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成人先天性心脏病患者的生活质量:我们已经了解了什么,还有什么需要了解?

Quality of life in adult congenital heart disease: what do we already know and what do we still need to know?

机构信息

Centre for Health Services and Nursing Research, KU Leuven Department of Public Health and Primary Care, Kapucijnenvoer 35, Box 7001, 3000, Leuven, Belgium.

出版信息

Curr Cardiol Rep. 2013 Oct;15(10):407. doi: 10.1007/s11886-013-0407-x.

DOI:10.1007/s11886-013-0407-x
PMID:23955787
Abstract

Quality of life (QOL) is a key outcome in patients with congenital heart disease (CHD) because CHD has become a chronic condition accompanied by lifelong impairments. Recently, published studies on QOL in adults with CHD have reported inconsistent findings. Patients' QOL seems to depend on multiple factors and is not solely determined by their heart defect and various medical or demographic characteristics. For instance, evidence suggests that a strong sense of coherence might be an important pathway to improve QOL. However, studies on QOL and its determinants are characterized by important methodological differences and limitations, making it impossible to draw firm conclusions. To fill the gaps in the current evidence base, longitudinal and international research is needed. Furthermore, the research field on QOL in CHD should move on from observational studies to interventional research to guide health professionals in improving QOL.

摘要

生活质量(QOL)是先天性心脏病(CHD)患者的一个关键结果,因为 CHD 已经成为一种伴随终身损害的慢性疾病。最近,关于成人 CHD 患者生活质量的已发表研究报告结果不一致。患者的生活质量似乎取决于多种因素,而不仅仅取决于他们的心脏缺陷和各种医疗或人口统计学特征。例如,有证据表明,强烈的一致性感可能是改善生活质量的重要途径。然而,生活质量及其决定因素的研究存在重要的方法学差异和局限性,使得不可能得出确凿的结论。为了填补当前证据基础中的空白,需要进行纵向和国际研究。此外,CHD 生活质量研究领域应该从观察性研究转向干预性研究,以指导卫生专业人员改善生活质量。

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本文引用的文献

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Sense of coherence and perceived physical health explain the better quality of life in adolescents with congenital heart disease.心理一致感和感知身体健康状况解释了先天性心脏病青少年更高的生活质量。
Eur J Cardiovasc Nurs. 2013 Oct;12(5):475-83. doi: 10.1177/1474515113477955. Epub 2013 Feb 13.
2
Associations between knowledge of disease, depression and anxiety, social support, sense of coherence and optimism with health-related quality of life in an ambulatory sample of adolescents with heart disease.在患有心脏病的青少年门诊样本中,疾病知识、抑郁与焦虑、社会支持、连贯感和乐观情绪与健康相关生活质量之间的关联。
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J Thorac Dis. 2016 Dec;8(12):E1632-E1636. doi: 10.21037/jtd.2016.12.16.
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Decrease in quality of life predicts mortality in adult patients with pulmonary arterial hypertension due to congenital heart disease.生活质量下降可预测先天性心脏病所致肺动脉高压成年患者的死亡率。
Neth Heart J. 2015 May;23(5):278-84. doi: 10.1007/s12471-015-0666-9.
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Neth Heart J. 2014 May;22(5):214-5. doi: 10.1007/s12471-014-0545-9.
Quality of life of adult congenital heart disease patients: a systematic review of the literature.
成人先天性心脏病患者的生活质量:文献系统综述
Cardiol Young. 2013 Aug;23(4):473-85. doi: 10.1017/S1047951112002351. Epub 2013 Feb 6.
4
Long-term outcome and quality of life after arterial switch operation: a prospective study with a historical comparison.动脉调转手术的长期预后及生活质量:一项具有历史对照的前瞻性研究
Congenit Heart Dis. 2013 May-Jun;8(3):203-10. doi: 10.1111/chd.12033. Epub 2013 Jan 28.
5
The clinical utility of health-related quality of life assessment in pediatric cardiology outpatient practice.健康相关生活质量评估在儿科心脏病门诊实践中的临床应用价值。
Congenit Heart Dis. 2013 May-Jun;8(3):211-8. doi: 10.1111/chd.12002. Epub 2012 Sep 12.
6
The importance of studying personality in individuals with congenital heart disease.研究先天性心脏病患者个性的重要性。
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Individual and contextual determinants of quality of life in adolescents with congenital heart disease.先天性心脏病青少年生活质量的个体和环境决定因素。
J Adolesc Health. 2012 Aug;51(2):122-8. doi: 10.1016/j.jadohealth.2011.11.007. Epub 2012 Feb 22.
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The prevalence and predictors of anxiety and depression in adolescents with heart disease.心脏病青少年中焦虑和抑郁的患病率及其预测因素。
J Pediatr. 2012 Nov;161(5):943-6. doi: 10.1016/j.jpeds.2012.04.010. Epub 2012 May 26.
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Patients with a congenital heart defect and type D personality feel functionally more impaired, report a poorer health status and quality of life, but use less healthcare.患有先天性心脏缺陷和 D 型人格的患者在功能上感觉更受损,报告的健康状况和生活质量更差,但使用的医疗保健更少。
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