Quality of life and thalassemia in India: A scoping review

ABSTRACT In recent years, a multitude of studies have been conducted to investigate the assessment of quality of life (QoL) among individuals affected by thalassemia. This scoping review aimed to examine the existing knowledge regarding the QoL and its associated factors among individuals with thalassemia in India. Databases, such as PubMed, SCOPUS, Web of Science, and the Preferred Reporting Items for Systematic Review and Meta-Analysis Extension for Scoping Reviews (PRISMA-ScR) guidelines, were searched. A total of nine articles were included in the review. The included studies mainly investigated children. The Pediatric Quality of Life Inventory (PedsQL) is the most common instrument used most often. Overall, the research findings indicate that individuals who underwent blood transfusion exhibited a lower QoL than those who did not receive blood transfusion. Additionally, it was observed that children diagnosed with thalassemia reported a lower QoL than adults. Nevertheless, the studies exhibited notable methodological deficiencies that constrained the validity and generalizability of the results. Hence, it is imperative to undertake comprehensive QoL research encompassing all regions of India and various thalassemia populations within the country to bridge this evidentiary void.