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通过对患者使用SIMPLIFY的体验进行定性分析,构建临床对话框架。

Developing a framework for clinical conversations using a qualitative analysis of the patient experience of SIMPLIFY.

作者信息

Maggs Jill, Sweeney Liam, Pucci Austin, McWilliams Emma, Yablon Dana, Ertman Benjamin, Butcher Jennifer L, Everhart Robin S, Siracusa Christopher, Gifford Alex H, Mayer-Hamblett Nicole, Bacon Callie, Goodman Andrea, Woo Tia, Riekert Kristin A, Sawicki Gregory S, Prickett Michelle

机构信息

Cystic Fibrosis Foundation, Bethesda, MD, USA.

Department of Medicine, Division of Pulmonary and Critical Care Medicine, Johns Hopkins University, Baltimore, MD, USA.

出版信息

Patient Educ Couns. 2025 Sep;138:109183. doi: 10.1016/j.pec.2025.109183. Epub 2025 May 21.

DOI:10.1016/j.pec.2025.109183
PMID:40449206
Abstract

OBJECTIVES

We explored the impact of taking part in a medication discontinuation study for people with cystic fibrosis (CF) on subsequent clinical conversations and what interviewees valued as characteristics of these conversations.

METHODS

This analysis is part of the Qualitative Understanding of the Experience of SIMPLIFY Trial (QUEST), a qualitative companion study to a discontinuation trial of two commonly prescribed medications for people with CF. We interviewed 109 total individuals (87 people with CF and 22 caregivers). The interviews were analyzed to explore the influence of participation in a discontinuation study on clinical conversations.

RESULTS

Respect emerged as an overarching theme of these interviews: how much the interviewees respected their clinicians and how they appreciated having their autonomy respected too. Other desirable attributes of clinical conversations surfaced including the importance of reciprocity, empowerment, sensitivity, partnership, empathy, consideration and transparency; (R.E.S.P.E.C.T).

CONCLUSIONS

Communication is a fundamental aspect of chronic disease management. This population study focused on patient perspectives of clinical conversations after sharing the experience of being in a novel discontinuation study. Since the acronym R.E.S.P.E.C.T. emerged from the data, we believe it has value as a framework for clinical conversations with people who have chronic conditions that require active selfmanagement.

摘要

目的

我们探讨了参与囊性纤维化(CF)患者药物停用研究对后续临床对话的影响,以及受访者认为这些对话的哪些特征有价值。

方法

本分析是“简化试验经验的定性理解”(QUEST)的一部分,这是一项针对CF患者两种常用处方药停用试验的定性配套研究。我们共采访了109人(87名CF患者和22名护理人员)。对访谈进行分析,以探讨参与停用研究对临床对话的影响。

结果

尊重成为这些访谈的一个总体主题:受访者对临床医生的尊重程度,以及他们对自身自主权得到尊重的感激之情。临床对话的其他理想属性也浮出水面,包括互惠、赋权、敏感、伙伴关系、同理心、体贴和透明度的重要性;(尊重)。

结论

沟通是慢性病管理的一个基本方面。这项人群研究关注患者在分享参与一项新型停用研究的经历后对临床对话的看法。由于“尊重”这个首字母缩略词是从数据中得出的,我们认为它作为与需要积极自我管理的慢性病患者进行临床对话的框架具有价值。

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