title: Health-related quality of life in Egyptian children and adolescents with hemophilia A.
abstract: 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.
authors.affiliation: Ain Shams University, Cairo, Egypt. azatantawy@hotmail.com
authors.forename: Azza A G
authors.initials: AA
authors.lastname: Tantawy
authors.forename: Sylvia Von
authors.initials: SV
authors.lastname: Mackensen
authors.forename: Mohammed A M
authors.initials: MA
authors.lastname: El-Laboudy
authors.forename: Jonair H
authors.initials: JH
authors.lastname: Labib
authors.forename: Faten
authors.initials: F
authors.lastname: Moftah
authors.forename: Manal A S
authors.initials: MA
authors.lastname: El-Telbany
authors.forename: Wesam A A
authors.initials: WA
authors.lastname: Mansour
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003695:Delivery of Health Care; D004534:Egypt; D005240:Feasibility Studies; D005260:Female; D006304:Health Status; D006467:Hemophilia A / Q000523:psychology* / Q000628:therapy; D006801:Humans; D008297:Male; D011788:Quality of Life / Q000523:psychology*; D011795:Surveys and Questionnaires