Analysis of the Clinical Factors Affecting the Quality of Life in Children with Hemophilia A

Adwina Nurlita Kusuma Wardhani¹, I Dewa Gede Ugrasena^1*, Mia Ratwita Andarsini¹, Maria Christina Shanty Larasati¹, Andi Cahyadi¹, Ahmad Suryawan¹, Risky Vitria Prasetyo¹, Yunias Setiawati², Putri Khaerani³

Abstract

Background: Utilization of a specified questionnaire to measure the Health-related quality of life (HRQoL) in children with hemophilia is unusual especially in a country with resources limited settings. The objective of this study is to analyze the quality of life (QoL) of children with hemophilia A and the clinical factors that affect them.

Methods: A cross-sectional study was conducted in September 2021. The participants were children with hemophilia A who were registered at the Indonesian Hemophilia Society Association (IHSA) in Surabaya. Inpatients, children with cognitive impairment, mental health disorder, aged 8 to 16 years old and cannot read, and declined to participate are not included. The questionnaires are using Hemophilia-Specific Quality of Life (Haemo-QoL) which have been validated in Bahasa Indonesia. HRQoL was assessed for 3 age groups (I: 4 to 7; II: 8 to 12; and III: 13 to 16 years).

Results: All participants (21 children) were male with a median age of 148 months. More than half (52.4%) of the children had mild hemophilia, followed by moderate hemophilia. The mean total Haemo-QoL score was 38.57 (+9.52). The youngest age group are experienced the highest disturbance in the family dimension, followed by the sports school dimension; children in the second and third age group were impaired in friends and sports school dimension. There was no significant correlation between clinical factors studied and the QoL of children with hemophilia A.

Conclusion: The QoL of the youngest age groups must be prioritized due to susceptibility to the family dimension. Appropriate and prompt treatment plays a major role because the treatment of this disease does not depend on the severity of the patient’s clinical factors.

Keywords

hemophilia; quality of life; Haemo-QoL; children

Cite This Article

Wardhani, A. N. K., Ugrasena, I. D. G., Andarsini, M. R., Larasati, M. C. S., Cahyadi, A., Suryawan, A., Prasetyo, R. V., Setiawati, Y., Khaerani, P. (2022). Analysis of the Clinical Factors Affecting the Quality of Life in Children with Hemophilia A. International Journal of Scientific Advances (IJSCIA), Volume 3| Issue 1: Jan-Feb 2022, Pages 90-97, URL: https://www.ijscia.com/wp-content/uploads/2022/02/Volume3-Issue1-Jan-Feb-No.221-90-97.pdf

Volume 3 | Issue 1: Jan-Feb 2022