALITY OF life (HRQoL); Immune thrombocytopenia (ITP); The Kids’ITP Tools (KIT); The pediatric quality of life inventory™ (PedsQL™)