A Web-Based Self-Management Support Prototype for Adults With Chronic Kidney Disease (My Kidneys My Health): Co-Design and Usability Testing

Abstract

Background 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. Objective 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. Methods 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. Results 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. Conclusions 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.

Supporting Healthy Aging through the Scale-Up, Spread, and Sustainability of Assistive Technology Implementation: A Rapid Realist Review of Participatory Co-Design for Assistive Technology with Older Adults

“…One of the most widely observed findings in the participatory co-design examples we reviewed in the literature, is that not only should “end-users” (i.e., older adults) be involved more in the research/design process, but that a wide array of “stakeholders” that are non-researchers/non-designers need to be involved as full participants as well (Shaw et al, 2017). As Donald et al (2021) highlights,“[m]eaningful involvement in a co-design process can lead to intuitive and functional AT” (p. 11). Participatory co-design of technology supporting older adults aging in place requires ongoing evaluation with the involvement of older adults (Sumner et al, 2020).…”

A Research Protocol for Implementation and Evaluation of a Patient-Focused eHealth Intervention for Chronic Kidney Disease

“…The evidence-informed My Kidneys My Health website ( www.mykidneysmyhealth.com ) was co-developed using a systematic, user-centered design process previously described (Donald et al, 2021a ). The results of our explanatory sequential mixed-methods feasibility study demonstrated that the My Kidneys My Health website had high user acceptance, with a statistically significant increase in perceived self-efficacy sub-scale, gaining information (Donald et al, 2021b ).…”

“…My Kidneys My Health was designed based on a conceptual framework identifying optimal design features for eHealth interventions (i.e., interactivity between social context and support, direct contact with the intervention, tailored information, and self-management) (Morrison et al, 2012 ), patient preferences (Donald et al, 2019b ), and behavior change theory (Baay et al, 2019 ). The website supports self-management by “informing” (chronic kidney disease related information); “activating” (prompts/tools to encourage action to manage chronic kidney disease and enhance quality of life); and “collaborating” (links/tools that lead to interaction and engagement with health care professionals and peers) (Donald et al, 2021a ; Gagliardi et al, 2015 ). Specific elements of the website include interactive tools; personalized food list and health care professionals question list; and multimedia education and resources.…”

“…Guided by the Knowledge-to-Action Framework, key stakeholders (i.e., patient partners, clinicians, policy makers, and organizations involved in the care of individuals with chronic kidney disease) were engaged in the co-design of the evidence-informed My Kidneys My Health website (Donald et al, 2021a ). We will continue to work with these stakeholders to achieve quality implementation, applying the Interactive Systems Framework (ISF) to identify stakeholder roles and to situate the QIF within the clinical and research context.…”

“…To address these knowledge gaps, we undertook a theory-informed, person-centered approach to develop an eHealth tool, the My Kidneys My Health website, that is concordant with patients’ values, needs, and preferences for chronic kidney disease self-management support (Donald et al, 2021a ). The focus of this paper is to describe the process of implementation and evaluation of the My Kidneys My Health website.…”