Health-related quality of life of Indonesian children with hemophilia

Introduction: Measuring health-related quality of life (HRQoL) in haemophilia patients provides a comprehensive patient's functional and the impact of the disease and its treatment. Aim: This study aimed to assess the HRQoL of haemophilia children and related factors. Methods: We conducted a cross-sectional study from 6 April 2019 to 29 April 2019. We recruited children aged 8–16 years old who were members of the Yogyakarta Province Branch, Indonesian Haemophilia Society. Children filled in the Indonesian Haemo-QoL short-version questionnaire that consists of nine dimensions, and the score ranges from 0 to 100, in which a higher score shows a higher impartment. Results: Forty-four children participated in this study. The mean age was 11.99 + 2.49. The median age of the first bleeding episode was 5 years, and the median frequency of spontaneous bleeding during the previous year was 13.5. All children received antihemophilic factor (AHF) on-demand; most (81.8) received AHF in the advanced symptoms. The mean total score of HRQoL was 42.7 ± 15.5, with the highest impairment in the family dimension, with a mean score of 68.0 ± 22.3. The severity of haemophilia was significantly correlated with the total score of HRQoL and dimensions of physical health, feeling, view, and family (effect size ranges from 0.30 to 0.42). The frequency of bleeding was significantly related to the total score of HRQoL and the feeling dimension (effect size of 0.47 and 0.34). Conclusion: The HRQoL of our study was lower than in countries where AHF prophylactic is provided. More severe haemophilia and more frequent bleeding significantly lower HRQoL. © 2024 John Wiley & Sons Ltd.