Development and Validation of the Long Coronavirus Disease (COVID) Symptom and Impact Tools: A Set of Patient-Reported Instruments Constructed From Patients' Lived Experience. (29th April 2021)

• Record Type: Journal Article
• Authors: Tran, Viet-Thi; Riveros, Carolina; Clepier, Bérangère; Desvarieux, Moïse; Collet, Camille; Yordanov, Youri; Ravaud, Philippe
• Is Part Of: Clinical infectious diseases. Volume 74:Number 2(2022)
• Page Start: 278
• Page End: 287
• Publication Date: 2021-04-29
• Subjects: patient-reported outcome -- COVID-19 -- long COVID; Communicable diseases -- Periodicals; 616.905
• DOI: 10.1093/cid/ciab352
• Languages: English
• ISSNs: 1058-4838

Abstract

Abstract: Background: To develop and validate patient-reported instruments, based on patients' lived experiences, for monitoring the symptoms and impact of long coronavirus disease (covid). Methods: The long covid Symptom and Impact Tools (ST and IT) were constructed from the answers to a survey with open-ended questions to 492 patients with long COVID. Validation of the tools involved adult patients with suspected or confirmed coronavirus disease 2019 (COVID-19) and symptoms extending over 3 weeks after onset. Construct validity was assessed by examining the relations of the ST and IT scores with health-related quality of life (EQ-5D-5L), function (PCFS, post-COVID functional scale), and perceived health (MYMOP2, Measure yourself medical outcome profile 2). Reliability was determined by a test-retest. The "patient acceptable symptomatic state" (PASS) was determined by the percentile method. Results: Validation involved 1022 participants (55% with confirmed COVID-19, 79% female, and 12.5% hospitalized for COVID-19). The long COVID ST and IT scores were strongly correlated with the EQ-5D-5L (rs = −0.45 and rs = −0.59, respectively), the PCFS (rs = −0.39 and rs = −0.55), and the MYMOP2 (rs = −0.40 and rs = −0.59). Reproducibility was excellent with an interclass correlation coefficient of 0.83 (95% confidence interval .80 to .86) for the ST score and 0.84 (.80 to .87) for the IT score. In total, 793 (77.5%) patients reported an unacceptable symptomatic state, thereby setting the PASS for the long covid IT score at 30 (28 to 33). Conclusions: The long covid ST and IT tools, constructed from patients' lived experiences, provide the first validated and reliable instruments for monitoring the symptoms and impact of long covid. Abstract : We developed the long COVID Symptom and Impact Tools from the experiences of 492 patients, captured during a survey with open-ended questions, and assessed their validity and reliability in a sample of 1022 patients with long COVID.