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

Abstract

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