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智利囊性纤维化护理。

Cystic fibrosis care in Chile.

机构信息

Division of Pulmonary Medicine, Department of Pediatrics, The University of Alabama at Birmingham, Birmingham, Alabama 35233, USA.

出版信息

Curr Opin Pulm Med. 2009 Nov;15(6):632-7. doi: 10.1097/MCP.0b013e328330db7a.

Abstract

PURPOSE OF REVIEW

Cystic fibrosis (CF) has been underdiagnosed and undertreated for many years in Latin American countries, including Chile. This article describes the evolution of CF care in view of recent reforms in healthcare delivery in Chile, and the opportunities that exist to improve outcomes.

RECENT FINDINGS

The characteristics of the population of CF patients are described using recently collected data. Unfortunately, current data do not allow an accurate assessment of CF care in Chile. The situation is similar elsewhere in Latin America. Further, we describe the obstacles to achieving optimum CF care, among them lack of expertise among healthcare professionals, dispersion of patients between private and public health systems, and limited laboratory infrastructure despite significant economic growth and improvement in national health indices. We discuss different avenues to enhance CF care in Chile and Latin America.

SUMMARY

Centralization and organization of CF care within centers of excellence employing 'best practices' and engaging in quality-improvement initiatives, and the creation of national data registries represent important steps to improve survival, diminish morbidity, and allow more extensive participation of Latin American CF patients in multicenter clinical research.

摘要

目的综述

囊性纤维化(CF)在包括智利在内的许多拉丁美洲国家多年来一直被误诊和治疗不足。本文描述了鉴于智利医疗保健服务提供方面的最新改革,CF 治疗方面的演变,以及改善治疗效果的机会。

最近的发现

使用最近收集的数据描述 CF 患者人群的特征。不幸的是,目前的数据无法准确评估智利的 CF 护理情况。在拉丁美洲其他地方也是如此。此外,我们描述了实现最佳 CF 护理的障碍,包括医疗保健专业人员缺乏专业知识、患者在私人和公共卫生系统之间分散以及尽管经济增长和国家健康指数改善,但实验室基础设施有限。我们讨论了在智利和拉丁美洲加强 CF 护理的不同途径。

总结

在卓越中心内集中和组织 CF 护理,采用“最佳实践”并参与质量改进计划,以及创建国家数据登记册,是改善生存、减少发病率和使更多的拉丁美洲 CF 患者能够参与多中心临床研究的重要步骤。

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