Donald Maoliosa, Beanlands Heather, Straus Sharon E, Smekal Michelle, Gil Sarah, Elliott Meghan J, Herrington Gwen, Harwood Lori, Waldvogel Blair, Delgado Maria, Sparkes Dwight, Tong Allison, Grill Allan, Novak Marta, James Matthew Thomas, Brimble K Scott, Samuel Susan, Tu Karen, Farragher Janine, Hemmelgarn Brenda R
Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada.
Daphne Cockwell School of Nursing, Ryerson University, Toronto, ON, Canada.
JMIR Form Res. 2021 Feb 9;5(2):e22220. doi: 10.2196/22220.
Supporting patients to self-manage their chronic kidney disease (CKD) has been identified as a research priority by patients with CKD and those who care for them. Self-management has been shown to slow CKD progression and improve the quality of life of individuals living with the disease. Previous work has identified a need for a person-centered, theory-informed, web-based tool for CKD self-management that can be individualized to a patient's unique situation, priorities, and preferences. We addressed this gap using an integrated knowledge translation method and patient engagement principles.
The aim of this study is to conduct systematic co-design and usability testing of a web-based self-management prototype for adults with CKD (nondialysis and nontransplant) and their caregivers to enhance self-management support.
A multistep, iterative system development cycle was used to co-design and test the My Kidneys My Health prototype. The 3-step process included creating website features and content using 2 sequential focus groups with patients with CKD and caregivers, heuristic testing using the 10 heuristic principles by Nielsen, and usability testing through in-person 60-minute interviews with patients with CKD and their caregivers. Patients with CKD, caregivers, clinicians, researchers, software developers, graphic designers, and policy makers were involved in all steps of this study.
In step 1, 18 participants (14 patients and 4 caregivers) attended one of the 2 sequential focus groups. The participants provided specific suggestions for simplifying navigation as well as suggestions to incorporate video, text, audio, interactive components, and visuals to convey information. A total of 5 reviewers completed the heuristic analysis (step 2), identifying items mainly related to navigation and functionality. Furthermore, 5 participants completed usability testing (step 3) and provided feedback on video production, navigation, features and functionality, and branding. Participants reported visiting the website repeatedly for the following features: personalized food tool, my health care provider question list, symptom guidance based on CKD severity, and medication advice. Usability was high, with a mean system usability score of 90 out of 100.
The My Kidneys My Health prototype is a systematically developed, multifaceted, web-based CKD self-management support tool guided by the theory and preferences of patients with CKD and their caregivers. The website is user friendly and provides features that improve user experience by tailoring the content and resources to their needs. A feasibility study will provide insights into the acceptability of and engagement with the prototype and identify preliminary patient-reported outcomes (eg, self-efficacy) as well as potential factors related to implementation. This work is relevant given the shift to virtual care during the current pandemic times and provides patients with support when in-person care is restricted.
支持患者自我管理慢性肾脏病（CKD）已被CKD患者及其护理人员确定为研究重点。自我管理已被证明可以减缓CKD的进展，并改善患有该疾病个体的生活质量。先前的工作已经确定需要一种以患者为中心、基于理论、基于网络的CKD自我管理工具，该工具可以根据患者的独特情况、优先事项和偏好进行个性化定制。我们使用综合知识转化方法和患者参与原则解决了这一差距。
本研究的目的是对基于网络的CKD成人（非透析和非移植）及其护理人员自我管理原型进行系统的协同设计和可用性测试，以加强自我管理支持。
采用多步骤、迭代的系统开发周期对“我的肾脏我的健康”原型进行协同设计和测试。这个三步过程包括通过与CKD患者和护理人员进行2次连续的焦点小组讨论来创建网站功能和内容，使用尼尔森的10条启发式原则进行启发式测试，以及通过与CKD患者及其护理人员进行60分钟的面对面访谈进行可用性测试。CKD患者、护理人员、临床医生、研究人员、软件开发人员、平面设计师和政策制定者参与了本研究的所有步骤。
在第1步中，18名参与者（14名患者和4名护理人员）参加了2次连续焦点小组讨论中的一次。参与者提供了简化导航的具体建议，以及纳入视频、文本、音频、互动组件和视觉效果以传达信息的建议。共有5名评审员完成了启发式分析（第2步），确定了主要与导航和功能相关的项目。此外，5名参与者完成了可用性测试（第3步），并就视频制作、导航、功能和品牌提供了反馈。参与者报告称，他们因以下功能而多次访问该网站：个性化饮食工具、我的医疗服务提供者问题列表、基于CKD严重程度的症状指导以及用药建议。可用性很高，系统可用性平均得分为90分（满分100分）。
“我的肾脏我的健康”原型是一个系统开发的、多方面的、基于网络的CKD自我管理支持工具，由CKD患者及其护理人员的理论和偏好指导。该网站用户友好，通过根据用户需求定制内容和资源来提供改善用户体验的功能。一项可行性研究将深入了解该原型的可接受性和参与度，并确定初步的患者报告结果（如自我效能感）以及与实施相关的潜在因素。鉴于当前疫情期间向虚拟护理的转变，这项工作具有相关性，并在面对面护理受到限制时为患者提供支持。
