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首页> 外文期刊>Sao Paulo Medical Journal >Quality of life among Iranian patients with beta-thalassemia major using the SF-36 questionnaire
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Quality of life among Iranian patients with beta-thalassemia major using the SF-36 questionnaire

机译：使用SF-36问卷调查伊朗重度β地中海贫血患者的生活质量

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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 iron-chelating 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.
机译：背景与目的重型β地中海贫血（β-TM）患者会遇到身体，心理和社会问题，从而导致生活质量（QoL）下降。此处的目的是使用Short-36（SF-36）问卷来测量β-TM患者的健康相关QoL及其决定因素。设计与设置伊朗南部设拉子医科大学血液学研究中心的横断面研究。方法随机抽取101例β-TM患者。记录参与者的人口统计资料和疾病特征后，要求他们填写SF-36问卷。评价了临床和人口统计学因素与QoL评分的相关性。结果平均年龄为19.52±4.3岁（范围12-38）的男44例，女57例。从疼痛（P = 0.041）和情感角色（P = 0.009）两个方面来看，女性的得分明显低于男性。较低的收入，对铁螯合疗法的依从性差以及合并症的存在与较低的SF-36得分显着相关。在多变量分析中，还发现这些因素是SF-36评分较差的决定因素。结论我们表明，疾病并发症的存在，对铁螯合疗法的依从性差和经济状况不佳是β-TM患者QoL恶化的预示因素。预防和适当处理疾病相关并发症，增加患者对合并症管理的重要性的认识以及对铁螯合疗法的更好依从性以及社会心理和经济支持，可以帮助这些患者更好地应对这种慢性疾病。

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