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对患有间歇性肺病 (ILD) 患者的患者报告经验测量 (PREM):对先前存在的措施的修改

Jessica Mandizha^1,2, Charlie Crook¹, Joseph Lanario^1,3

¹Respiratory Medicine, Royal Devon and Exeter NHS Foundation Trust, Exeter, UK.

BMJ open respiratory research

|January 20, 2026

概括

风湿性关节炎患者报告的经验测量 (RA-PREM) 适用于间歇性肺病 (ILD) 患者,创建了ILD-PREM. 这种修改后的措施对于ILD群体是可以接受和有效的.

科学领域:

衡量医疗保健质量的测量方法
患者体验研究研究的研究.
风湿病学和肺病学风湿学和肺病学

背景情况:

患者报告体验测量 (PREM) 对于评估医疗保健质量和为政策提供信息至关重要.
类风湿性关节炎患者报告经验测量 (RA-PREM) 已被验证用于类风湿性疾病.
它对间歇性肺病 (ILD) 种群的适用性需要研究.

研究的目的:

确定RA-PREM对于间歇性肺病 (ILD) 患者的可接受性和可行性.
为了适应和验证RA-PREM用于ILD群体,创建ILD-PREM.

主要方法:

采用混合方法,以患者为中心的方法,涉及患者调查和重点小组.
一个跨学科的指导小组与患者合作伙伴指导了修改过程.
专家患者合作伙伴和研究人员就修改仪器 (ILD-PREM) 的面部和内容有效性达成共识.

主要成果:

焦点小组导致RA-PREM的三个领域的四个陈述的修改.
经过修改的仪器ILD-PREM在患者合作伙伴和研究人员中达成了关于面部和内容有效性的共识.
73名患者在门诊预约后完成了ILD-PREM,这表明可行性.

结论:

ILD-PREM,包括8个领域的24个陈述,是可以接受的,并证明ILD患者的面部/内容有效性.
建议进行进一步的纵向验证,以确定各种ILD服务和群体的标准,构建有效性和可靠性.

关键词:

异形性肺纤维化异形性肺纤维化间歇性纤维化间歇性纤维化患者结果评估评估.

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