Supported Research

Lay Abstract

Kidney transplant is the best therapy for children with end stage kidney disease. However, many families need more education about the transplant journey. While waiting for a transplant, patients go through complex medical testing that involves many healthcare specialists. After receiving the kidney transplant, patients must take antirejection medications every day. They must also have blood tests and medical appointments for life. To navigate the healthcare system, families must learn new, often complex, information. Currently there is a gap in pediatric transplant education. This can lead to anxiety for both patients and caregivers and poor health outcomes. Purpose: Our previous research shows that educational videos co-created with patients improves patient knowledge and satisfaction. Effective education for children and youth must be relatable and age appropriate. A video series, once created, is difficult to customize. Clearly, information needed by an 18-year-old may not be appropriate for someone who is 6. In addition, education cannot be presented to a 6-year-old and 18-year-old in the same way. A novel solution is needed to improve pediatric education. Method: We are developing a mobile application (app) to allow us to tailor education for specific patients / caregiver’s needs. This new app is called the Health Education and Learning Platform (HELP). Our goal is to create a library of resources for pediatric kidney transplant patients and caregivers, and to test ‘customizing’ education using the HELP app. First, we will gather existing resources and create a variety of patient education animations. Animations are helpful for explaining different parts of the transplant process. We will also record stories from patients, caregivers, and healthcare providers sharing their experiences and tips for success. Next, we will conduct a feasibility and acceptability study to evaluate use of the app. To study feasibility, we will measure health care provider use and patient / caregiver uptake. To study applicability, we will assess whether patients / caregivers find the app and resources helpful. To answer these questions, we will ask patients and caregivers who are either waiting for a transplant or have recently received a transplant to trial the app. Participants will be recruited from 5 sites across Canada. Healthcare providers will pick appropriate resources within the app for each individual patient or caregiver. Participants will receive an initial orientation to the app. After testing the app for 2 months, an evaluation survey will be provided. Participant usage data will be collected via the app, and questions related to technical issues or resources will be tracked. We will follow up with a virtual interview to learn about the participant’s experience using the app and resources. Anticipated Outcomes: Providing each patient with relatable information at the appropriate time could improve the kidney transplant experience. This study will guide modifications to either the app or the library as needed. The findings will also be used to design a further study that will test whether the HELP app improves the patient experience compared to the standard education. Patient Engagement: Currently patients and caregivers are helping us to create the HELP app. In this upcoming study, we have a caregiver as part of our research team who will be involved designing and conducting the study. We will also invite as many patients and caregivers as possible from across Canada to share stories about their transplant experience. This will help to make the app library more diverse and to provide more options for customizing education. Relevance to Patients/Community: Patient education should not be limited to a ‘one size fit’s all’ approach. Providing education that is tailored, timely, relevant, and relatable could reduce stress and anxiety for patients and caregivers. This could help families to navigate the healthcare system and improve the kidney transplant experience. This project will pave the way for future studies using the HELP app in the kidney transplant setting and beyond.