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β-地中海贫血患者的生活质量及相关因素。

Quality of Life and Related Factors in β-Thalassemia Patients.

机构信息

Department of Epidemiology, School of Public Health and Safety, Shahid Beheshti University of Medical Sciences, Tehran, Iran.

Management Center for Transplantation and Special Diseases, Ministry of Health, Tehran, Iran.

出版信息

Hemoglobin. 2021 Jul;45(4):245-249. doi: 10.1080/03630269.2021.1965617. Epub 2021 Aug 19.

Abstract

The β-thalassemias are a group of genetic disorders defined by decreased levels of functional hemoglobin (Hb). In light of pivotal improvements in patient survival, the load of consistent treatment harms patients' quality of life (QOL). This study aimed to determine the QOL in patients with β-thalassemia (β-thal) in Iran and identify associated factors. This cross-sectional study was conducted among 1240 patients with β-thal. Data for this study were obtained from the General, the TranQol (Transfusion-dependent QoL) Standard, and the Multidimensional Scale of Perceived Social Support (MSPSS) questionnaires. The univariate and multivariable linear regression was used in STATA version 14 to identify factors related to QOL. Overall, the QOL score was 103 ± 21.96, and adults had a higher score than children under 15 years old. Emotional health had the highest score (39.96 ± 11.54), and sexual activity in adults (1.87 ± 2.08) and activities related to education in children (10.43 ± 7.46) had the lowest. The multivariable linear regression analysis showed that the age, gender, age of blood transfusion initiation, Hb level, number of underlying diseases, and social support level by family and community significantly impact QOL. In exchange for an increase in comorbidities, patients' QOL decreased by 86.0% [odds ratio (OR) = 0.14, 95% confidence interval (95% CI): 0.04-0.45]. Many factors affecting the QOL can be controlled, so social support, increased Hb levels, regular and timely blood transfusions, and treatment can improve the thalassemia patients' QOL.

摘要

β-地中海贫血是一组由功能性血红蛋白 (Hb) 水平降低定义的遗传性疾病。由于患者生存率的显著提高,持续治疗的负担影响了患者的生活质量 (QOL)。本研究旨在确定伊朗β-地中海贫血 (β-thal) 患者的 QOL,并确定相关因素。这项横断面研究在 1240 名β-地中海贫血患者中进行。本研究的数据来自一般、TranQol(依赖输血的 QOL)标准和多维感知社会支持量表 (MSPSS) 问卷。使用 STATA 版本 14 进行单变量和多变量线性回归,以确定与 QOL 相关的因素。总体而言,QOL 评分为 103±21.96,成人的评分高于 15 岁以下的儿童。情感健康得分最高 (39.96±11.54),而成年人的性行为 (1.87±2.08) 和儿童的与教育相关的活动 (10.43±7.46) 得分最低。多变量线性回归分析表明,年龄、性别、输血起始年龄、Hb 水平、潜在疾病数量以及家庭和社区的社会支持水平显著影响 QOL。为了换取合并症的增加,患者的 QOL 下降了 86.0%[比值比 (OR)=0.14,95%置信区间 (95%CI):0.04-0.45]。许多影响 QOL 的因素是可以控制的,因此社会支持、增加 Hb 水平、定期和及时输血以及治疗可以提高地中海贫血患者的 QOL。

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