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Thalassemia is one of the most common autosomal recessive hereditary blood disorders worldwide, especially in developing countries, including Bangladesh. Thus, this study aimed to determine HRQoL and its determinants of thalassemia patients (TP) in Bangladesh. A cross-sectional survey was performed on 356 randomly selected thalassemia patients. Participants were invited to face-to-face interviews. Descriptive statistics (frequencies and percentages), independent t-test, ANOVA, and multivariate (linear and logistic regression) analysis was performed to analyze the data. Our demographic data showed that among 356 patients, 54% and 46% were male and female, respectively, with an average age of 19.75 (SD = 8.02) years. Most were transfusion-dependent (91%), 26% had comorbidities, and 52% were from low-income families. In the case of HRQoL, male patients showed significantly higher scores of bodily pains and physical health summaries than female patients. Lower income, high blood transfusion status, disease severity, comorbidities, and medical expenses (p < 0.05; CI 95%) are significantly associated with lower SF-36 scores. This study found an association between lower income, blood transfusion, disease severity, comorbidities, as well as medical expenses, and the deterioration of HRQoL among TP. Male patients experienced poorer HRQoL than females. National action plans are required to guarantee the holistic welfare of thalassemia patients.

Background One of the most common autosomal recessive hereditary blood disorders in the world, especially in developing countries like Bangladesh. Patients suffering from this disease face physical, emotional, and social problems that lessen their health-related quality of life (HRQoL). Thus, this study aimed to determine HRQoL and its determinants of Thalassemia patients (TP) in Bangladesh using the Short Form-36 (SF-36) questionnaire. Methods A cross-sectional survey was done on 356 randomly selected TP from the Bangladesh Thalassemia Foundation. Participants were invited to face-to-face interviews. Descriptive statistics (frequencies and % ages), independent t-test, ANOVA, and Multivariate (linear and logistic regression) analysis were performed on the collected data. Results Our demographic data showed that among 356 patients, 54% and 46% were male and female, respectively, with an average age of 17 years. The majority were transfusion-dependent (91 %), with a quarter of the patients (26%) having comorbidities, and half of the patients (52%) were from low-income families. Therefore, the medical expenses per annum for each patient of 60,000 BDT were a real burden for those patients. In the case of HRQoL, male patients showed significantly higher scores of bodily pains and physical health summaries than female patients. Lower income, high blood transfusion status, disease severity, comorbidities, and medical expenses (p < 0.05; CI 95%) are significantly associated with lower SF-36 scores. Conclusions This study found an association between lower income, blood transfusion, disease severity, comorbidities, and medical expenses and the deterioration of HRQoL among TP. Male patients experienced poorer HRQoL compared to their female counterparts. National action plans are required to guarantee the holistic welfare of thalassemia patients.

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