الفهرس 
Assessment of health-related quality of life in Egyptian children with chronic hemolytic anemia
AbstractOnly 14 pages are availabe for public view
 |  | from | 246 |  |  |
| | | from | 246 | | |
Abstract
Background: Haemoglobinopathies are the most common monogenic diseases in the world with peculiar prevalence in the Mediterranean. When quality of life is considered in the context of health and disease, it is commonly referred to as health-related quality of life (HRQoL) to differentiate it from other aspects of quality. This cohort prospective study conducted on the Egyptian children with chronic hemolytic anemia (Thalassemia and Sickle cell disease).
Aim of the Study: The aim of this study is to measure the health-related quality of life in pediatric patients with chronic Hemolytic Anemia (Thalassemia and Sickle cell disease), including assessment of the socioeconomic status of their families and to identify the factors that affect their quality of life of the studied patients.
Patients and methods: We assessed the health-related quality of life in (HRQoL), by using PedsQL questionnaire, in two different time zones (before COVID-19 and after COVID-19 pandemic) for the same 200 patients and their parents. 200 Children with their parents, matched age and sex, who came to the general out patients’ clinics with no chronic diseases, were included as a control group (in the pre-COVID-19 era).
Results: The results of our study revealed that health-related quality of life (HRQoL) was significantly lower among the participated patients with chronic hemolytic anemia and their parents than their matched beers. There is a strong negative correlation between the age of the patient and his total QoL score. Beside it, Type of thalassemia (among the enrolled thalassemic patients), the age of diagnosis, age of first blood transfusion, presence of disease-related complications, frequency of hospitalization per year and the administration of chelation therapy were investigated as influential factors in HRQoL, and significant relations were found. But, the socio-economic status of the enrolled patients’ families had no impact on the total HRQoL of those patients. In addition, the health-related quality of life among the patients with chronic hemolytic anemia (in the (post-COVID-19) era was significantly lower than in the (post-COVID-19) era.
Conclusion: The findings of this study highlight the significant negative impact of chronic hemolytic anemia (Thalassemia and Sickle cell disease) and its treatment on HRQOL scores. Major factors affecting the quality of life are related to better control of iron overload and adverse effects of ICTs, prevention of co morbidities, fewer hospital visits and good clinical management. Early diagnosis, regular monitoring, education and financial support are the major areas of intervention to improve the overall quality of life of these children