JMIR Publications

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 that care for them. Self-management has been shown to slow CKD progression and improve the quality of life for 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 was to implement the systematic co-design and usability testing of a web-based self-management support prototype for adults with CKD (non-dialysis, non-transplant) and their caregivers.

Methods:

A multi-step, iterative system development cycle was used to co-design and test My Kidneys My Health prototype. The 3-step process included: (1) creating website features and content using two sequential focus groups with patients with CKD and caregivers; (2) heuristic testing using Nielsen’s 10 heuristic principles; (3) usability testing through in-person 60-minute interviews with patients with CKD and a caregiver. 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 two 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. Five reviewers completed the heuristic analysis (step 2), identifying items mainly related to navigation and functionality. Five 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:

My Kidneys My Health prototype is a systematically developed, multi-faceted CKD self-management web-based support tool guided by theory and preferences of patients with CKD and their caregivers. The website is user-friendly and provides features that improve the user experience by tailoring the content and resources to their needs. A feasibility study will provide insight into the acceptability of and engagement with the prototype, and identify preliminary patient reported outcomes (e.g., self-efficacy), as well as potential factors related to implementation. This work is relevant given the shift to virtual care during a pandemic era, providing patients with support when in-person care is restricted.