Impact of educational programme regarding chelation therapy on the quality of life for B-thalassemia major children

Abstract

Objectives Thalassemia is the most common genetic disorder in Egypt, with an estimated carrier rate of 9-10%. It is a genetic blood disorder which can be fatal if proper chelation is not received. The introduction of chelating agents capable of removing excessive iron from the body has dramatically increased life expectancy and improved the overall quality of life. The aim of this study was to assess the impact of educational programmes regarding chelation therapy on the quality of life of thalassemic children. Methods The study was carried out at the Mansoura University Children's Hospital in the period between March 2010 and May 2011. It included 173 B-thalassemia children (84 boys and 89 girls) with age ranging between 8-18 years. The researcher used a predesigned interviewing questionnaire to collect data regarding children's knowledge about thalassemia and its management, especially regarding chelation therapy. The paediatric quality-of-life inventory tool (Peds QL 4.0 generic core) was also used to assess the studied children's quality of life. Results There was a significant statistical difference of the studied children's knowledge regarding chelation therapy and their quality of life. Conclusion There was a positive effect of the educational programme in improving children's knowledge score and their quality of life. Application of educational programmes for thalassemic children and their nurses regarding chelation therapy and its importance in preventing thalassemia complications is established.

Refugee children with beta‐thalassemia in Turkey: Overview of demographic, socioeconomic, and medical characteristics

“…A recent study revealed that higher social functioning scores and educatory intervention have been reported in association with higher educational levels of TM patients and resulted in greater effectiveness of chelation therapy and quality of life of TM patients. 24 In this study, we observed that many patients had features of severe BT, such as severe anemia, growth retardation, hepatosplenomegaly, bone marrow expansion, and bone deformities, as originally described by Cooley. 25 In our study group, being underweight and stunted were significantly higher in those older than five years who had been in their country during the war, which may be an indicator of the severity of the conditions.…”

“…We observed that children are mostly fluent in Turkish and act as a translator between their families and the medical staff. A recent study revealed that higher social functioning scores and educatory intervention have been reported in association with higher educational levels of TM patients and resulted in greater effectiveness of chelation therapy and quality of life of TM patients …”

Effect of an Educational Program on Self-efficacy of Adolescents with Thalassemia Major

“…The final form of the Thalassemia Major Knowledge Questionnaire (the modified form) composed of 17 items and the responses were modified to be scored (2) for the complete correct answer, (1) for the incomplete answer, and (0) for wrong answer or don't know response. Knowledge score was considered weak, acceptable and good when total score were less than 13, between 13 to 24 and more than 24 respectively (Shareef & Obaid 2015).…”

Examining the factors affecting quality of life in children and adolescents with Beta-Thalassemia

“…Bütün bunlar eğitim ve danışmanlığı içermektedir. Beta-talasemili çocuklara verilen eğitim yaşam kalitelerini arttırmıştır (30) . Tanı alma yaşı, transfüzyon sıklığı, Hb ve ferritin değerleri, endokrin, işitme, kalp, ve ağız diş sağlığı sorunu olması ile yaşam kalitesi puanları arasında anlamlı bir fark saptanmamıştır (p>0,05).…”