Haghpanah Sezaneh, Nasirabadi Shiva, Ghaffarpasand Fariborz, Karami Rahmatollah, Mahmoodi Mojtaba, Parand Shirin, Karimi Mehran
Hematology Research Center, Shiraz University of Medical Sciences, Iran.
Sao Paulo Med J. 2013;131(3):166-72. doi: 10.1590/1516-3180.2013.1313470.
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.
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。