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库欣综合征患者特异性生存质量评估及其决定因素:我们学到了什么?

Disease-specific quality of life evaluation and its determinants in Cushing's syndrome: what have we learnt?

机构信息

Health Economics and Outcomes Research, IMS Health, C/Dr. Ferran 25-27, 2º, 08034, Barcelona, Spain.

出版信息

Pituitary. 2014 Apr;17(2):187-95. doi: 10.1007/s11102-013-0484-2.

DOI:10.1007/s11102-013-0484-2
PMID:23564339
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3942630/
Abstract

Cushing's syndrome (CS) has a considerable negative impact on patient health-related quality of life (HRQoL). Two disease-specific instruments (the CushingQoL and the Tuebingen CD-25 questionnaire) are now available to assess the impact of the disease and its treatment on HRQoL. The purpose of this review was to summarize the characteristics of the studies which have used these two instruments to date and summarize their findings regarding (a) the determinants of disease-specific HRQoL in patients with CS and (b) the impact of treatment for CS on disease-specific HRQoL. A total of 7 studies were identified, 5 with the CushingQoL and 2 with the Tuebingen CD-25. Most were observational studies, though the CushingQoL had been used in one randomized clinical trial. In terms of clinical factors, there was some evidence for an association between UFC levels and disease-specific HRQoL, though the presence and strength of the association varied between studies. There was also some evidence that a more recent diagnosis of CS could lead to poorer HRQoL, and that length of time with adrenal insufficiency may also affect HRQoL. There was no evidence for an impact on disease-specific HRQoL of etiology or of the clinical signs and symptoms associated with CS, such as bruising, rubor, and fat deposits. One factor which did have a significant negative effect on HRQoL was the presence of depression. No clear picture emerged as to the effect of demographic variables such as age and gender on HRQoL scores, though there was some evidence for poorer HRQoL in female patients. As regards treatment, the two interventions studied to date (transsphenoidal surgery and pasireotide) both showed significant gains in HRQoL, with moderate to large effect sizes. This type of review is useful in summarizing knowledge to date and suggesting future research directions.

摘要

库欣综合征(CS)对患者的健康相关生活质量(HRQoL)有相当大的负面影响。目前有两种疾病特异性工具(CushingQoL 和 Tuebingen CD-25 问卷)可用于评估疾病及其治疗对 HRQoL 的影响。本综述的目的是总结迄今为止使用这两种工具的研究的特点,并总结其关于以下方面的发现:(a)CS 患者疾病特异性 HRQoL 的决定因素,以及(b)CS 治疗对疾病特异性 HRQoL 的影响。共确定了 7 项研究,其中 5 项使用了 CushingQoL,2 项使用了 Tuebingen CD-25。大多数是观察性研究,尽管 CushingQoL 曾在一项随机临床试验中使用过。就临床因素而言,UFC 水平与疾病特异性 HRQoL 之间存在一定的关联证据,但关联的存在和强度因研究而异。也有一些证据表明,CS 的最近诊断可能导致更差的 HRQoL,并且肾上腺功能不全的时间长短也可能影响 HRQoL。CS 的病因或与 CS 相关的临床体征和症状(如瘀伤、红斑和脂肪沉积)对疾病特异性 HRQoL 没有影响。一个对 HRQoL 有显著负面影响的因素是抑郁的存在。关于人口统计学变量(如年龄和性别)对 HRQoL 评分的影响,没有明确的结论,但有证据表明女性患者的 HRQoL 较差。至于治疗,迄今为止研究的两种干预措施(经蝶窦手术和帕瑞肽)都显示出 HRQoL 的显著改善,具有中到大的效应量。这种类型的综述有助于总结迄今为止的知识,并提出未来的研究方向。

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本文引用的文献

1
Psychometric performance of the CushingQoL questionnaire in conditions of real clinical practice.库欣生活质量问卷在真实临床实践条件下的心理测量性能。
Eur J Endocrinol. 2012 Sep;167(3):337-42. doi: 10.1530/EJE-12-0325. Epub 2012 Jun 7.
2
A 12-month phase 3 study of pasireotide in Cushing's disease.一项为期 12 个月的培塞利肽治疗库欣病的 3 期研究。
N Engl J Med. 2012 Mar 8;366(10):914-24. doi: 10.1056/NEJMoa1105743.
3
The development of the Tuebingen Cushing's disease quality of life inventory (Tuebingen CD-25). Part II: normative data from 1784 healthy people.图宾根库欣病生活质量量表(Tuebingen CD-25)的发展。第二部分:来自 1784 名健康人的规范数据。
Clin Endocrinol (Oxf). 2012 Jun;76(6):861-7. doi: 10.1111/j.1365-2265.2011.04280.x.
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The Patient Reported Outcomes in Lupus (PATROL) study: role of depression in health-related quality of life in a Southern California lupus cohort.狼疮患者报告结局(PATROL)研究:加利福尼亚南部狼疮队列中抑郁与健康相关生活质量的关系。
Lupus. 2011 Oct;20(12):1285-92. doi: 10.1177/0961203311412097. Epub 2011 Aug 3.
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The development of the Tuebingen Cushing's disease quality of life inventory (Tuebingen CD-25). Part I: construction and psychometric properties.图宾根库欣病生活质量量表(Tuebingen CD-25)的编制。第一部分:编制和心理测量特性。
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Negative illness perceptions are associated with impaired quality of life in patients after long-term remission of Cushing's syndrome.长期缓解后的库欣综合征患者中,负面的疾病认知与生活质量受损有关。
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The European Registry on Cushing's syndrome: 2-year experience. Baseline demographic and clinical characteristics.《库欣综合征欧洲注册研究:2 年经验。基线人口统计学和临床特征。》
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Relation of health-related quality of life to metabolic syndrome, obesity, depression and comorbid illnesses.健康相关生活质量与代谢综合征、肥胖、抑郁和共病的关系。
Int J Obes (Lond). 2011 Aug;35(8):1087-94. doi: 10.1038/ijo.2010.230. Epub 2010 Nov 2.
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Epidemiology of Cushing's syndrome.库欣综合征的流行病学。
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