THE EFFECT OF HEMOPHILIA ON HEALTH RELATED QUALITY OF LIFE IN EGYPTIAN CHILDREN

Abstract

Background: Hemophilia can have a huge negative impact not only on the physical health but also on the
psychological, economic and social well-being of the affected children and their family. This study aimed to
study the effect of Hemophilia on Health related Quality of Life in Egyptian Children using an Arabic version of
(EQ-5D-5L and EuroQoL Egypt) questionnaire. Methods: This study was carried out during outpatient visits in
the Department of Pediatrics Hematology and Oncology Unit at Zagazig University Children Hospital on 48
cases ranged from 4-16 years during the period from January 2021 to August 2021 on 48 patients, patients were
divided equally into 2groups group I included 24 children from (4 to 10 years) had had hemophilia A and Group
II 24 children from (11 to16 years) had had hemophilia B. Results: In our study , It was found that most frequent
manifestation in younger patients were hemarthrosis (70.8%) followed by epistaxis (62.5%) and bleeding after
circumcision (60.4%) , while in older patients , most frequent manifestation were hemarthrosis (87.5%) followed
by bleeding after circumcision (75%) that reflect bad quality of life in older age group (10-16 years) which was
attributed to frequent bleeding events and its complication. Conclusions: Subscale impairments, severity of
hemophilia, barriers to hemophilia care, presence of support groups are factors that significantly affect and
predict the QOL of Egyptian children with hemophilia. Addressing these concerns may amplify their
understanding of the disease and further improve their quality of life