A focus group of chronic kidney disease (CKD) patients as well as CKD providers and researchers shared what they found necessary and useful to include in future CKD management mobile applications. .
Using responses from a multidimensional focus group of patients, providers and researchers about their feelings about chronic kidney disease (CKD) mobile management applications, the researchers developed a new app to help alleviate problems present in healthcare and improve communication between stakeholders.
The development study, published in Human Factors JMIR, was the first to describe the process of creating a mobile application specific to patients with CRF. It is also the first to include the voices of people with clinical and methodological expertise in the disease 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 applications… A mobile application that integrates the areas of clinical care and Promoting health behaviors can be useful in facilitating self-management of CKD, and our mobile app was developed in close collaboration with CKD stakeholders, ”the investigators wrote.
Proper management of CRF can help patients delay or prevent kidney failure and lower the risk of developing cardiovascular disease. Self-management of disease is recognized as an intervention aimed at improving the health of patients with chronic diseases, enabling patients and providers to work more collaboratively in disease management. Self-management of daily living involves patients achieving and maintaining a “normal” life as much as possible and functioning within defined parameters while living with chronic diseases.
Investigators said the COVID-19 pandemic has increased the need for self-management support that must be readily available to patients, not requiring patients to spend a lot of time away from home, potentially via the use of a smartphone. Current IT tools include mobile apps, web portals, and web-based education or coaching initiatives. However, the creators of these tools did not include the voices of patients with CRF during the development process, which led to the tools receiving low marks for their clinical utility and ease of use, as they were not responding to patient safety concerns.
A co-design approach was used to create the focus group and the app. The focus group consisted of 4 patients with non-dialysis stage 3 or 4 CRF, one kidney transplant recipient, one caregiver, 2 primary care physicians, 3 pharmacists, one nephrologist, one cardiologist, one registered nurse. ” a nephrology clinic, a biomedical informatics researcher, 2 health services and CKD researchers, a systems developer and 2 programmers. Providers were recruited from Loyola University Medical Center (LUMC) and patients were recruited from the LUMC Nephrology Clinic in Maywood, Illinois.
The 2 focus group sessions took place in person and online, with semi-structured interviews. After the development of the app, stakeholders were given access to the test and were modified based on their feedback.
Some of the challenges expressed by the group that should be addressed in the self-management applications included maintaining a healthy diet, lack of health knowledge, feeling overwhelmed by information shared by providers, lack of knowledge of IRC and the impact of diet, stigma of IRC, and feelings of stress and low motivation.
The group expressed that they would like to see an application that has easily understood language, easy navigation that does not require asking for help from a younger person, a possibility of communication and data sharing with providers, and an opportunity for providers and patients to share CRF management strategies.
The app that was developed from the group’s responses included:
- Easy to understand feedback mechanisms
- Easy sharing of data 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 video chat meetings with providers or members of a patient support group
- Educational material on CRF and all associated symptoms
- A function to enter symptom information, follow their diet and keep a list of medications
- A feature that allows patients to select predetermined self-management goals or create their own
Unanimously, focus group participants agreed that a CKD mobile app could be useful for self-management of the disease.
Investigators noted the small sample of participants as a limitation, saying it may have limited the generalizability of their results. They added that they plan to examine the acceptability and usability of the application in patients with early and late-stage CRF as well as their providers in future analyzes.
“Further studies with CKD patients, caregivers and providers recruited from a variety of settings would be needed to assess the acceptability and usability of the mobile application,” they wrote.
Markossian TW, Boyda J, Taylor J, et al. A mobile application to support the self-management of chronic kidney disease: a development study. JMIR Humor Factors. Oct-Dec 2021; 8 (4): e29197. doi: 10.2196 / 29197