Background
Electronic patient-reported outcome (ePRO) systems can help support people receiving immune checkpoint inhibitors (ICI) to self-monitor for and manage immune-related adverse events. However, existing ePRO systems are typically not co-designed with end-users, which may limit their utility and long-term sustainability. Therefore, we aimed to co-design an ePRO system with key stakeholders to monitor for ICI toxicities.
Methods
Participants were patients who had received/ were receiving ICI or their caregivers, managing clinicians, administration staff and electronic medical record (EMR) analysts. Three co-design workshops were conducted at an Australian quaternary cancer centre. Workshop 1 identified preferences for an ideal ePRO system, informing the development of a prototype. Workshop 2 sought feedback on the prototype. Workshop 3 reviewed the updated prototype and developed a centre-specific ePRO symptom monitoring workflow. Thematic analysis was conducted on recorded workshop transcripts.
Results
27 participants (9 patients, 4 caregivers, 4 oncologists, 4 nurses, 2 pharmacists, 2 clinic administrators, 2 EMR analysts) took part in 9 workshops (3 workshop 1, 3 workshop 2, 3 workshop 3) from October 2023-March 2024. Themes relating to ePRO system content and functionality included the need for customisation according to anticipated ICI toxicities; the importance of maximising patient accessibility, comprehension and usability; providing ICI-specific content to empower patients and caregivers to self-manage; and the importance of maximising clinician interpretability and usability. Themes relating to model of care included the importance of maintaining the ‘human element’ within the ePRO system, providing 24-hour support, alignment of the ePRO symptom monitoring procedures with existing clinical workflows, and automation of ePRO monitoring processes using the EMR. Illustrative quotes will be presented.
Conclusions
Early, broad stakeholder engagement through co-design may improve the relevance, uptake and sustainability of ePRO systems. Future work will involve usability and acceptance testing of the prototype, followed by implementation into routine care.