针对肺纤维化患者的教育和自我管理计划的具体内容:共同创作,多阶段,混合方法研究
Thomas F Riegler1, Anja Frei2, Markus Wirz1
1ZHAW Zurich University of Applied Sciences, Institute of Physiotherapy, Winterthur, Switzerland.
ERJ open research
|November 19, 2025
概括
肺纤维化 (PF) 患者教育和自我管理内容是通过与患者和医疗保健专业人员 (HCP) 的共同创作而开发的. 这篇全面的内容涉及PF的关键症状管理和福祉策略.
科学领域:
- 肺部医学 肺部医学
- 患者教育 患者教育
- 健康心理学 心理健康心理学
背景情况:
- 肺纤维化 (PF) 严重影响患者的生活质量,需要有效的患者教育和自我管理 (PESM) 策略.
- 目前的PESM内容可能缺乏具体性和全面性,需要由具有实践经验和临床专业知识的人员提供信息的开发.
研究的目的:
- 确定和建立针对肺纤维化病的全面和特定PESM含量.
- 通过 PF 患者和医疗保健专业人员 (HCP) 的合作,共同创建此内容.
主要方法:
- 使用了一种连续的多相混合方法方法 (定性 → 定量 → 定性).
- 方法包括采访患有PF的人和医疗保健工作者,以及对医疗保健工作者进行两轮Delphi研究.
- 内容验证是通过与PF.的人进行后续采访来进行的.
主要成果:
- 319个初始项目来自第一阶段的采访.
- 260名医疗保健人员参加了德尔菲研究,其中96人完成了两轮研究.
- 会议共商定了150个项目,涵盖了七个主要主题:保持健康,健身,喘息,咳,疲劳,焦虑/抑郁/恐慌和氧气治疗.
结论:
- 通过共同创作方法确定了针对PF的特定,临床相关和有意义的PESM内容.
- 这些发现将为当前和未来的PESM计划提供信息,使患者和临床医生受益.
- 该研究强调了未来对PF自主管理的研究的具体领域.
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