Swigris Jeffrey J, Pryor Joseph B, Aronson Kerri I, Guess Taylor A, Solomon Joshua J
Center for Interstitial Lung Disease, National Jewish Health, Denver, Colorado; and.
Division of Pulmonary and Critical Care Medicine, Weill Cornell Medicine, New York, New York.
Ann Am Thorac Soc. 2025 Aug;22(8):1147-1154. doi: 10.1513/AnnalsATS.202411-1215OC.
Dyspnea impairs the quality of life of patients with interstitial lung disease (ILD). To deliver the best care to patients with ILD, practitioners must understand how patients view and categorize dyspnea severity. Item response theory (IRT) analyses use a probabilistic model to explain the association between an abstract construct (here, dyspnea severity) and observed data (e.g., responses to a dyspnea questionnaire). Bookmarking is a method for establishing cut-points along the range of a questionnaire's score to define severity categories. We performed an IRT analysis on response data from the University of California San Diego Shortness of Breath questionnaire administered at the time of enrollment into the Pulmonary Fibrosis Foundation Patient Registry (PFF-PR). Results of the IRT were used to generate a book of hypothetical patient vignettes, which were ordered from no dyspnea (first page) to most severe dyspnea (last page). Convenience samples of patients with ILD and ILD physicians were recruited to work in groups to decide where bookmarks should be placed to divide the vignette book into categories of overall dyspnea severity. Data from 1,760 patients in the PFF-PR were used in the IRT analysis. Twenty-one vignettes were generated to cover the full spectrum of dyspnea severity. There appeared to be no differences in bookmark positions between female and male ILD physicians or between patient groups based on supplemental oxygen use. Patients and physicians bookmarked dyspnea similarly at the mild end of the dyspnea severity spectrum, but at the severe end, patients rated dyspnea more severely than physicians. When applied back to the registrants in the PFF-PR, patients' bookmarks categorized 177 (10%) registrants with more severe dyspnea than physicians' bookmarks, including 159 (9%) registrants who would be classified with "severe" dyspnea according to patients but only "moderate" dyspnea according to the physicians. Patients and ILD physicians categorize dyspnea similarly at the milder end of the severity spectrum, but patients view dyspnea more severely than physicians at the higher end. Remaining aware of this in clinical encounters could improve understanding of patients' experiences living with ILD and enhance empathy in the patient-physician relationship.
呼吸困难会损害间质性肺疾病（ILD）患者的生活质量。为了给ILD患者提供最佳护理，从业者必须了解患者如何看待和划分呼吸困难的严重程度。项目反应理论（IRT）分析使用概率模型来解释抽象概念（此处为呼吸困难严重程度）与观察数据（例如对呼吸困难问卷的回答）之间的关联。书签法是一种沿着问卷分数范围确定切点以定义严重程度类别的方法。我们对在加入肺纤维化基金会患者登记处（PFF-PR）时进行的加利福尼亚大学圣地亚哥分校呼吸急促问卷的回答数据进行了IRT分析。IRT的结果用于生成一本假设患者病例手册，这些病例从无呼吸困难（第一页）到最严重呼吸困难（最后一页）依次排列。招募了ILD患者和ILD医生的便利样本分组工作，以确定应在何处放置书签，将病例手册划分为总体呼吸困难严重程度类别。PFF-PR中1760名患者的数据用于IRT分析。生成了21个病例以涵盖呼吸困难严重程度的全谱。女性和男性ILD医生之间或基于是否使用补充氧气的患者组之间，书签位置似乎没有差异。在呼吸困难严重程度谱的轻度端，患者和医生对呼吸困难的书签划分相似，但在重度端，患者对呼吸困难的评分比医生更严重。当应用于PFF-PR中的登记者时，患者的书签将177名（10%）登记者归类为比医生的书签划分的呼吸困难更严重，其中包括159名（9%）登记者，根据患者的划分会被归类为“严重”呼吸困难，但根据医生的划分仅为“中度”呼吸困难。在严重程度谱的较轻端，患者和ILD医生对呼吸困难的分类相似，但在较高端，患者比医生更严重地看待呼吸困难。在临床诊疗中意识到这一点可以增进对患者ILD生活经历的理解，并增强医患关系中的同理心。
