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Background: Thalassemia remains a chronic challenging disease in Thailand, but national prenatal screening along with better treatment and management may have improved health-related quality of life (HRQoL) for pediatric patients. We aimed to measure the HRQoL of transfusion dependent (TDT) and non-transfusion dependent (NTDT) of these pediatric patients at our institute.
Methods: We included all patients 2 – 18 years old, with TDT and NTDT, using the Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL) and the EuroQol Group’s Five Dimensions for Youth (EQ-5D-Y) instruments. Patients and caregivers responded as appropriate for age.
Results: Mean PedsQL total summary scores (TSS) (SD) of child self-reports and parent proxy-reports were 81.00 (10.94) and 78.84 (16.72) from 150 participants. Mean EQ-5D-Y VAS (SD) for children was 89.27 (11.56) and 86.72 (10.62) for parent proxies. The most problematic EQ-5D-Y dimension was “having pain or discomfort”. These scores had significant correlations between child and parental proxy perspectives, as well as between the PedsQL and EQ-5D-Y. An age of 8 - 12 years and oral chelation therapy predicted lower self-reported PedsQL TSS. Parental proxy-report predictors for reduced PedsQL TSS and EQ-5D-Y VAS were primary school education for children, parental proxy secondary school education, Universal Coverage insurance, and TDT.
Conclusion: HRQoL scores of our pediatric thalassemia patients had improved from the previous decade, and these findings may represent our better standard of care. Some sociodemographic and clinical characteristics may present negative impacts on HRQoL.