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. 2024 Dec;21(12):1670-1677. doi: 10.1513/AnnalsATS.202405-457OC.
In interstitial lung disease (ILD), symptoms drive impairments in health-related quality of life. Patient-reported outcome measures (PROMs) can assess whether interventions change symptom severity. The meaningfulness of change in a PROM score is estimated by anchoring it to a related variable for which meaningful change has been previously established. Patient global impressions of severity (PGISs) are single-item PROMs that may make trustworthy anchors, but, for ILD, the meaningfulness of change in PGIS items for shortness of breath (SOB), cough, and fatigue/low energy are unknown. To improve understanding of how patients with ILD rate and categorize symptoms, how differing levels of symptom severity affect lived experiences, and how patients derive and apply meaningfulness to change in symptoms. We used one-on-one interviews and an electronic survey to collect data from patients with various forms of ILD. Interviews were conducted to provide richness and context to survey responses. We conducted certain analyses with respondents stratified by supplemental oxygen use. Interviewees ( = 18) confirmed SOB, cough, and fatigue/low energy as the most bothersome symptoms of ILD. Among 298 survey respondents, on a PGIS for SOB with a 0-4 numeric rating scale, on average, those who used supplemental O had more severe SOB than nonusers, and most respondents considered a 2-point change meaningful for worsening (45.5%) or improvement (47.2%). On a PGIS with a five-option ordinal response scale, for SOB, most considered a 1-category change meaningful for worsening (49.8%) and a 2-category change meaningful for improvement (42.3); for cough frequency, most respondents considered a 1-category change on the five-option ordinal response scale meaningful for worsening (48.2%) or improvement (45.0%). Survey responses for SOB at the present time versus 3 months earlier (patient global impressions of change) were biased toward the present state. PGISs can be used as anchors for meaningful change analyses of PROMs that assess SOB or cough in patients with ILD. Patient global impressions of change demonstrate present-state bias and should not be used. Patients' descriptions paint a vivid picture of lived experience with varying levels of symptom severity and can help contextualize change scores.
在间质性肺病 (ILD) 中，症状会导致健康相关生活质量受损。患者报告的结局测量 (PROM) 可评估干预措施是否改变症状严重程度。通过将其与先前已确定有意义变化的相关变量相关联，可以估计 PROM 评分变化的意义。患者总体印象严重程度 (PGIS) 是单项 PROM，可能成为可靠的锚定物，但对于 ILD，PGIS 项目对呼吸急促 (SOB)、咳嗽和疲劳/低能量的变化的意义尚不清楚。为了更好地了解ILD 患者如何评估和分类症状，不同程度的症状严重程度如何影响生活体验，以及患者如何理解和应用症状变化的意义，我们使用一对一访谈和电子调查从各种形式的ILD 患者中收集数据。访谈是为了提供调查结果的丰富性和背景。我们根据是否使用补充氧气对受访者进行了某些分析。受访者 ( = 18) 确认呼吸急促、咳嗽和疲劳/低能量是ILD 最困扰的症状。在 298 名调查受访者中，在 SOB 的 PGIS 上使用 0-4 数字评分量表，平均而言，使用补充氧气的患者的 SOB 比非使用者更严重，大多数受访者认为恶化 (45.5%) 或改善 (47.2%) 的 2 分变化具有意义。在 SOB 的 PGIS 上使用五选项有序反应量表，对于 SOB，大多数人认为恶化 (49.8%) 和改善 (42.3%) 的 1 类变化具有意义；对于咳嗽频率，大多数受访者认为五选项有序反应量表上的 1 类变化在恶化 (48.2%) 或改善 (45.0%) 方面具有意义。现在与 3 个月前的 SOB 患者总体印象变化 (患者对变化的总体印象) 调查结果偏向于现在的状态。PGIS 可用于评估 ILD 患者 SOB 或咳嗽的 PROM 有意义变化分析的锚定物。患者总体印象变化显示出现在状态的偏差，不应使用。患者的描述生动地描绘了不同严重程度症状的生活体验，并有助于上下文变化分数。
