Health-related Quality of Life in Pediatric and Adolescent Patients with Transfusion Dependent ß-Thalassemia
DOI:
https://doi.org/10.51985/JBUMDC202248Keywords:
Thalassemia major, Transfusion-dependent, Quality of lifeAbstract
Objective: To evaluate the impact of disease on physical, educational, psychological and social wellbeing of transfusion dependent thalassemia major patients.
Study Design and Setting: A case control study conducted in Thalassemia Centre of Pediatric Ward, PNS Shifa Hospital Karachi for a duration of six months from March 2019 till August 2019.
Methodology: Seventy cases of thalassemia major patients were enrolled along with a control group of hundred patients. The enrolled cases were registered thalassemia patients of pediatric hematology clinic. The controls are healthy, age and sex matched participants and their history was taken to compare with the diseased participants. Peds QL4.0 generic core scale proforma was filled to assess health related quality of life (HRQoL) in these patients.
Results: Mean age of patients was 8.56 ± 4.526 and 7.94 ± 4.528 for controls. The greatest level of difficulty was seen in thalassemia patients in physical functioning, health activities and emotional functioning domains with a score of 9.4 ± 6.85, 9.186 ± 5.724 and 6.4 ± 3.5 respectively. The total score in terms of increasing difficulty was 51.84 ± 21.26 in patients while it was 15.06 ± 10.26 in control group with a significant difference (p = 0.05). There was also significant association of splenectomy with health-related scores.
Conclusion: This study reiterated the impact of blood transfusion, iron chelation and other clinical dependencies of thalassemia major patients on their quality of life. The questionnaire data provided valuable information regarding impact on daily life activities and its difference in comparison to controls
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