JMIR Publications

ABSTRACT

Background:

Long Covid (LC) or Post-COVID-19 Syndrome is a multisystem condition characterised by persistent symptoms beyond 4 weeks after the SARS-Cov2 infection. There are more than 60 million people with LC (pwLC) worldwide needing prompt assessment, diagnosis, monitoring of the condition, with a large fraction requiring specialist help from a multidisciplinary team of healthcare professionals (HCPs). Consequently, there is a need for a scalable interactive digital system used by both pwLC and HCPs that enables the capture of the breadth of symptoms and their impact on health using patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs).

Objective:

To develop and implement a novel LC digital PROMs platform for a) the secure collection of PROM data from pwLC; b) enabling users to monitor symptoms longitudinally and assess response to treatment; c) generating reports for the electronic health records; d) providing summary reports for LC services based on national requirements; and e) facilitate the sharing of relevant data with authorised research teams to accelerate our understanding of this new condition and evaluate new strategies to manage LC.

Methods:

We undertook a) requirement analysis with pwLC, HCPs and researchers to identify the needs of the digital PROM platform and determine its required functionalities; b) designed and developed a clinically useful web portal for staff and a mobile application for patients, with a web-based alternative application to mobile to improve patient and staff choice, limit the risk of digital exclusion, and account for variability across services; c) determined the PROMs and PREMs that LC services would prefer to use on the platform and d) designed the summary report function that can be generated for each user for the electronic health record and reporting to national health authorities.

Results:

An interactive DPROM-LC to record LC symptom profile, condition severity, functional disability, and quality of life, based on the C19-YRS (Yorkshire Rehabilitation Scale) and other PROMs and PREMs was developed. Individual-level medical information and details on the COVID-19 illness can be captured systematically. The platform generates easy-to-understand scores, radar plots and line graphs for pwLC to self-monitor their condition and HCPs to assess the natural course of the condition and response to interventions. Clinics can configure a suite of PROMs and PREMs based on their local and national service and commissioning requirements, and support research studies which require large-scale data collection on PROMs. DPROM-LC enables automatic aggregate data analysis for services to undertake service evaluation and cost-effectiveness analysis. The DPROM-LC generated summary report can be uploaded to the electronic health records of pwLC.

Conclusions:

A multifunctional DPROM-LC to assess, grade and monitor LC has been developed. Future research will analyse the system's usability in specialist LC clinical services and research studies.