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沙特阿拉伯镰状细胞病青少年的健康相关生活质量

Health related quality of life among adolescents with sickle cell disease in Saudi Arabia.

作者信息

Amr Mostafa Abdel-Monhem, Amin Tarek Tawfik, Al-Omair Omar Ahmed

机构信息

Department of Clinical Neuroscience, College of Medicine, King Faisal University-Al Hassa, Kingdom of Saudi Arabia.

出版信息

Pan Afr Med J. 2011;8:10. doi: 10.4314/pamj.v8i1.71057. Epub 2011 Feb 15.

Abstract

INTRODUCTION

Increased life expectancy due to recent medical advances has increased the need to understand more fully the quality of life (QoL) in patients with sickle cell disease (SCD) and factors predicting disease adaptation .The objectives of this study were to assess the impairment of health related quality of life (HRQoL) domains in a sample of Saudi Arabian adolescents with SCD.

METHODS

A non-probability sample composed of Saudi adolescents with SCD (n=180) aged 14-18 years and comparable age and gender matched healthy controls (n=202). Socio-demographics and disease related data were obtained through personal interview with parents/legal guardians and reviewing patients' medical records. Self-administered 'Short Form-36' questionnaire was used to assess HRQoL of the included groups.

RESULTS

HRQoL showed significant deterioration in adolescents with SCD especially in role physical, general health, and bodily pain domains irrespective of the gender, while female adolescents with SCD demonstrated significant deterioration in emotional wellbeing. Those with SCD-complications showed worse scores along the physical, general health, and emotional wellbeing domains. HRQol scores were negatively associated with increasing age, female gender, rural residence, low family income, presence of disease-related complications and frequent hospital admissions as revealed by multivariate regression analysis.

CONCLUSION

Saudi adolescents with SCD experience deterioration along all domains of HRQoL especially the physical. Disease related complications and sociodemographic correlates are significant determinants to worse HRQoL among the included adolescents with SCD.

摘要

引言

由于近期医学进步,预期寿命增加,这使得更全面地了解镰状细胞病(SCD)患者的生活质量(QoL)以及预测疾病适应性的因素变得更加必要。本研究的目的是评估沙特阿拉伯患有SCD的青少年样本中与健康相关的生活质量(HRQoL)领域的损害情况。

方法

一个非概率样本,由年龄在14 - 18岁的沙特患有SCD的青少年(n = 180)以及年龄和性别匹配的健康对照者(n = 202)组成。通过与父母/法定监护人进行个人访谈并查阅患者的病历,获取社会人口统计学和疾病相关数据。使用自我管理的“简短形式 - 36”问卷来评估纳入组的HRQoL。

结果

患有SCD的青少年的HRQoL显示出显著恶化,特别是在角色身体功能、总体健康和身体疼痛领域,无论性别如何,而患有SCD的女性青少年在情绪健康方面表现出显著恶化。患有SCD并发症的青少年在身体、总体健康和情绪健康领域的得分更差。多变量回归分析显示,HRQol得分与年龄增长、女性性别、农村居住、家庭收入低、存在疾病相关并发症以及频繁住院呈负相关。

结论

患有SCD的沙特青少年在HRQoL的所有领域都经历了恶化,尤其是身体方面。疾病相关并发症和社会人口统计学相关因素是纳入的患有SCD的青少年中HRQoL较差的重要决定因素。

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本文引用的文献

1
Emotional, Social, and Behavioral Functioning of Children With Sickle Cell Disease and Comparison Peers.
J Pediatr Hematol Oncol. 2004 Oct;26(10):642-648. doi: 10.1097/01.mph.0000139456.12036.8d.
2
Health-related quality of life differs between adolescent athletes and adolescent nonathletes.
J Sport Rehabil. 2010 Aug;19(3):237-48. doi: 10.1123/jsr.19.3.237.
4
Quality of life of adolescents with cancer: family risks and resources.
Health Qual Life Outcomes. 2010 Jun 28;8:63. doi: 10.1186/1477-7525-8-63.
5
Vaso-occlusive painful events in sickle cell disease: impact on child well-being.
Pediatr Blood Cancer. 2010 Jan;54(1):92-7. doi: 10.1002/pbc.22222.
6
Health-related quality of life in intensively treated young patients with type 1 diabetes.
Pediatr Diabetes. 2009 Sep;10(6):374-81. doi: 10.1111/j.1399-5448.2008.00496.x. Epub 2009 Jan 21.
7
Impact of family income and sickle cell disease on the health-related quality of life of children.
Qual Life Res. 2009 Feb;18(1):5-13. doi: 10.1007/s11136-008-9412-8. Epub 2008 Nov 7.
8
Medical, social, and economic factors associated with health-related quality of life in Canadian children with hydrocephalus.
J Pediatr. 2008 Nov;153(5):689-95. doi: 10.1016/j.jpeds.2008.04.068. Epub 2008 Jun 24.
9
Quality of life of female caregivers of children with sickle cell disease: a survey.
Haematologica. 2008 Apr;93(4):588-93. doi: 10.3324/haematol.11610. Epub 2008 Mar 5.
10
Assessment of children's health-related quality of life in the United States with a multidimensional index.
Pediatrics. 2008 Jan;121(1):e118-26. doi: 10.1542/peds.2007-0480. Epub 2007 Dec 3.

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