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了解严重、复发性、双侧鼻息肉患者的体验:美国和德国的定性访谈研究。

Understanding the Patient Experience of Severe, Recurrent, Bilateral Nasal Polyps: A Qualitative Interview Study in the United States and Germany.

机构信息

Patient-Centered Outcomes, Adelphi Values, Bollington, Cheshire, England, UK.

Clinical Sciences, GlaxoSmithKline R&D, Stockley Park, Uxbridge, England, UK.

出版信息

Value Health. 2020 May;23(5):632-641. doi: 10.1016/j.jval.2019.11.005. Epub 2020 Mar 11.

Abstract

OBJECTIVES

To qualitatively explore patient experiences of severe, recurrent, bilateral nasal polyps (NP).

METHODS

A targeted literature review of published qualitative studies and online blogs describing patient experiences of NP was conducted. Semistructured concept elicitation interviews were conducted in the United States and Germany with participants ≥18 years with severe, recurrent, bilateral NP to explore their symptom experience and impacts on health-related quality of life (HRQoL; NCT03221192). A subset of 10 participants reported symptoms and impacts using a smartphone or tablet application (app) over a 10-day period.

RESULTS

A paucity of qualitative evidence regarding patient experience of NP was identified from the literature or blog review. Twenty-seven participant interviews were conducted. Thirty-six symptoms were identified, including 7 primary symptoms (nasal congestion [n = 27 of 27], breathing difficulties [n = 27 of 27], postnasal drip [n = 25 of 27], runny nose [n = 24 of 27], head/facial pressure [n = 23 of 27], loss of smell [n = 23 of 27], loss of taste [n = 22 of 27]) and 29 secondary symptoms (the most common were mucus/catarrh and nose bleeds [both n = 20 of 27]). Most symptoms were reported to vary both within and between days. Sixty impacts of severe NP were reported, including impacts on sleep (n = 22 of 27), physical functioning (n = 21 of 27), activities of daily living (n = 21 of 27), emotional well-being (n = 27 of 27), treatment (n = 23 of 27), social life (n = 26 of 27), and work (n = 19 of 27). Symptoms/impacts reported using the app were consistent with interview findings, although new symptoms were identified (ear pain, throat pain, nasal scabs, and nasal burning). These results supported the development of a conceptual model outlining concepts related to symptoms, impacts, and treatment of NP.

CONCLUSIONS

Severe, recurrent, bilateral NP are associated with a range of symptoms that have significant detrimental impact on HRQoL.

摘要

目的

定性探讨严重、复发性双侧鼻息肉(NP)患者的体验。

方法

对已发表的定性研究和描述 NP 患者体验的在线博客进行了有针对性的文献回顾。在美国和德国,对年龄≥18 岁、患有严重、复发性双侧 NP 的患者进行了半结构式概念提取访谈,以探讨他们的症状体验及其对健康相关生活质量(HRQoL)的影响(NCT03221192)。其中 10 名参与者使用智能手机或平板电脑应用程序(app)在 10 天内报告症状和影响。

结果

从文献或博客综述中发现,关于 NP 患者体验的定性证据很少。共进行了 27 名参与者的访谈。确定了 36 种症状,包括 7 种主要症状(鼻塞[n=27 of 27]、呼吸困难[n=27 of 27]、后鼻滴注[n=25 of 27]、流鼻涕[n=24 of 27]、头/面部压力[n=23 of 27]、嗅觉丧失[n=23 of 27]、味觉丧失[n=22 of 27])和 29 种次要症状(最常见的是黏液/鼻涕和鼻出血[均 n=27 of 27])。大多数症状报告在日内和日间均有变化。报告了 60 种严重 NP 的影响,包括对睡眠(n=27 of 27)、身体功能(n=21 of 27)、日常生活活动(n=21 of 27)、情绪健康(n=27 of 27)、治疗(n=23 of 27)、社交生活(n=26 of 27)和工作(n=19 of 27)的影响。使用 app 报告的症状/影响与访谈结果一致,但也发现了新的症状(耳痛、咽痛、鼻痂、鼻灼痛)。这些结果支持开发一个概念模型,概述与 NP 的症状、影响和治疗相关的概念。

结论

严重、复发性双侧 NP 与一系列症状相关,这些症状对 HRQoL 有显著的不利影响。

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