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Background: Health-related quality of life (HRQoL) has been brought up for decades in haemophilia patients. However, no data to date are available about HRQoL in children with haemophilia using long-term follow up data. This nearly 4-year follow-up study aimed to assess the long-term HRQoL of haemophilia children.Methods: A prospective cohort study among 42 children with haemophilia and their parents was conducted in August 2014 in a children's hospital; follow-up was completed in January 2018. Primary endpoint was the change in patient HRQoL evaluated by Canadian Haemophilia Outcomes-Kids' Life Assessment Tool (CHO-KLAT) from baseline to year 4; secondary endpoint was the impact of bleeding rates, physical activity restriction, financial burden and treatment (prophylaxis vs on-demand treatment) on HRQoL, as well as the impact of treatment on event-free survival.Results: Totally 42 patients (mean age, 5.48[SD, 4.63] years) and 42 parents were included. 38 families completed 4-year follow up. Patients reported a small increase in HRQoL from baseline to year 4. The mean scores of child self-report and parent proxy report of CHO-KLAT at baseline were 60.69 (SD = 20.28) and 61.01 (SD = 12.14), respectively. Scores at follow-up were 64.69 (SD = 13.71) and 65.33 (SD = 15.78), respectively. Haemophilia patients without physical activity restriction, living in urban areas, and receiving prophylactic treatment and home injection, had higher average values for HRQoL scores than the others. Bleeding rates were proportionally negatively correlated with HRQoL. Patients who had received prophylactic treatment had better event-free survival.Conclusions: Haemophilia decreased HRQoL of patients, but this effect weakened after 4 years. HRQoL of children is influenced by severity of haemophilia, bleeding rates, physical activity restriction, financial burden and treatment. Prophylactic treatment is a key factor contributing to event-free survivor prognosis and the optimal form of therapy for childhood haemophilia. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The purpose of this study is to measure Chinese population health related quality of life (HRQoL) using European quality of life (EQ-5D) instrument, to examine the validity of EQ-5D in measuring Chinese population HRQoL, to explore the relationships between EQ-5D and other health determinants, and to display the similarities and differences of HRQoL between the Chinese population and the populations of other countries. The data used in this study includes 2994 respondents whose age are 12?years and older, which is from the 2000 Beijing Household Health Survey. Univariate and bivariate analyses have been used to examine the level of HRQoL and the relationships between HRQoL and other variables. Multi-variate analyses have been used to explore the relationships between the EQ-5D Visual Analogue Scale (VAS) and the EQ-5D five dimension indicators. There are four principal findings from this study. First, the EQ-5D instrument is a valid measure for Chinese HRQoL, but with a significant ceiling effect. Second, Pain/Discomfort and Anxiety/Depression are the major Chinese HRQoL problems and the extents of these problems differ in subgroup populations. Third, typically mean scores are lower for older age group; this is observed at lower ages in the Chinese population than in populations from developed countries. Fourth, Chinese HRQoL has strong association relationship with population socio-economic status (SES), which might imply that issues brought on by the rapid economic transition have both positive and negative impacts on Chinese HRQoL. [ABSTRACT FROM AUTHOR]