Evaluation of The Quality of Life in Children with Haemophilia and Their Caregivers

Abstract

Background: Congenital haemophilia primarily affects males. Haemophilia A or B is caused by mutation of clotting factor genes on X chromosome. Objective: The aim of the current study is to assess quality of life of children with haemophilia. Patients and methods: A cross sectional comparative study was conducted at Hematology Clinic at El-Helal Hospital and Sohag University Hospital on 50 children with haemophilia.Results: Most patients had joint bleeding and most of them were satisfied about their quality of life (QoL). Most of patients were able to do homework completely, work well and get around. Most of patients had difficulties annoyance and difficulties effect on lifestyle. Most patients never had a depression due to the haemophilia. Most children like school and had friends which made with future plans and never feared from the future. Most patients could perform muscle activities but some of them felt upset going to hospital. Conclusion: Haemophilia has effect on studied cases health-related quality of life (HRQOL). The severity of the disease, bleeding frequency, rate of joint bleeding, financial burden, & therapy all have impact on haemophilia HRQoL. Routine haemophilia care should contain psychological assessment & caregiver support, which should be measured using result measures that account for both HRQoL and caregiver burden.