ePROs and eConsent for Long COVID (TLC)

The University of Birmingham, the National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI).

Background

Treatment & Understanding of Long COVID (TLC) is a two-year project pioneered by the University of Birmingham funded through the NIHR and UKRI that follows a UK-wide joint research call to fund ambitious and comprehensive Long COVID research.

Challenge

The study required the development of a new ePRO measure, The Symptom Burden Questionnaire™ (SBQ™) for Long COVID to capture the unique symptoms of the disease. Developed by the team at the University of Birmingham, the SBQ™ asks patients to log their responses to a series of questions designed to understand symptom burden in adults with Long COVID.

Solution

Centralising the study wasn’t feasible due to the commitment that patients would need to make and the requirement for frequent responses to the study’s SBQ™, so Aparito delivered the SBQ™ via the Atom5™ app’s ePRO module to provide critical support and information to empower patients in self-managing long COVID and report their symptoms.

To manage ongoing patient consent we deployed our eConsent module to provide a regulatory-compliant solution.

We worked closely with national UK Long COVID support groups at each stage of the app’s development to ensure its acceptability, usability, and relevance to patients. This approach empowered Aparito to evolve and develop a new approach to monitoring Long COVID symptoms.

Outcomes

Aparito’s Atom5™ platform allows patients to report in near real-time their health status and specific COVID-19 symptoms to a nominated clinician team, and, using their findings, the researchers will co-produce with patients a targeted intervention for Long COVID that’s tailored to individual patient needs.