Health-Related Quality of Life in Egyptian Children and Adolescents with Hemophilia A

作者:Tantawy Azza A G*; Von Mackensen Sylvia; El Laboudy Mohammed A M; Labib Jonair H; Moftah Faten; El Telbany M**** A S; Mansour Wesam A A
来源:Pediatric Hematology and Oncology, 2011, 28(3): 222-229.
DOI:10.3109/08880018.2010.535116

摘要

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.</.

  • 出版日期2011-4