Lai-Kwon Julia, Rutherford Claudia, Best Stephanie, Ly Thai, Zhang Iris, Devereux Catherine, Herath Dishan, Burbury Kate, Jefford Michael
Department of Medical Oncology, Peter MacCallum Cancer Centre, Melbourne, Australia.
Department of Health Services Research, Peter MacCallum Cancer Centre, Melbourne, Australia.
Support Care Cancer. 2024 Dec 2;32(12):843. doi: 10.1007/s00520-024-09034-9.
Utilising electronic patient-reported outcomes (ePRO) to monitor symptoms can improve patient outcomes. However, ePRO systems are typically not co-designed with end-users which may limit their utility and long-term sustainability. We aimed to co-design a real-time ePRO symptom monitoring system for immune checkpoint inhibitor (ICI) toxicities.
We conducted three co-design workshops at an Australian quaternary cancer centre. Participants were patients who had received/were receiving ICI or their caregivers, managing clinicians, administration staff, and electronic medical record (EMR) analysts. Workshop 1 identified preferences for an ideal ePRO system, informing the development of a prototype and generic workflow. Workshop 2 sought feedback on the prototype and workflow. Workshop 3 reviewed the updated prototype and adapted the generic workflow to create a site-specific workflow. Workshop transcripts were analysed thematically.
Twenty-seven participants were included. Themes relating to system content and functionality included the need for customisation according to anticipated ICI toxicities; maximising patient accessibility, comprehension, and usability; providing ICI-specific self-management advice; and maximising clinician interpretability and usability. Themes relating to the model of care included the importance of maintaining the "human element" within the ePRO system, providing 24-hour support, alignment with existing clinical workflows, and automation of symptom monitoring processes using the EMR.
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.
利用电子患者报告结局（ePRO）来监测症状可改善患者预后。然而，ePRO系统通常并非与最终用户共同设计，这可能会限制其效用和长期可持续性。我们旨在共同设计一个用于免疫检查点抑制剂（ICI）毒性的实时ePRO症状监测系统。
我们在澳大利亚一家四级癌症中心举办了三次共同设计研讨会。参与者包括接受过/正在接受ICI治疗的患者或其护理人员、主治医生、行政人员以及电子病历（EMR）分析师。研讨会1确定了对理想ePRO系统的偏好，为原型和通用工作流程的开发提供了信息。研讨会2征求了对原型和工作流程的反馈意见。研讨会3审查了更新后的原型，并调整通用工作流程以创建特定于该机构的工作流程。对研讨会记录进行了主题分析。
共纳入27名参与者。与系统内容和功能相关的主题包括：需要根据预期的ICI毒性进行定制；最大限度地提高患者的可及性、理解性和易用性；提供特定于ICI的自我管理建议；以及最大限度地提高临床医生的可解释性和易用性。与护理模式相关的主题包括在ePRO系统中保持“人文因素”的重要性、提供24小时支持、与现有临床工作流程保持一致以及使用EMR实现症状监测流程的自动化。
通过共同设计让广泛的利益相关者尽早参与，可能会提高ePRO系统的相关性、采用率和可持续性。未来的工作将包括对原型进行可用性和可接受性测试，然后将其应用于常规护理。
