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本文引用的文献

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Prevalence of asthma in Portuguese adults - the EPI-ASTHMA study, a nationwide population-based survey.葡萄牙成年人哮喘患病率——EPI-ASTHMA研究,一项基于全国人口的调查。
Pulmonology. 2025 Dec 31;31(1):2466920. doi: 10.1080/25310429.2025.2466920. Epub 2025 Mar 17.
2
EULAR recommendations for the involvement of patient research partners in rheumatology research: 2023 update.EULAR 关于患者研究伙伴参与风湿病学研究的建议:2023 年更新版。
Ann Rheum Dis. 2024 Oct 21;83(11):1443-1453. doi: 10.1136/ard-2024-225566.
3
The impact of patient and public involvement in chronic respiratory disease research: the ConectAR experience.患者和公众参与慢性呼吸道疾病研究的影响:ConectAR项目经验
Breathe (Sheff). 2024 Mar;20(1):230173. doi: 10.1183/20734735.0173-2023. Epub 2024 Mar 12.
4
Patient and public involvement in the development of the digital tool MyBoT to support communication between young people with a chronic condition and care providers.患者和公众参与开发数字工具 MyBoT,以支持慢性病青少年与护理提供者之间的沟通。
Health Expect. 2024 Apr;27(2):e14003. doi: 10.1111/hex.14003.
5
Public involvement in chronic respiratory diseases research: A qualitative study of patients', carers' and citizens' perspectives.公众参与慢性呼吸道疾病研究:对患者、护理人员和公民观点的定性研究。
Health Expect. 2024 Feb;27(1):e13917. doi: 10.1111/hex.13917.
6
Access to Technology and Digital Literacy as Determinants of Health and Health Care.技术获取和数字素养作为健康和医疗保健的决定因素。
Creat Nurs. 2023 Aug;29(3):258-263. doi: 10.1177/10784535231211682. Epub 2023 Nov 1.
7
Mobilizing Patient and Public Involvement in the Development of Real-World Digital Technology Solutions: Tutorial.动员患者和公众参与真实世界数字技术解决方案的开发:教程。
J Med Internet Res. 2023 Oct 27;25:e44206. doi: 10.2196/44206.
8
Diversity in patient and public involvement in healthcare research and education-Realising the potential.患者和公众参与医疗保健研究和教育的多样性——挖掘潜力。
Health Expect. 2024 Feb;27(1):e13896. doi: 10.1111/hex.13896. Epub 2023 Oct 23.
9
Recruitment of patients, carers and members of the public to advisory boards, groups and panels in public and patient involved health research: a scoping review.招募患者、护理人员和公众成员加入公共和患者参与的健康研究中的咨询委员会、小组和专题小组:范围综述。
BMJ Open. 2023 Oct 13;13(10):e072918. doi: 10.1136/bmjopen-2023-072918.
10
Digital literacy as a new determinant of health: A scoping review.数字素养作为健康的新决定因素:一项范围综述。
PLOS Digit Health. 2023 Oct 12;2(10):e0000279. doi: 10.1371/journal.pdig.0000279. eCollection 2023 Oct.

哮喘患者对公众参与、介入和参与研究的兴趣:EPI - 哮喘研究的二次分析

Interest in public involvement, engagement and participation in research among patients with asthma: A secondary analysis of the EPI-ASTHMA study.

作者信息

Cunha Mafalda Simões, Santos João da Silva, Sá-Sousa Ana, Neves Ana Luísa, da Silva Ana Alves, Gomes Diana, Santos Janete Quelhas, Bernardo Filipa, de Sousa Jaime Correia, Almeida-Fonseca João, Jácome Cristina

机构信息

Faculty of Medicine, University of Porto, Porto, Portugal.

RISE-Health, MEDCIDS-Department of Community Medicine, Information and Health Decision Sciences, Faculty of Medicine, University of Porto, Porto, Portugal.

出版信息

PLoS One. 2025 Sep 12;20(9):e0332220. doi: 10.1371/journal.pone.0332220. eCollection 2025.

DOI:10.1371/journal.pone.0332220
PMID:40938836
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12431402/
Abstract

Patient and Public Involvement, Engagement and Participation (PPIEP) is essential in asthma research due to the disease's complexity. However, information regarding the characteristics of patients with asthma interested in engaging in PPIEP initiatives is scarce. We aimed to identify factors associated with the interest in PPIEP among patients with asthma. This is a secondary analysis of the EPI-ASTHMA nationwide asthma prevalence study, which included adult patients with asthma recruited from 38 primary healthcare centres from mainland Portugal. Demographic and clinical characteristics as well as interest in PPIEP were collected. A multivariable logistic regression model was built to explore associations between participants' characteristics and PPIEP interest. A total of 502 participants with asthma (52 ± 15.9 years, 64.1% females) were analysed and 218 (43.4%) were interested in being involved in PPIEP. Having higher education (adjusted OR 2.29, 95%CI 1.47-3.57) and owning a smartphone (adjusted OR 4.63, 95%CI 2.51-8.55) were significantly associated with higher odds of being interested in PPIEP. Being female demonstrated a borderline significant association (adjusted OR 1.53, 95%CI 1.00-2.33). Participants experiencing higher quality of life were significantly associated with lower odds of being interested in PPIEP (adjusted OR 0.77, 95%CI 0.65-0.92). Two out of five patients with asthma were interested in participating in PPIEP initiatives. By understanding the characteristics of patients willing to participate in PPIEP, we can develop strategies to reach a wider audience and make PPIEP more inclusive. The identified associated factors need to be further investigated.

摘要

由于哮喘疾病的复杂性,患者及公众参与、介入和参与(PPIEP)在哮喘研究中至关重要。然而,关于有兴趣参与PPIEP举措的哮喘患者特征的信息却很匮乏。我们旨在确定与哮喘患者对PPIEP感兴趣相关的因素。这是对EPI - ASTHMA全国哮喘患病率研究的二次分析,该研究纳入了从葡萄牙大陆38个初级医疗中心招募的成年哮喘患者。收集了人口统计学和临床特征以及对PPIEP的兴趣。构建了多变量逻辑回归模型以探讨参与者特征与PPIEP兴趣之间的关联。共分析了502名哮喘参与者(年龄52±15.9岁,女性占64.1%),其中218名(43.4%)有兴趣参与PPIEP。受过高等教育(调整后的比值比为2.29,95%置信区间为1.47 - 3.57)和拥有智能手机(调整后的比值比为4.63,95%置信区间为2.51 - 8.55)与对PPIEP感兴趣的较高几率显著相关。女性表现出临界显著关联(调整后的比值比为1.53,95%置信区间为1.00 - 2.33)。生活质量较高的参与者与对PPIEP感兴趣的较低几率显著相关(调整后的比值比为0.77,95%置信区间为0.65 - 0.92)。五分之二的哮喘患者有兴趣参与PPIEP举措。通过了解愿意参与PPIEP的患者特征,我们可以制定策略以覆盖更广泛的受众并使PPIEP更具包容性。已确定的相关因素需要进一步研究。