Review A review of Patient Reported Outcome Measures (PROMs) for characterizing Long COVID (LC)—merits, gaps, and recommendations 2024 Ejalonibu et al

Abstract

Background
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.

Methods
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.

Results
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.

Conclusion
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.

Plain language summary
Some individuals who once contracted the virus responsible for COVID-19 may continue to experience a range of symptoms persisting for more than 3 months. These symptoms include fatigue, difficulty sleeping, anxiety and difficulty breathing amongst others. This condition is known by many as Long COVID (LC). To understand the health outcomes of patients faced with this condition, standardized Patient Reported Outcome Measurement instruments (PROMs) are pivotal. PROMs are standardized questionnaires completed by patients to measure their symptoms, perceptions of health status, and/or functional well-being. In this paper, we have examined standardized instruments suitable for measuring LC outcomes. We conducted a comprehensive strength and weakness analysis of each instrument reviewed, guided by specific criteria. Based on our strength and weakness analyses, we identified several potential instruments that can be used to reports patients’ outcomes concerning LC. The data collected from PROMs provides valuable insights for healthcare practitioners and policy makers, enabling the enhancement of patient-centric care and serving as an instrument for systemic transformation.

Open access, https://link.springer.com/article/10.1186/s41687-024-00773-1

 

How doe this compare with MEA's current proposals
Basic PROM assessment re grades seems to be simple, though there are links to specific questionnaires for specific symptoms
Depression and anxiety may refer to inappropriate scales as ever.