Quality of Life among Paediatric Patients with Transfusion-Dependent Βeta-Thalassemia Major in Sabah, Malaysia
DOI:
https://doi.org/10.31674/mjn.2025.v17isupp1.009Abstract
Background: Thalassaemia is a significant health concern in Malaysia, particularly in Sabah, where prevalence rates are high. This study aims to determine the quality of life (QOL) of paediatric patients with β-thalassaemia major (β-TM) in Sabah and to identify factors associated with the QOL. Methods: A cross-sectional study was conducted at two hospitals between November 2018 and April 2019, including 115 transfusion-dependent β-TM patients aged 8 to 18 years. The Malay version 4.0 of the PedsQLTM questionnaire was used to assess QOL. Paired t-test was used to compare the QOL scores between patients and their parents’ proxy reports. Linear regression analysis was performed to identify factors influencing QOL scores. Results: The mean total QOL summary score was 76.15 (SD 14.5), with the lowest mean score observed in school functioning (64.1). Only the school functioning score was significantly lower (p-value = 0.02) in the parents’ proxy report compared to the patients’ self-report. In multivariable analysis, parental marital status (adjusted β = −10.55, 95% CI −19.38, −1.73, p = 0.02) and the usage of single iron chelation therapy or monotherapy (adjusted β = 10.02, 95% CI 4.05, 16.00, p = 0.001) were significantly associated with the lower total QOL summary score. Conclusion: Thalassaemia negatively impacts patient’s QOL, especially in the school functioning. This study recommended considering QOL as an important factor in the management of transfusion-dependent thalassaemia patients, which includes providing out-of-hours thalassaemia treatment services and implementing nurse-led programmes that offer social support for patients and families.
Keywords:
Beta-thalassemia Major, Paediatric, PedsQL, Quality of Life, HealthDownloads
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