Reformulating the common-sense model of self-regulation for hemoglobinopathies primary prevention

Abstract Hemoglobinopathies, the most common genetic disorders in humans, result from hemoglobin abnormalities. Sickle cell disease and thalassemia are notable examples, posing significant public health challenges from the Mediterranean basin to China. In low-income countries, over 90% of children with sickle cell disease do not survive to adulthood, highlighting the urgent need for effective primary prevention. The common-sense model of self-regulation (CSM) is a theoretical framework that explores how individuals perceive, interpret, and manage their health conditions. It emphasizes the role of cognitive and emotional representations in guiding health-related behaviors and has been extensively used to understand self-management and treatment adherence in chronic diseases among adults. However, its application in the primary prevention of hereditary diseases remains unexplored. In this study, we apply Fawcett's framework to analyze and evaluate the CSM's potential in the primary prevention of hemoglobinopathies (HPP). We propose a novel approach that integrates health education about hemoglobinopathies and self-regulation strategies for managing the risks of sickle cell disease and thalassemia.