Abstract
Hemophilia in children adversely affects both their psychological as well as their physical health. It is important to understand more about the quality of life (QoL) in this patient population. The aim of this study was to assess health-related QoL of children with hemophilia in Bali. A cross sectional study was carried out on children with hemophilia in Bali. Data on the quality of life was collected through questionnaires using PedsQL Generic Core Scales version 4.0 inventory. Independent t test was used to analysis data. Child reports showed mean score on each domain function (physical, emotional, social and school function) in hemophilia group compared to healthy children group were 71.8 vs 97.9, 81.4 vs 94.5, 85.0 vs 97.5, and 73.1 vs 94.5, respectively. Parent-proxy reports showed mean scores on each domain function (physical, emotional, social, and school function) in hemophilia group compared to healthy children group were 73.3 vs 97.3, 79.5 vs 94.5, 80.2 vs 97.5, and 67.4 vs 89.8, respectively. Total PedsQL score in hemophilic children and healthy group showed a significant difference in both reports (child report; p<0.05, with the mean difference was -18.7 with 95% CI of -25.9 to -13.6 and parent-proxy report; p<0.05 the mean difference was -19.8 with 95% CI of -25.9 to -13.5). Hemophilia has a negative impact on the children’s daily life. Hemophilia group reported poor quality of life as regards the physical, emotional, social, school functioning domains, and total quality of life than healthy children group.
Highlights
Hemophilia is a rare, chronic, the hereditary bleeding disorder caused by a defective factor VIII or factor IX, leading to impaired clotting characterized by spontaneous bleeding and excessive bleeding after surgery or trauma [1]
Children with severe hemophilia have frequent, spontaneous bleeding episodes that usually involve major joints, muscles, or soft tissues and may lead to residual morbidity. These morbidity indicates that hemophilic children had a diminished quality of life [5, 7]
Child reports showed mean score on each domain function in hemophilia group compared to healthy children group were 71.8 vs 97.9, 81.4 vs 94.5, 85.0 vs 97.5, and 73.1 vs 94.5, respectively
Summary
Hemophilia is a rare, chronic, the hereditary bleeding disorder caused by a defective factor VIII or factor IX (plasma clotting factor), leading to impaired clotting characterized by spontaneous bleeding and excessive bleeding after surgery or trauma [1]. It is an X chromosomelinked resessive, inherited disease primarily affecting males [2]. Children with severe hemophilia have frequent, spontaneous bleeding episodes that usually involve major joints, muscles, or soft tissues and may lead to residual morbidity These morbidity indicates that hemophilic children had a diminished quality of life [5, 7]
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