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以患者为中心的重度哮喘描述:患者理解导致重度哮喘转诊评估(PULSAR)。

A Patient-Centered Description of Severe Asthma: Patient Understanding Leading to Assessment for a Severe Asthma Referral (PULSAR).

机构信息

Global Allergy Asthma Patient Platform (GAAPP), Vienna, Austria.

University of East Anglia, Norwich, UK.

出版信息

Patient. 2019 Oct;12(5):539-549. doi: 10.1007/s40271-019-00371-0.

Abstract

BACKGROUND

Although severe asthma can be life-threatening, many patients are unaware they have this condition.

OBJECTIVES

Patient Understanding Leading to Assessment for a Severe Asthma Referral (PULSAR) is a novel, multidisciplinary working group aiming to develop and disseminate a global, patient-centered description of severe asthma to improve patient understanding of severe asthma and effect a change in patient behavior whereby patients are encouraged to visit their healthcare professional, when appropriate.

METHODS

Current definitions from patient organization websites, asthma guidelines, and medication information for key asthma drugs were assessed and informed a multidisciplinary working group, convened to identify common concepts and terminology used to define severe asthma. A patient-centered description of severe asthma and patient checklist were drafted based on working-group discussions and reviewed by an external behavioral scientist for patient understanding and relevance. These were tested using an online US/Canadian survey.

RESULTS

The patient-centered description of severe asthma and patient checklist were reviewed and re-drafted by the authors. The text was simplified following the behavioral-scientist review. The survey (n = 153) included 105 patients with severe asthma. Of those with severe asthma, 92.2% of patients reported that the description was consistent with their experiences of severe asthma and 92.6% of patients reported that the PULSAR initiative would encourage them to visit their healthcare provider.

CONCLUSION

A patient-centered description of severe asthma has been developed and tested using patients with severe asthma; this description will allow patients to assess whether they might have severe asthma and prompt them to visit their healthcare provider, if appropriate.

摘要

背景

尽管严重哮喘可能危及生命,但许多患者并未意识到自己患有这种疾病。

目的

患者理解导致严重哮喘转诊评估(PULSAR)是一个新的多学科工作组,旨在制定和传播一种全球性的、以患者为中心的严重哮喘描述,以提高患者对严重哮喘的理解,并促使患者改变行为,即鼓励患者在适当的时候就诊。

方法

评估了来自患者组织网站、哮喘指南和关键哮喘药物药物信息的现有定义,并召集了一个多学科工作组,以确定用于定义严重哮喘的常见概念和术语。根据工作组的讨论,起草了一份以患者为中心的严重哮喘描述和患者清单,并由一位外部行为科学家进行了患者理解和相关性的审查。这些内容是通过一项在线的美国/加拿大调查进行测试的。

结果

对以患者为中心的严重哮喘描述和患者清单进行了作者的审查和重新起草。简化了行为科学家审查后的文本。该调查(n=153)包括 105 名患有严重哮喘的患者。在这些患有严重哮喘的患者中,92.2%的患者报告说该描述与他们的严重哮喘经历相符,92.6%的患者报告说 PULSAR 倡议将鼓励他们就诊。

结论

已经开发并使用严重哮喘患者对以患者为中心的严重哮喘描述进行了测试;该描述将使患者能够评估他们是否可能患有严重哮喘,并在适当的时候促使他们就诊。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/08db/6697753/36dec77896d4/40271_2019_371_Fig1_HTML.jpg

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