Health Related Quality of Life (HRQoL) and the Factors Affecting it in Children with Hemophilia
摘要
Hemophilia is a chronic illness that is associated with frequent joint bleeds leading to deformity, disability, severe impairment and limitation of activity, causing negative impact on physical, social, economic and psychological well being. This study cross sectional study was carried out with the objective to determine the health related quality of life (HRQoL) of hemophiliac children using the Haemo-QoL questionnaire. A total of 89 hemophiliac children (4–16 years) were enrolled. Among these, 76 (85.39%) children had hemophilia A, while 13 (14.61%) had hemophilia B. Inhibitors were detected in 9 (10.11%) children. The mean Haemo-QoL scores were 52.27 ± 11.72, 47.46 ± 11.68 and 47.75 ± 9.41 in children aged 4–7 years, 8–12 years and 13–16 years, respectively. The family domain had the greatest impairment in HRQoL in the 4–7 years old and 8–12 years old age groups, whereas in the 13–16 years old children, the sports and school domains were the worst affected. A comparison of the Haemo-QoL based on presence or absence of inhibitors revealed statistically significant difference among children aged 13–16 years. Presence of target joints in children aged 8–12 years & 13–16 years was significantly associated with lower health related quality of life. Similarly, a comparison of the Haemo-QoL according to the severity of hemophilia revealed greater impairment among severe hemophilia patients in the 8–12 years and 13–16 years age groups. So to conclude, severity of disease as well presence of target joints and inhibitors had a negative impact on HRQoL. The major contributors to poor HRQoL are physical health, perceived impact on family and inability to participate in school/sports activities.