ITP-QoL questionnaire for children with immune thrombocytopenia: Italian version validation's.

BACKGROUND: The ITP-QoL is a disease-specific questionnaire for the assessment of health-related quality of life (HRQoL) in children with immune thrombocytopenia (ITP) and their parents. The aim of this study was to test the psychometric characteristics of the ITP-QoL in the Italian pediatric population in terms of validity and reliability. PROCEDURE: Children aged 8-16 years with acute or chronic ITP and their parents were recruited in Italy. Participants completed the ITP-QoL together with other patient-reported outcomes (PROs). Reliability was calculated using Cronbach's alpha. Convergent validity was determined by means of the Pearson correlation coefficients. RESULTS: A total of 91 ITP patients, mean age of 12.11 ± 2.47 years, and their parents participated; 61.5% of the patients were female. Two patients had acute ITP and 30.2% had a moderate to severe status of ITP. Cutaneous symptoms were more frequent than mucosal symptoms. Due to item and scale analyses 20 items were deleted from the original ITP-QoL. Internal consistency of the ITP-QoL was found to be good with Cronbach's alpha exceeding α = 0.70 for all but one subscale. Concerning convergent validity "moderate" to "high" negative correlations were found between ITP-QoL and KINDL subscales. The ITP-QoL was able to discriminate between clinical subgroups such as number of days lost at school due to ITP and hospitalization. CONCLUSIONS: Our study was able to demonstrate that the Italian version of ITP-QoL (for children aged 8-16 years) is a valid and reliable instrument for the assessment of HRQoL in children with ITP.

Health-related quality of life in Egyptian children and adolescents with hemophilia A.

Quality of life (QoL) in hemophilia is an important area in hemophilia outcome assessment. The Haemo-QoL instrument is a set of questionnaires to measure QoL in those children. The objectives of this study was to assess health-related quality of life (HRQoL) in Egyptian hemophilic children and adolescents using an Arabic version of the Haemo-QoL questionnaire. Sixty patients with severe hemophilia A were recruited from 2 hemophilia treating centers in Egypt. Assessment of quality of life was done using the Haemo-QoL questionnaire. The scores of HRQoL were found to be for all dimensions widely above 50. It was highly significant in the 3 dimensions (physical health-family-treatment) in different age groups, but it was impaired in the dimension of "physical health" for 2 groups, and in the dimension of "family" for the oldest group, whereas the youngest group had highly impaired scores concerning the "treatment." The HRQoL in this study was not affected by the presence of factor VIII (FVIII) inhibitors. The QoL in hemophilic patients in Egypt needs strenuous efforts from hemophilia care-integrated teams of pediatric hematologists and psychiatrists in order to properly assess and improve QoL.