Impact of Hemophilia on Health-Related Quality of Life in Pediatric Population | ||
| The Egyptian Journal of Hospital Medicine | ||
| Article 128, Volume 85, Issue 1, October 2021, Pages 3407-3412 PDF (809.96 K) | ||
| Document Type: Original Article | ||
| DOI: 10.21608/ejhm.2021.199590 | ||
| Authors | ||
| Ishtaiwi Elbahlul Ishtaiwi* ; Nelly Raafat Abdelfatah; Mervat Atfy Mohammed; Osama Rushdy Elsafy | ||
| Abstract | ||
| Background: The health-related quality of life (HRQoL) of patients with hemophilia is negatively affected by both the disease and treatment. Recurrent bleeding and resulting complications such as joint and muscle damage, and pain and disability, can significantly affect patients’ HRQoL. Objective: This study aimed to improve the current status of health related quality of life (HR-QOL) in pediatric population with hemophilia using an Arabic version of (EQ-5D-5L and EuroQoL Egypt) questionnaire. Patients and 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 July 2021. Patients were divided equally into 2 groups; group I included 24 children from (4 to 10 years) had hemophilia A and Group II 24 children from (11 to 16 years) 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%), which reflects 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. | ||
| Keywords | ||
| Chronic pain; Hemophilia; Pain management; Patient adherence; Prophylaxis | ||
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