Background: Thalassemia is the most prevalent cause of chronic hemolytic anemia and associated with high rates of morbidity and mortality. Its management is demanding, timely and multidisciplinary creating a strain on the patients, their families, and society.
Aim of the work: To study the effect of  the corona virus disease of 2019 (COVID-19) pandemic lockdown on the health-related quality of life (HRQoL) of the children with transfusion-dependent thalassemia.
Subjects and Methods: The HRQoL (child self-report) and (parent proxy-report for those children) questionnaires of the Pediatric Quality of Life Inventory (PedsQL) Measurement Model were used to study the same group of 131 children with transfusion-dependent-thalassemia before and during the-COVID-19 era lockdown and compared them to 200 matched children with their parents as a control group.
Results: 67 (51.1%) males and 64 (48.9%) females, transfusion-dependent thalassemia patients were included in our study. The mean age was 8.28 ± SD3.81 (range 5-18) and 8.94 ±SD 3.78 years at initial assessment and during the lockdown respectively (p=0.0001). in the pre-COVID-19 the score of patients in all the aspects of PedsQL questionnaire was 60.4±22.8 while that of the control group was 97.3±3  (p <0.001). The mean ± SD of total PedsQL score in the patients before COVID-19 was 60.24 ± 22.8 SD and during the lockdown was 55.96±18.3 (p <0.001). The parent proxy-report for those children was lower than that of the patients (p <0.001). Before COVID-19 the least PedsQL 25.22±4.5 and 25.43±7.2 were reported by those on IV deferoxamine, and by older patients (13-18 years) compared to the control group of 97.3±3 (p <0.001 and p <0.00) respectively. During the lockdown the values dropped significantly as reported by the children and their parents (p<0.001).
Conclusion: Transfusion-dependent thalassemia has an alarming negative impact on all aspects of the quality of life of the affected children and their families. This straining negative aspect was accentuated by the COVID-19 lock-down. Multidisciplinary task force to address the emotional, social, and physical perception of children with transfusion- dependent thalassemia and their parents is imperative.