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

Maoliosa Donald; Heather Beanlands; Sharon E Straus; Michelle Smekal; Sarah Gil; Meghan J Elliott; Gwen Herrington; Lori Harwood; Blair Waldvogel; Maria Delgado; Dwight Sparkes; Allison Tong; Allan Grill; Marta Novak; Matthew Thomas James; K Scott Brimble; Susan Samuel; Karen Tu; Janine Farragher; Brenda R Hemmelgarn

doi:10.2196/22220

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

JMIR Form Res. 2021 Feb 9;5(2):e22220. doi: 10.2196/22220.

Authors

Maoliosa Donald¹, Heather Beanlands², Sharon E Straus³, Michelle Smekal¹, Sarah Gil¹, Meghan J Elliott¹, Gwen Herrington⁴, Lori Harwood⁵, Blair Waldvogel⁴, Maria Delgado⁴, Dwight Sparkes⁴, Allison Tong⁶, Allan Grill³, Marta Novak³, Matthew Thomas James¹, K Scott Brimble⁷, Susan Samuel¹, Karen Tu³, Janine Farragher¹, Brenda R Hemmelgarn⁸

Affiliations

¹ Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada.
² Daphne Cockwell School of Nursing, Ryerson University, Toronto, ON, Canada.
³ Department of Family & Community Medicine, University of Toronto, Toronto, ON, Canada.
⁴ Can-SOLVE CKD Network, Vancouver, BC, Canada.
⁵ London Health Sciences Centre, London, ON, Canada.
⁶ Sydney School of Public Health, The University of Sydney, Sydney, Australia.
⁷ Department of Medicine, McMaster University, Hamilton, ON, Canada.
⁸ Faculty of Medicine and Dentistry, University of Alberta, Edmonton, AB, Canada.

PMID: 33560245
PMCID: PMC7902181
DOI: 10.2196/22220

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.

Keywords: chronic kidney disease; integrated knowledge translation; knowledge-to-action framework; patient engagement; patient-oriented research; self-management; web-based intervention.

©Maoliosa Donald, Heather Beanlands, Sharon E Straus, Michelle Smekal, Sarah Gil, Meghan J Elliott, Gwen Herrington, Lori Harwood, Blair Waldvogel, Maria Delgado, Dwight Sparkes, Allison Tong, Allan Grill, Marta Novak, Matthew Thomas James, K Scott Brimble, Susan Samuel, Karen Tu, Janine Farragher, Brenda R Hemmelgarn. Originally published in JMIR Formative Research (http://formative.jmir.org), 09.02.2021.