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Front Pediatr


Health-related quality of life in hemoglobinopathies: A systematic review from a global perspective.


Rodigari F, Brugnera G, Colombatti R
Front Pediatr. 2022; 10:886674.
PMID: 36090573.


Sickle cell disease (SCD) and thalassemia are inherited blood disorders, which can lead to life-threatening events and chronic organ damage. Recent advances in treatments have increased life expectancy, and hemoglobinopathies have become chronic illnesses with social and emotional impairments. Thus, health-related quality of life (HRQOL) assessment has a fundamental role in disease management and treatment, and generic and disease-specific questionnaires are reliable and validated measures to estimate disease burden. The heterogeneous distribution of treatment opportunities worldwide influences physical, social, and emotional disease perception.