Mueller Emily L, Cochrane Anneli R, Campbell Madison E, Nikkhah Sarah, Miller Andrew D
Center for Pediatric and Adolescent Comparative Effectiveness Research, Indiana University, Indianapolis, IN, United States.
Section of Pediatric Hematology Oncology, Department of Pediatrics, Indiana University, Indianapolis, IN, United States.
JMIR Cancer. 2022 Mar 16;8(1):e33152. doi: 10.2196/33152.
Caregivers face new challenges and tasks when their child is diagnosed with cancer, which can be overwhelming. Mobile technology has the capacity to provide immediate support at their fingertips to aid in tracking symptoms, managing medication, and planning for emergencies.
The objective of this study is to engage directly with end users and proxies to co-design and create a mobile technology app to support caregivers in the medical management of their child with cancer.
We engaged directly with caregivers of children with cancer and pediatric oncology nurse coordinators (proxy end users) to co-design and create the prototype of the Cope 360 mobile health app. Alpha testing was accomplished by walking the users through a series of predetermined tasks that encompassed all aspects of the app including tracking symptoms, managing medications, and planning or practicing for a medical emergency that required seeking care in the emergency department. Evaluation was accomplished through recorded semistructured interviews and quantitative surveys to capture demographic information and measure the system usability score. Interviews were transcribed and analyzed iteratively using NVivo (version 12; QSR International).
This study included 8 caregivers (aged 33-50 years) of children with cancer, with most children receiving chemotherapy, and 6 nurse coordinators, with 3 (50%) of them having 11 to 20 years of nursing experience. The mean system usability score given by caregivers was 89.4 (95% CI 80-98.8). Results were grouped by app function assessed with focus on specific attributes that were well received and those that required refinement. The major issues requiring refinement included clarity in the medical information and terminology, improvement in design of tasks, tracking of symptoms including adjusting the look and feel of certain buttons, and changing the visual graph used to monitor symptoms to include date anchors.
The Cope 360 app was well received by caregivers of children with cancer but requires further refinement for clarity and visual representation. After refinement, testing among caregivers in a real-world environment is needed to finalize the Cope 360 app before its implementation in a randomized controlled trial.
当孩子被诊断出患有癌症时，照顾者会面临新的挑战和任务，这可能会让他们不堪重负。移动技术能够在他们指尖提供即时支持，以帮助追踪症状、管理药物以及制定应急计划。
本研究的目的是直接与终端用户及其代理人共同设计并创建一款移动技术应用程序，以支持照顾患有癌症孩子的照顾者进行医疗管理。
我们直接与患有癌症孩子的照顾者以及儿科肿瘤护理协调员（代理终端用户）合作，共同设计并创建了Cope 360移动健康应用程序的原型。通过引导用户完成一系列预定任务来进行阿尔法测试，这些任务涵盖了应用程序的各个方面，包括追踪症状、管理药物以及为需要在急诊科就诊的医疗紧急情况进行规划或演练。通过录制半结构化访谈和定量调查来进行评估，以获取人口统计学信息并测量系统可用性得分。访谈内容被转录，并使用NVivo（版本12；QSR国际公司）进行迭代分析。
本研究纳入了8名患有癌症孩子的照顾者（年龄在33至50岁之间），大多数孩子正在接受化疗，以及6名护理协调员，其中3名（50%）拥有11至20年的护理经验。照顾者给出的系统可用性平均得分为89.4（95%置信区间80 - 98.8）。结果按评估的应用程序功能进行分组，重点关注那些受到好评的特定属性以及需要改进的属性。需要改进的主要问题包括医疗信息和术语的清晰度、任务设计的改进、症状追踪（包括调整某些按钮的外观和感觉）以及更改用于监测症状的视觉图表以纳入日期锚点。
Cope 360应用程序受到了患有癌症孩子的照顾者的好评，但在清晰度和视觉呈现方面需要进一步改进。改进后，需要在现实环境中对照顾者进行测试，以便在将Cope 360应用程序用于随机对照试验之前对其进行最终完善。
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