Health-related quality of life among thalassemia patients in Bangladesh using the SF-36 questionnaire

Abstract

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.

Health‐related quality of life with standard and curative therapies in thalassemia: A narrative literature review

“…Anxiety‐depression, self‐efficacy, perceived barriers, knowledge, enabling factors, and reinforcing factors were associated with HRQOL, with anxiety‐depression and perceived barriers being negative predictors and health‐promoting lifestyle being a positive predictor 37 . Male thalassemia patients reported higher body pain and physical summary than female patients 32 . Factors impacting lower SF‐36 scores included lower income, 32 older age, 19 chronic pain, 19 high blood transfusion status, 19,32 disease severity, 32 presence and severity of heart failure, 28 comorbidities, 32 and medical expenses 32 .…”

“…Of these, 250 met the timeline of publication in the last 5 years. These articles were abstract and full‐text screened, ultimately yielding 31 included studies 18–48 . The results of this literature review are provided in the PRISMA flowchart in Figure 1.…”

“…37 Male thalassemia patients reported higher body pain and physical summary than female patients. 32 Factors impacting lower SF-36 scores included lower income, 32 older age, 19 chronic pain, 19 high blood transfusion status, 19,32 disease severity, 32 presence and severity of heart failure, 28 comorbidities, 32 and medical expenses. 32 Splenectomy was not seen to impact HRQOL in the physical and mental health domains, 26 but did lower vitality scores.…”

“…32 Factors impacting lower SF-36 scores included lower income, 32 older age, 19 chronic pain, 19 high blood transfusion status, 19,32 disease severity, 32 presence and severity of heart failure, 28 comorbidities, 32 and medical expenses. 32 Splenectomy was not seen to impact HRQOL in the physical and mental health domains, 26 but did lower vitality scores. 19 Factors affecting HRQOL on the WHOQOL-BREF form included having days with mental issues, financial status, education level, ethnic status, and marital status.…”

Safe Marriage for Thalassemia Prevention: The Gap Between Knowledge and Practices among Bangladeshi University Students

“…Bangladesh is situated in the South Asian region with a population of over 160 million individuals. Approximately 10 to 19 million individuals in this nation, comprising 6 to 12 percent of the total population, carry a thalassemia gene 11,[18][19][20] . According to estimates provided by the World Health Organization (WHO), approximately 3% of the populace, numbering at 3.6 million individuals, harbors β-thalassemia, while 4% (equating to 4.8 million) of the population carries hemoglobin E (HbE) within Bangladesh 13,21,22 .…”