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使用SF-36问卷评估伊朗重型β地中海贫血患者的生活质量。

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

作者信息

Haghpanah Sezaneh, Nasirabadi Shiva, Ghaffarpasand Fariborz, Karami Rahmatollah, Mahmoodi Mojtaba, Parand Shirin, Karimi Mehran

机构信息

Hematology Research Center, Shiraz University of Medical Sciences, Iran.

出版信息

Sao Paulo Med J. 2013;131(3):166-72. doi: 10.1590/1516-3180.2013.1313470.

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 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.

摘要

背景与目的 重型β地中海贫血(β-TM)患者会经历身体、心理和社会问题,这些问题会导致生活质量(QoL)下降。本研究旨在使用简短健康调查问卷(SF-36)来测量β-TM患者的健康相关生活质量及其决定因素。

设计与地点 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 随机选取101例β-TM患者。记录参与者的人口统计学和疾病特征后,要求他们填写SF-36问卷。评估临床和人口统计学因素与生活质量得分的相关性。

结果 共有44名男性和57名女性,平均年龄19.52±4.3岁(范围12 - 38岁)。在疼痛(P = 0.041)和情感角色(P = 0.009)两个维度上,女性得分显著低于男性。收入较低、铁螯合治疗依从性差和存在合并症与较低的SF-36得分显著相关。在多变量分析中,这些因素也被发现是SF-36得分较差的决定因素。

结论 我们表明,疾病并发症的存在、铁螯合治疗依从性差和经济状况不佳是β-TM患者生活质量较差的预测因素。预防和妥善管理与疾病相关的并发症、提高患者对合并症管理重要性的认识、更好地依从铁螯合治疗,以及心理社会和经济支持,有助于这些患者更好地应对这种慢性疾病状态。

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