Focus Group Expresses Needs, Wants for a Mobile CKD Management App

A focus group consisting of patients with chronic kidney disease (CKD) as well as CKD providers and researchers shared what they deem necessary and helpful to include in future mobile CKD management applications.

Using answers from a multidimensional focus group that included patients, providers, and researchers regarding what they feel mobile management applications for chronic kidney disease (CKD), investigators developed a new app to help ease issues present in health care and improve communication between stakeholders.

The development study, published in JMIR Human Factors, was the first to describe the process of building a mobile app that is specific to patients with CKD. It’s also the first to include the voices of individuals with clinical and methodological expertise with the condition during the development process.

“Decision aids help patients become active partners in medical decision-making and include products such as educational booklets, tutorials, and mobile apps….A mobile app that integrates domains of clinical care and health behavior promotion may be useful to facilitate CKD self-management, and our mobile app was developed in close collaboration with stakeholders in CKD,” the investigators wrote.

Proper management of CKD can help patients delay or prevent kidney failure and mitigate risk of developing cardiovascular disease. Disease self-management is recognized as a intervention for improving the health of patients with chronic conditions, allowing for patients and providers to work more collaboratively in disease management. Self-management of everyday life involves patients achieving and maintaining as much or a “normal” life as possible and functioning within the parameters set by living with chronic conditions.

The investigators said that the COVID-19 pandemic has increased the need for self-management support need to be easily accessible to patients, not require patients to spend extensive time away from home, potentially through the use of a smartphone. Current information technology tools include mobile apps, web-based portals, and web-based educational or coaching initiatives. However, creators of these tool did not include the voices of patients with CKD during the development process, leading to the tools garnering low ratings for clinical utility and usability because they did not address patient safety concerns.

A co-design approach was utilized to create the focus group and the application. The focus group comprised of 4 patients with stage 3 or 4 nondialysis-dependent CKD, a kidney transplant recipient, a caretaker, 2 primary care physicians, 3 pharmacists, a nephrologist, a cardiologist, a registered nurse from a nephrology clinic, a researcher in biomedical informatics, 2 health services and CKD researchers, a systems developer, and 2 programmers. The providers were recruited from the Loyola University Medical Center (LUMC) and the patients were recruited from the LUMC nephrology clinic in Maywood, Illinois.

The 2 focus group sessions took place in-person and online, featuring semi structured interviews. After the app was developed, the stakeholders were given access to test and was modified based on their reactions.

Some of the challenges expressed by the group that should be addressed in self-management apps included maintaining a healthy diet, lack of health literacy, feeling overwhelmed with provider-shared information, lack of knowledge of CKD and how food impacts it, CKD stigma, and feelings of stress and low motivation.

The group expressed that they’d like to see an app that had easily understandable language, easy navigation that doesn’t require asking a younger person to help, allowance for easy communication and data sharing with providers, and allowance for providers and patients to share CKD management strategies.

The application that was developed using the responses from the group included:

  • Easy-to-understand feedback mechanisms
  • Simple data sharing with providers in the form of a user-friendly report that can be emailed and uploaded to an electronic health record
  • A mechanism that allows for video chat meetings with providers or members of a patient support group
  • Educational material on CKD and any related symptoms
  • A feature to enter symptom information, keep track of their diet, and keep a list of medications
  • A feature that allows patients to select predetermined self-management goals or to create their own

Unanimously, the focus group participants agreed that a CKD mobile app could be helpful for disease self-management.

The investigators noted the small sample of participants as a limitation, saying that it may have limited the generalizability of their findings. They added that they plan to examine the acceptability and usability of the app among patients with early and advanced-stage CKD as well as their providers in future analyses.

“Subsequent studies among patients with CKD, caregivers, and care providers recruited from a variety of settings would be necessary to assess the acceptability and usability of the mobile app,” they wrote.

Reference

Markossian TW, Boyda J, Taylor J, et al. A mobile app to support self-management of chronic kidney disease: Development study. JMIR Hum Factors. October-December 2021;8(4):e29197. doi:10.2196/29197