Abstract
Background: Hemophilia is a rare inherited disorder associated with abnormal repeated bleeding and debilitating joint pain due to deficiency in coagulating factors VIII and IX. This study aimed to provide an updated account on the health-related quality of life (HRQoL) in children with hemophilia in Afghanistan.
Methods: This cross-sectional study included 65 randomly selected hemophiliacs out of 350 children registered with the Afghanistan Hemophilia Patient Association (AHPA). The patients were 8–16 years old and voluntarily entered the study. Data were collected through a demographic questionnaire and a Persian version of Haemo-QoL Questionnaire (short version) for children aged 8-16 years.
Results: The patients’ age averaged 12.9 ± 3.9 years with a mean QoL score of 75.9 ± 17.4. The patients were suffering from hemophilia A, mostly the severe type (80%). They were born to low income families (95 %) with high illiteracy rates (>50%) and hemophilia family history (90%). Spearman test showed a significant correlation between age and QoL scores (r = 0.8, P = 0.02). One-way ANOVA indicated no significant difference between QoL scores of patients categorized based on hemophilia severity (P = 0.2, F = 1.3), family incomes (P = 0.9, F = 0.01) and parents’ levels of education (P = 0.2–0.4, F = 0.82–1.3). The Cronbach alpha for the instrument was 0.82.
Conclusion: Regardless of hemophilia severity, Family and Sports were the most impaired domains of QoL. Herein, we have presented the first reliable and updated data on hemophiliacs’ demographic characteristics and their quality of life in Kabul.