Al-Mondhiry Jafar, D'Ambruoso Sarah, Pietras Christopher, Strouse Thomas, Benzeevi Dikla, Arevian Armen C, Wells Kenneth B
Division of Medical Oncology, Department of Medicine, University of Southern California, Keck School of Medicine, Los Angeles, CA, United States.
Division of Hematology & Oncology, Department of Medicine, University of California, Los Angeles, Los Angeles, CA, United States.
JMIR Form Res. 2022 Jun 23;6(6):e33849. doi: 10.2196/33849.
Open design formats for mobile apps help clinicians and stakeholders bring their needs to direct, co-creative solutions. Palliative care for patients with advanced cancers requires intensive monitoring and support and remains an area in high need for innovation.
This study aims to use community-partnered participatory research to co-design and pretest a mobile app that focuses on palliative care priorities of clinicians and patients with advanced cancer.
In-person and teleconference workshops were held with patient and family stakeholders, researchers, and clinicians in palliative care and oncology. Question prompts, written feedback, semistructured interviews, and facilitated group discussions identified the core palliative care needs. Using Chorus, a no-code app-building platform, a mobile app was co-designed with the stakeholders. A pretest with 11 patients was conducted, with semistructured interviews of clinician and patient users for feedback.
Key themes identified from the focus groups included needs for patient advocacy and encouragement, access to vetted information, patient-clinician communication support, and symptom management. The initial prototype, My Wellness App, contained a weekly wellness journal to track patient-reported symptoms, goals, and medication use; information on self-management of symptoms; community resources; and patient and caregiver testimonial videos. Initial pretesting identified value in app-based communication for clinicians, patients, and caregivers, with suggestions for improving user interface, feedback and presentation of symptom reports, and gamification and staff coordinators to support patient app engagement.
The development of a mobile app using community-partnered participatory research is a low-technology and feasible intervention for palliative care. Iterative redesign and user interface expertise may improve implementation.
移动应用程序的开放设计格式有助于临床医生和利益相关者将他们的需求转化为直接的、共同创造的解决方案。晚期癌症患者的姑息治疗需要密集监测和支持，仍然是一个急需创新的领域。
本研究旨在利用社区合作参与式研究，共同设计并预测试一款专注于临床医生和晚期癌症患者姑息治疗优先事项的移动应用程序。
与患者及家属利益相关者、研究人员以及姑息治疗和肿瘤学领域的临床医生举行了面对面和电话会议形式的研讨会。通过问题提示、书面反馈、半结构化访谈和小组讨论确定了核心姑息治疗需求。使用无代码应用程序构建平台Chorus与利益相关者共同设计了一款移动应用程序。对11名患者进行了预测试，并对临床医生和患者用户进行了半结构化访谈以获取反馈。
焦点小组确定的关键主题包括患者宣传和鼓励的需求、获取经过审核的信息、患者与临床医生沟通支持以及症状管理。初始原型“我的健康应用程序”包含一个每周健康日志，用于跟踪患者报告的症状、目标和药物使用情况；症状自我管理信息；社区资源；以及患者和护理人员的推荐视频。初步预测试确定了基于应用程序的沟通对临床医生、患者和护理人员的价值，并提出了改进用户界面、症状报告反馈和呈现方式以及游戏化和配备工作人员协调员以支持患者应用程序参与度的建议。
利用社区合作参与式研究开发移动应用程序是一种用于姑息治疗的低技术且可行的干预措施。迭代重新设计和用户界面专业知识可能会改善应用程序的实施。
