Web-based electronic patient-reported outcomes (ePRO) measures are increasingly used to facilitate patient-centered health assessments. However, it is unknown if ePRO completion is feasible for recently ill intensive care unit (ICU) survivors and their families.Objective
To develop and evaluate the usability of a novel ePRO system (ePRO to Support People and Enhance Recovery [ePROSPER]) among ICU survivors and their families within an ongoing clinical trial.Methods
Paper-based PROs were iteratively adapted to electronic forms (ePROs). Then, the usability of ePROSPER was assessed among 60 patients, their family members, and PRO and programming experts via questionnaires (eg, Systems Usability Scale), “think aloud” open-ended feedback, task completion times, and error rates.Results
Input from patients and their families was used to incorporate user-experience modifications into ePROSPER. This feedback also led to inclusion of automated reminders for questionnaire completion and real-time alerts for staff triggered by high symptom levels. Median usability scores increased over testing cycles from 40 to 73 to 95, nearing the maximum score and showing excellent usability. All users completed ePROSPER within 20 minutes; 87% preferred it to a written version. ePROSPER was then implemented in a clinical trial without data errors.Conclusions
Automated ePRO systems can be successfully integrated in a post-ICU clinical trial setting. The value of integrating such systems in direct clinical care should be assessed in future studies.
Critical illness can affect areas of emotional, physical, and social functioning in important ways. These health outcomes are typically assessed in clinical research settings by administering standardized patient-reported outcomes (PRO) questionnaires in person, by telephone, or by mail. This approach, however, presents challenges related to patient-centeredness as well as research efficiency and accuracy.1 Collecting potentially sensitive data such as data on psychological distress in personal interviews may result in discomfort, filtering, or bias.2