Quality of life among Iranian patients with beta-thalassemia major using the SF-36 questionnaire

Abstract

CONTEXT AND OBJECTIVE: Patients with beta-thalassemia major (β-TM) experience physical, psychological and social problems that lead to decreased quality of life (QoL). The aim here was to measure health-related QoL and its determinants among patients with β-TM, using the Short Form-36 (SF-36) questionnaire. DESIGN AND SETTING: Cross-sectional study at the Hematology Research Center of Shiraz University of Medical Sciences, in southern Iran. METHODS: One hundred and one patients with β-TM were randomly selected. After the participants' demographics and disease characteristics had been recorded, they were asked to fill out the SF-36 questionnaire. The correlations of clinical and demographic factors with the QoL score were evaluated. RESULTS: There were 44 men and 57 women of mean age 19.52 ± 4.3 years (range 12-38). On two scales, pain (P = 0.041) and emotional role (P = 0.009), the women showed significantly lower scores than the men. Lower income, poor compliance with iron-chelating therapy and presence of comorbidities were significantly correlated with lower SF-36 scores. These factors were also found to be determinants of worse SF-36 scores in multivariate analysis. CONCLUSIONS: We showed that the presence of disease complications, poor compliance with ironchelating therapy and poor economic status were predictors of worse QoL among patients with β-TM. Prevention and proper management of disease-related complications, increased knowledge among patients regarding the importance of managing comorbidities and greater compliance with iron-chelating therapy, along with psychosocial and financial support, could help these patients to cope better with this chronic disease state. RESUMO

Comparison of Blood Transfusion Plus Chelation Therapy and Bone Marrow Transplantation in Patients with ??-Thalassemia: Application of SF-36, EQ-5D, and Visual Analogue Scale Measures

“…The patients in our study had lower RE function compared to other dimensions. This is consistent with the results of Safizadeh et al 19 and Khani et al 8 Moreover, the mean of physical and mental dimensions in the present study were similar to those reported by Mantovani et al, 11 but lower than those reported by Haghpanah et al 18 In addition, we found that the patients' functionality in almost all the dimensions decreased with age. With increasing age as well as physical problems and functional limitation, patients encounter other problems such as extending family size, continuing education, and finding a good job, which will result in various psychological problems.…”

“…8,16 The mean of this dimension in Safizadeh et al 19 was similar to our study, but RE was not the weakest dimension in their study. Contrary to these, the best function of RE were seen in Baraz Pordanjani's study, 17 and Haghpanah et al 18 showed that it has the greatest effect after physical functioning. The patients in our study had lower RE function compared to other dimensions.…”

“…3,8,[16][17][18][19][20] This study is the first to investigate and compare QoL in patients receiving blood transfusion and bone morrow transplantation. Iran is one of the pioneers in using BMT for β-thalassemia patients, 25 and thus this study can be remarkable.…”

“…The average SF-36 scores of BTIC patients suggested that these patients had the highest physical function, which is similar to the results of similar studies conducted in Iran. 8,[16][17][18][19][20] Furthermore, in a study by Yengil et al, 28 the BP dimension took the highest score after the SF dimension. Based on the results of this study, RE had the weakest function among other dimensions, which is consistent with other studies done in Iran.…”

“…14,15 One of the most important issues in economic evaluation is measuring and evaluating different aspects of a patient's HRQoL. 15 Since all studies on HRQoL in β-thalassemia patients of Iran have focused on those who use blood transfusion, 3,8,[16][17][18][19][20] we decided to compare HRQoL in patients that use blood transfusion plus iron chelation (BTIC) therapy and those who have had bone marrow transplantation (BMT) using 2 different multiattribute quality of life (QoL) scales. In addition, we tried to assess the effects of different socio-economic characteristics on HRQoL.…”