Anouk Delameillieure, Vivien Somogyi, Silja Schenk, Nur Toreyin, Nikola Stenzel, Liesbet Van Bulck, Sofie Breuls, Michael Kreuter, Wim A Wuyts, Nesrin Mogulkoc, Jeanette Boyd, Steve Jones, Liam Galvin, Fabienne Dobbels
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引用次数: 0
摘要
特发性肺纤维化（IPF）和其他形式进行性肺纤维化（PPF）患者具有较高的症状负担和较差的健康相关生活质量（HRQoL）。尽管努力提供专门治疗，但对这些患者的临床护理仍然不够理想，一些非医疗需求仍然没有得到解决。制定核心结果集（COS）有助于确定临床护理中应衡量和采取行动的商定结果的最小集合。目的：作为开发IPF/PPF COS的第一步，我们旨在确定IPF/PPF研究中调查的结果域。方法：在COCOS-IPF（共同设计IPF患者的核心结果集）项目中进行，该范围审查遵循乔安娜布里格斯研究所的方法和PRISMA（系统审查和荟萃分析的首选报告项目）指南，检索PubMed， Embase和Web of Science中定量，定性和混合方法的论文。我们逐字提取每篇论文的结果，并使用COMET（有效性试验中的核心结果测量）分类法对它们进行分类。然后，研究团队将具有相似含义的结果或概念归纳到结果域中。结果：纳入文献428篇，提取结果1685条。大多数结果（n=1340）是在定量来源中确定的，我们可以将其分为64个结果域，主要领域是“全因生存”（n=237）、“肺功能”（n=164）和“运动能力”（n=99）。定性来源确定了51个结果领域，其中最常见的是“做你喜欢的活动的能力”（n=31），“焦虑、担心和恐惧”（n=26）和“处理疾病进展”（n=25）。结论：已确定的结果跨越不同领域，突出了患者经历的复杂性，可以为IPF/PPF临床护理以及未来研究提供COS的基础。
Identifying outcome domains to establish a core outcome set for progressive pulmonary fibrosis: a scoping review.
Introduction: People with idiopathic pulmonary fibrosis (IPF) and other forms of progressive pulmonary fibrosis (PPF) have a high symptom burden and a poor health-related quality of life (HRQoL). Despite efforts to offer specialised treatment, clinical care for these patients remains suboptimal and several nonmedical needs remain unaddressed. Developing a core outcome set (COS) can help to identify a minimum set of agreed-upon outcomes that should be measured and acted-upon in clinical care.
Aim: As a first step towards developing a COS for IPF/PPF, we aimed to identify outcome domains investigated in IPF/PPF research.
Methods: Conducted within the COCOS-IPF (Co-designing a Core Outcome Set for and with patients with IPF) project, this scoping review follows Joanna Briggs Institute methodology and PRISMA (Preferred Reporting Items for Systematic reviews and Meta-Analyses) guidelines to search PubMed, Embase and Web of Science for quantitative, qualitative and mixed-methods papers. We extracted each paper's outcomes verbatim and classified them using the COMET (Core Outcome Measures in Effectiveness Trials) taxonomy. Then, the research team structured outcomes or concepts with similar meanings inductively into outcome domains.
Results: We included 428 papers, extracting 1685 outcomes. Most outcomes (n=1340) were identified in quantitative sources, which we could classify in 64 outcome domains, with the main domains being "all-cause survival" (n=237), "lung function" (n=164) and "exercise capacity" (n=99). Qualitative sources identified 51 outcome domains, with the most frequent being "capability to do activities you enjoy" (n=31), "anxiety, worry and fear" (n=26) and "dealing with disease progression" (n=25).
Conclusions: The identified outcomes, spanning diverse domains, highlight the complexity of patient experiences and can form the basis to develop a COS for IPF/PPF clinical care, as well as future research.
期刊介绍：
The European Respiratory Review (ERR) is an open-access journal published by the European Respiratory Society (ERS), serving as a vital resource for respiratory professionals by delivering updates on medicine, science, and surgery in the field. ERR features state-of-the-art review articles, editorials, correspondence, and summaries of recent research findings and studies covering a wide range of topics including COPD, asthma, pulmonary hypertension, interstitial lung disease, lung cancer, tuberculosis, and pulmonary infections. Articles are published continuously and compiled into quarterly issues within a single annual volume.
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