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卡塔尔14至18岁重型β地中海贫血(TM)青少年的生活质量

Quality of life among adolescents aged 14 to 18 years with Beta-Thalassemia Major (TM) in Qatar.

作者信息

Nashwan Abdulqadir J, Yassin Mohamed A, Babu Ganga Devi J, Nair Sindhumole L K, Libo-On Izette L, Hijazi Hothaifah A, De Sanctis Vincenzo, Soliman Ashraf

机构信息

Nurse Research Scientist, Medical Oncology/Hematology Department, National Center for Cancer Care & Research - Hamad Medical Corporation, Doha, Qatar;.

出版信息

Acta Biomed. 2018 Feb 16;89(2-S):16-26. doi: 10.23750/abm.v89i2-S.7083.

Abstract

BACKGROUND

Thalassemia  is a heterogeneous group of inherited disorders of hemoglobin synthesis. It is a common disease in Mediterranean, Southeast Asia, Indian subcontinent, and Middle East countries, including Qatar.

PURPOSE

The aim of this study was to assess the quality of life (QOL) among patients aged 14 to 18 years with thalassemia major (TM) in Qatar and correlates their QOL with bio-demographic data of the patients compared to healthy controls.

MATERIALS AND METHODS

This cross-sectional study measured the QOL in adolescents with thalassemia major who were attending ambulatory units in a tertiary hospital in Qatar. Forty children and adolescents with TM and 40 healthy participants were enrolled in the study. Forty-two (52.5%) participants were males and 38 (47.5%) females. Data were collected utilizing PedsQLTM 4.0 generic core scale and were analyzed using the appropriate statistical method.

RESULTS

Children with TM had significantly lower and more variable overall quality of life score (69.1 ± 16.8) compared to healthy matched children (77 ± 12.8), (p <0.001). Both groups were not different from the physical, emotional, and social domains. Thalassemic  adolescents had also a significantly lower school performance.

CONCLUSIONS

TM adversely affects the QOL of children and adolescents and this necessitates applying more efforts to help them improve and achieve a desirable quality of life. Patients with TM need more attention in schools that can be accomplished by implementing a special program for their management that needs a mutual collaboration between Ministry of Public Health (MoPH) and Ministry of Education (MoE) in Qatar.

摘要

背景

地中海贫血是一组血红蛋白合成遗传性疾病的异质性群体。它在地中海地区、东南亚、印度次大陆以及包括卡塔尔在内的中东国家是一种常见疾病。

目的

本研究旨在评估卡塔尔14至18岁重型地中海贫血(TM)患者的生活质量(QOL),并将他们的生活质量与患者的生物人口学数据相关联,同时与健康对照组进行比较。

材料与方法

这项横断面研究测量了在卡塔尔一家三级医院门诊就诊的重型地中海贫血青少年的生活质量。40名患有TM的儿童和青少年以及40名健康参与者被纳入研究。42名(52.5%)参与者为男性,38名(47.5%)为女性。使用儿童生活质量量表4.0通用核心量表收集数据,并采用适当的统计方法进行分析。

结果

与健康匹配儿童(77±12.8)相比,患有TM的儿童总体生活质量得分显著更低且更具变异性(69.1±16.8),(p<0.001)。两组在身体、情感和社会领域没有差异。重型地中海贫血青少年的学业成绩也显著更低。

结论

TM对儿童和青少年的生活质量有不利影响,这就需要付出更多努力来帮助他们改善并实现理想的生活质量。患有TM的患者在学校需要更多关注,这可以通过实施一项针对他们管理的特殊项目来实现,该项目需要卡塔尔公共卫生部(MoPH)和教育部(MoE)之间的相互协作。

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本文引用的文献

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Quality of Life in Children with Thalassemia and their Caregivers in India.印度地中海贫血患儿及其照顾者的生活质量
Indian J Pediatr. 2017 Mar;84(3):188-194. doi: 10.1007/s12098-016-2267-z. Epub 2016 Dec 7.
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Beta-thalassemia.β-地中海贫血。
Genet Med. 2010 Feb;12(2):61-76. doi: 10.1097/GIM.0b013e3181cd68ed.

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