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全面的患者护理可改善依赖输血的β地中海贫血患者的生活质量。

Comprehensive patient care improves quality of life in transfusion dependent patients with β-thalassemia.

作者信息

Ali Salah S, Tarawah Ahmad M, Al-Hawsawi Zakaria M, Zolaly Mohammed A, Turkustani Waheed

机构信息

Pediatrics Hematology/Oncology Department, Maternity and Children Hospital, PO Box 40110, Al-Madinah Al-Munawarah 41499, Kingdom of Saudi Arabia. Fax. +966 (14) 8641046. E-mail.

出版信息

Saudi Med J. 2015 May;36(5):575-9. doi: 10.15537/smj.2015.5.10442.

Abstract

OBJECTIVES

To investigate levels of quality of life (QOL) among thalassemia patients at the Hereditary Blood Disorders Center in Al-Madinah Al-Munawarah, Kingdom of Saudi Arabia.

METHODS

A cross-sectional study was performed on 43 transfusion dependent thalassemia patients compared with 43 normal subjects, as a control, using the World Health Organization Quality Of Life - Brief questionnaire between May 2012 and September 2012 at the Hereditary Blood Disorders Center, Maternity and Children Hospital in Al-Madinah Al-Munawarah, Kingdom of Saudi Arabia.

RESULTS

Forty-three thalassemia patients were examined, 23 males and 20 females, and compared with 43 peers (control group), 24 males and 19 females. There was no statistical difference between patients and controls for psychological domains (53.4 versus 56.9, p=0.059) and environmental domains (56.6 versus 57.0, p=0.884). Patients had better social QOL than the control group (39.3 versus 31.7, p=0.003), while the control group had better physical QOL (55.4 versus 61.9, p=0.047). Among patients, there was no statistical difference in QOL domains for variables of age, desferroxamine use, serum ferritin level, disease severity, presence of complications; splenectomy status, hepatitis C virus status, or family history.

CONCLUSION

Quality of life in thalassemia patients is similar to the control group particularly social life, though physical health is less. Improvement of patients care from all aspects will improve their QOL. More studies in this field are needed with a bigger sample size.

摘要

目的

调查沙特阿拉伯王国麦地那穆纳瓦拉市遗传性血液疾病中心地中海贫血患者的生活质量(QOL)水平。

方法

2012年5月至2012年9月期间,在沙特阿拉伯王国麦地那穆纳瓦拉市妇幼医院遗传性血液疾病中心,对43例依赖输血的地中海贫血患者与43名正常受试者(作为对照)进行了一项横断面研究,使用世界卫生组织生活质量简表进行调查。

结果

共检查了43例地中海贫血患者,其中男性23例,女性20例,并与43名同龄人(对照组)进行比较,对照组中男性24例,女性19例。患者与对照组在心理领域(53.4对56.9,p = 0.059)和环境领域(56.6对57.0,p = 0.884)方面无统计学差异。患者的社会生活质量优于对照组(39.3对31.7,p = 0.003),而对照组的身体生活质量更好(55.4对61.9,p = 0.047)。在患者中,年龄、去铁胺使用情况、血清铁蛋白水平、疾病严重程度、并发症的存在、脾切除状态、丙型肝炎病毒状态或家族史等变量在生活质量领域无统计学差异。

结论

地中海贫血患者的生活质量与对照组相似,尤其是社会生活方面,尽管身体健康状况较差。从各个方面改善患者护理将提高他们的生活质量。该领域需要更多样本量更大的研究。

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