Saskatchewan Health Quality Council (HQC), Saskatoon, SK, Canada.
Saskatchewan Center for Patient Oriented Research (SCPOR), University of Saskatchewan, Saskatoon, SK, Canada.
J Patient Rep Outcomes. 2024 Aug 26;8(1):101. doi: 10.1186/s41687-024-00773-1.
Individuals may experience a range of symptoms after the clearance of the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection. This condition is termed long COVID (LC) or Post-COVID-19 condition (PCC). Despite the appreciable number of symptoms documented to date, one key challenge remains in the robust characterization of LC outcomes. This review aimed to assess the properties, identify gaps, and provide recommendations for relevant descriptive and evaluative Patient-Reported Outcome Measurement (PROM) instruments that can be used to comprehensively characterize LC.
To achieve this objective, we identified and reviewed descriptive and evaluative PROM instruments that have been developed and validated to date with people living with LC. Our review assessed their properties, identified gaps, and recommended PROMs suitable for characterizing LC. To ensure a comprehensive and robust characterization of LC, we next identified, reviewed, and selected (with the input of patient partners) PROMs associated with the most frequently reported LC symptoms. The evaluation criteria included psychometric evidence, mode of delivery, cost, and administration time.
Traditional matrix mapping revealed Post-COVID Functional Status Scale (PCFS) as a choice instrument for capturing LC outcomes largely because of the comprehensive domains it covered, and the number of psychometric evidence reported in literatures. This instrument can be effectively paired with the Fatigue Severity Scale (FSS), Montreal Cognitive Assessment (MoCA), Patient Health Questionnaire (PHQ-9), Headache Impact Test (HIT), Pittsburgh Sleep Quality Index (PSQI), and DePaul Symptom Questionnaire (DSQ-PEM) to characterize fatigue, cognitive impairment, depression/anxiety, headache, sleeplessness, and post-exertional malaise respectively.
Our paper identified appropriate PROM instruments that can effectively capture the diverse impacts of LC. By utilizing these validated instruments, we can better understand and manage LC.
个体在清除严重急性呼吸综合征冠状病毒 2（SARS-CoV-2）感染后可能会出现一系列症状。这种情况被称为长新冠（LC）或新冠后状况（PCC）。尽管迄今为止已经记录了相当数量的症状，但仍存在一个关键挑战，即对 LC 结局进行稳健的特征描述。本综述旨在评估特性、确定差距，并为可用于全面描述 LC 的相关描述性和评估性患者报告结局测量（PROM）工具提供建议。
为了实现这一目标，我们确定并回顾了迄今为止为患有 LC 的人群开发和验证的描述性和评估性 PROM 工具。我们的综述评估了它们的特性、确定了差距，并为描述 LC 推荐了合适的 PROM。为了全面而稳健地描述 LC，我们接下来确定、审查并选择了（在患者合作伙伴的输入下）与最常报告的 LC 症状相关的 PROM。评估标准包括心理测量证据、交付模式、成本和管理时间。
传统矩阵映射显示，新冠后功能状态量表（PCFS）是一种选择工具，用于主要因为它涵盖的全面领域，以及文献中报告的大量心理测量证据。该工具可以与疲劳严重程度量表（FSS）、蒙特利尔认知评估（MoCA）、患者健康问卷（PHQ-9）、头痛影响测试（HIT）、匹兹堡睡眠质量指数（PSQI）和德保罗症状问卷（DSQ-PEM）有效配对，分别用于描述疲劳、认知障碍、抑郁/焦虑、头痛、失眠和运动后不适。
我们的论文确定了适当的 PROM 工具，可以有效地捕捉 LC 的多种影响。通过使用这些经过验证的工具，我们可以更好地理解和管理 LC。
