Health-Related Quality of Life in Thai Children with Thalassemia as Evaluated by PedsQL and EQ-5D-Y: A Single-Center Experience

Mediterranean Journal of Hematology and Infectious Diseases
Phakatip Sinlapamongkolkul, Pacharapan Surapolchai

Abstract

Thalassemia remains a challenging chronic 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. 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. 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 the 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 ...Continue Reading

Software Mentioned

PedsQL
SPSS
SPSS for
AnthroPlus
WHO Anthro
Excel

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