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Clinical Burdens of β-Thalassemia Major in Affected Children
Huda Gharaibeh1, Moussa A Barqawi2, Khetam Al-Awamreh3
1Maternal-Child Health and Midwifery Department, Faculty of Nursing, Jordan University of Science and Technology.
Insights
β-thalassemia major (BTM) significantly impacts children, causing facial deformities, infections, and growth delays. Understanding these burdens is key to improving healthcare for BTM patients.
Area of Science:
- Pediatrics
- Hematology
- Genetics
Background:
- β-thalassemia major (BTM) is a severe inherited blood disorder causing anemia.
- Effective healthcare for BTM requires understanding its complications.
Purpose of the Study:
- To identify the clinical burden of BTM from the perspective of affected children.
- To explore the impact of BTM on children's daily lives and health.
Main Methods:
- A descriptive exploratory design was employed.
- A convenience sample of 45 BTM patients and their family members participated.
- Data was collected from a governmental hospital in April-May 2015.
Main Results:
- Facial deformity (86.9%) was the most reported burden, followed by systemic infection (48.8%), growth delay (44.4%), and liver problems (39.9%).
- Patient age correlated with bone pain and facial deformity.
- Blood transfusion frequency was linked to growth delay and bone pain.
Conclusions:
- This study underscores the significant clinical burdens of thalassemia in children.
- Key impacts include physical appearance changes, growth delays, and other health issues.
Background:
β-thalassemia major (BTM) is an inherited blood disorder leading to severe anemia. A better understanding of BTM complications can be considered an important factor in developing effective health care provision.
Method:
A descriptive exploratory design was used to identify the clinical burden of BTM from affected children's perspective. A convenience sample of 45 patients with BTM, accompanied by a family member, was recruited from a governmental hospital during April-May 2015.
Results:
The most reported clinical burden was facial deformity 86.9%, followed by systematic infection (48.8%), growth delay (44.4%), and liver problems (39.9%). Patient age was significantly associated with clinical burdens such as bone pain and facial deformity. The number of blood transfusions received was associated with growth delay and bone pain.
Conclusion:
This study highlights the clinical burdens of thalassemia on affected children, in terms of physical appearance, growth delay and other burdens.
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