Development and Validation of the Long Coronavirus Disease (COVID) Symptom and Impact Tools: A Set of Patient-Reported Instruments Constructed From Patients’ Lived Experience
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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.
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SciScore for 10.1101/2021.03.18.21253903: (What is this?)
Please note, not all rigor criteria are appropriate for all manuscripts.
Table 1: Rigor
NIH rigor criteria are not applicable to paper type.Table 2: Resources
Software and Algorithms Sentences Resources 23 The study was nested within ComPaRe (Communauté de Patients pour la Recherche, www.compare.aphp.fr), an e-cohort of patients with chronic conditions who volunteer to participate in research by regularly answering patient reported outcome measures (PROMs) and patient reported experience measures (PREMs).24 Because of the similarities between long covid and chronic conditions, recruitment in ComPaRe was extended to patients reporting symptoms of covid-19 lasting more than three weeks past initial onset. ComPaResuggested: (COMPARE, RRID:SCR_000855)Results from OddPub: We did not detect …
SciScore for 10.1101/2021.03.18.21253903: (What is this?)
Please note, not all rigor criteria are appropriate for all manuscripts.
Table 1: Rigor
NIH rigor criteria are not applicable to paper type.Table 2: Resources
Software and Algorithms Sentences Resources 23 The study was nested within ComPaRe (Communauté de Patients pour la Recherche, www.compare.aphp.fr), an e-cohort of patients with chronic conditions who volunteer to participate in research by regularly answering patient reported outcome measures (PROMs) and patient reported experience measures (PREMs).24 Because of the similarities between long covid and chronic conditions, recruitment in ComPaRe was extended to patients reporting symptoms of covid-19 lasting more than three weeks past initial onset. ComPaResuggested: (COMPARE, RRID:SCR_000855)Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data when possible (see Nature blog).
Results from LimitationRecognizer: We detected the following sentences addressing limitations in the study:This study has limitations. Generalisation of the estimates obtained in this study must be cautious. Our study recruited volunteer patients who reported persistent symptoms. This might have selected younger, more educated, and more often female patients willing to share their experiences with others and/or with more severe conditions. Nonetheless, we were able to involve and validate our instrument in a diverse sample of participants by using a broad media campaign and a call for participation on the “TousAntiCOVID” app.41 Second, our study may not be appropriate for examining the longitudinal impact of the disease. Although we recruited patients with various times from symptom onset, the assessment of symptoms and impact was cross-sectional. Future work following up patients with standardised, validated tools is required to investigate the duration of the disease and the course of the symptoms over time. Finally, in view of the limited number of patients who were hospitalised in ICUs in our study, we cannot confirm that our tool is suitable for measuring the consequences of ICU on patients. According to the United Kingdom Office for National Statistics, 10% of people who were infected with SARS-CoV-2 still experience symptoms after three months, including those whose acute infection was asymptomatic.42 With about 100 million cases of COVID-19 worldwide, long covid may well affect millions of patients. The severe burden of illness and the impairment of quality of life associa...
Results from TrialIdentifier: No clinical trial numbers were referenced.
Results from Barzooka: We did not find any issues relating to the usage of bar graphs.
Results from JetFighter: We did not find any issues relating to colormaps.
Results from rtransparent:- Thank you for including a conflict of interest statement. Authors are encouraged to include this statement when submitting to a journal.
- Thank you for including a funding statement. Authors are encouraged to include this statement when submitting to a journal.
- No protocol registration statement was detected.
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