An electronic patient-reported outcome symptom monitor: the Chinese experience with rapid development of a ready-to-go symptom monitor

• Published in: BMC public health Vol. 24; no. 1; pp. 2989 - 11
• Main Authors: Zhang, Jingyu, Guo, Qing, Chen, Jiaojiao, Liu, Yajie, Kang, Dan, Xiang, Rumei, Shi, Jiaheng, Yang, Jinliang, Tang, Xiaojun, Nie, Yuxian, Qiu, Jingfu, Wang, Xu, Yang, Zhu, Liu, Jie, Shi, Qiuling
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 29.10.2024; BioMed Central; BMC
• Subjects: Adolescent; Adult; Appetite loss; Asymptomatic; Cancer surgery; Care and treatment; China; Clinical outcomes; Communicable diseases; Coronaviruses; Cough; COVID-19; COVID-19 - diagnosis; COVID-19 - epidemiology; Data base management systems; Data collection; Data entry; Data storage; Data transmission; Development and progression; Disease transmission; Early experience; Electronic Patient-Reported Outcome; Electronic platform; Electronic systems; Encryption; Epidemics; Feasibility; Female; Health aspects; Humans; Infectious diseases; Information storage and retrieval; Literature reviews; Lung cancer; Male; Medical research; Medicine, Experimental; Middle Aged; Monitoring; Mortality; Pandemics; Patient outcomes; Patient Reported Outcome Measures; Patients; Project design; Project management; Public health; Quality of life; Questionnaires; Real time; Respiratory diseases; SARS-CoV-2; Sensitivity analysis; Severe acute respiratory syndrome; Severe acute respiratory syndrome coronavirus 2; Signs and symptoms; Sleep disorders; Smartphones; Sputum; Symptom; Symptom Assessment - methods; Symptom management; Telemedicine; Viral diseases; China; COVID-19; Electronic Patient-Reported Outcome; Symptom; Electronic platform
• ISSN: 1471-2458; 1471-2458
• DOI: 10.1186/s12889-024-20518-5

Monitoring symptoms is crucial for the early detection of disease progression and timely intervention, which is essential for reducing severe cases and mortality rates in rapidly spreading pandemics, such as COVID-19. Therefore, during infectious disease pandemics, the rapid development of real-time symptom monitoring platforms is essential. This study aimed to explore the urgent development process of an electronic system for patient-reported outcome monitoring in emergency situations. The development of the electronic patient-reported outcome COVID-19 symptom monitoring platform (ePRO-CoV-SM) included the following steps: (1) modifying an electronic patient-reported outcome symptom-reporting platform to assess patients with COVID-19 and validating its feasibility and sensitivity for longitudinal symptom measurement; (2) updating the system to accommodate the newly emerged severe acute respiratory syndrome coronavirus 2 BA.2.2 variant; and (3) applying it in real-world settings. Literature review, expert consultation, and subject-group discussions were used to develop symptom items. Response rate and missing item rate were used as validation indicators for ePRO-CoV-SM. The ePRO-CoV-SM (2.0) consists of a core set of symptom items, a WeChat mini program, an online project design backend, a management and communication front, and a database. During the 2020 verification, the response rate of ePRO symptom monitoring reached 89.47% and the item missing rate was 0.33%, the monitoring revealed that a considerable number of asymptomatic patients were experiencing undesirable symptoms during the isolation period. In its real-world application in 2022, the response rate was 85.93% and the item missing rate was 4.84%, the monitoring found the symptom burden was higher in the younger group (18-40 years old) than in the older group (40-67 years old), and over 30% of patients reported symptoms such as cough (36.08%), dry mouth (35.67%), sleep disorders (32.27%), appetite loss (32.17%), and sputum (30.79%) during the isolation period. Electronic patient-reported outcome measurement was demonstrated to be sensitive and feasible for monitoring symptoms in patients with COVID-19. By integrating smartphone-based data collection with real-time online data transmission and secure data storage using Secure Sockets Layer encryption, an electronic platform for monitoring critical symptoms can be rapidly established in emergency situations.