Assessment of disease knowledge gaps among beta thalassemia major patients and their caregivers

Abstract Background Thalassemia constitutes a major health issue in Egypt. It is associated with significant mortality and morbidity that arise mainly from iron overload secondary to blood transfusions. Methods We conducted this cross-sectional study at Cairo University children hospitals aiming assessing the patients’ their caregivers’ knowledge about thalassemia, identify factors affecting period December 2020 August 2021. Results The included 45 thalassemia patients aged 10–14 years caregivers of who were less than 10 age. A questionnaire was generated an educational script prepared by investigators translated into Arabic language. Thirty-one 44 responded individually, while 15 patient/parent pairs worked on together request. Age ranged 2 14 years, majority males. Disease duration 0 13 following pediatric hematology clinic monthly basis. Candidates showed strong areas related symptoms signs. On other hand, they critical gaps transfusions complications chelation. Patients scored similarly various topics no difference. Gender, consanguinity, similar conditions family frequent follow-up did not affect score participants, though longer illness positively correlated overall scores. Conclusions have chelation therapy transfusion complications.