VADventure

Mobile Application for Outpatient Pediatric Ventricular Assist Device Training

in collaboration with anisah khan, jessica hartz, monika jain, rachita pandya, dr. patricia bastero, dr. paul checchia

Problem Statement

Many pediatric patients who face heart failure require an immediate heart transplant. However, since viable hearts are not readily available, surgeons may install a ventricular assist device (VAD) to maintain circulatory function. The patient spends anywhere from weeks to months  in the hospital post-surgery for recovery and VAD maintenance, but the goal is to eventually discharge patients with the VAD installed. In most cases, the caregiver, who is usually a family member, is faced with maintenance of the VAD. While caregivers receive some initial training from the VAD coordinator, the machine itself can be complicated, as it protrudes out of the skin and involves wires and battery power. The problem presented to us expressed a concern in training methods and curriculums used to prepare the caregiver for a pediatric patient with a VAD.

Analyzing current and past approaches utilized for VAD training, certain issues that persist include the lack of involvement of children in their own care. While it is difficult to include toddlers and infants in the VAD training programs, older adolescent children would benefit from being actively involved in learning how to operate their own device as well as about the potential risks that they would need to be wary of under the device. Many of the written resources currently being distributed to VAD patient families include terminology and concepts that are difficult to understand by the layperson. Therefore, it is vital to create resources and tutorial references that are at a literacy level that is applicable to a wide variety of socioeconomic and educational backgrounds.

In addition, most of the current materials do not provide enough of a general background regarding the mechanical functions and infection risks of the VADs, making the resources less applicable to the general population of patient families. Last but not least, the non web-based materials that are most often being utilized right now are inexpensive but are difficult to update with new information. Over time, the relevancy of the written materials decreases and reaches a point where the information being handed out to the patients is no longer applicable and provides no relevant background information about the device. Thus, when devising a solution for the key stakeholders, much attention should be given to curbing several or possibly even eliminating many of the issues surrounding current approaches to create a more holistic and patient-focused solution.

Work Done and Proposed Solution 

To learn more about the current training processes, we conducted literature reviews, prepared surveys for the caregivers and the VAD coordinator, and shadowed our problem owners on-site. The surveys provided us with a better understanding of gaps and uncertainties in the current training process. From the survey data, we arrived at three major goals to ensure comprehensive training, retention of information, and confidence in VAD management: 

1. Standardized curriculum for pediatric VAD management

2. Practice of the training learned before the patient is discharged

3. Tangible and sustainable training material that can be referenced once the patient is discharged

With these goals in mind, we brainstormed additional considerations to include into the prototype (Figure 1). Some of these considerations include multi-lingual training as not all patients and caregivers will be fluent in English, internet accessibility, and current resources available to the patients. Not wanting to create additional problems and overburden any stakeholders, we brainstormed problems they already dealt with (Figure 2).

While analyzing the survey results, the idea of tangible long-term resources was requested by multiple caregivers, with examples such as videos, pictures, and quizzes. We performed multiple storyboarding activities to map out the best sequence for information presentation (Figure 3). 

After determination of our stakeholders, design considerations, and environmental considerations, we moved forward with our project to develop a prototype of a possible training supplement for the problem. We concluded that the training administered by the VAD coordinator at Texas Children’s Hospital is sufficient, but supplemental materials are needed to encourage the caregivers to be confident in their skills. 

We conducted online research and discussed with our problem owners the most important concepts of VAD training so that those sections would be emphasized in our solution. The most important areas of training were determined to be device and alarm management, infection recognition, additional complications, right ventricular (RV) failure recognition, and central nervous system (CNS) event recognition. Then we realized that a mobile application would be the best and most feasible solution to our problem and created an initial high-level flow diagram of the desired features (Figure 4).

An initial prototype of the mobile application was created on Google Forms, utilizing its functions to click through sets of information and questions and to input and collect data. The initial prototype focused on content and usability. Following user-centered design principles, the interface allows for the patient or caregiver to feel in control of their training with easy to locate and understand back and forth buttons, selection menus, and the ability to revert a decision.   

A screen of a menu from the prototype is shown (Figure 5). For intellectual property reasons, the full prototype cannot be shown. 

VADventure is the best approach to the caregiver training problem because it supplements the current in-person training provided by the VAD coordinator. The results from the survey, along with conversations with caregivers, indicated a need for a resource that can be referenced outside of the hospital in an accessible manner.

VADventure would not only provide written and visual learning materials for caregivers and patients, but it also introduces a fun adventure component that draws users back in with positive reinforcement. After users have completed quizzes in multiple sections, they will take a final quiz that gauges their understanding of the material. The positive reinforcement along with the quick accessibility boosts caregiver confidence in caring for VAD patients. The VADventure app also will allow teachers and family members to log on, and the information for each specific user is tailored to what they would need to know regarding the VAD and patient. 

Outcome and Future Work

After pitching the functional prototype of our mobile application to Texas Children's Hospital, they expressed interest in pursuing further development. We are currently working alongside medical practitioners to elaborate our content concerning infection recognition, right ventricular failure recognition, central nervous system event recognition, pancreatitis and hemolysis recognition, and alarm management to ensure that information is presented throughly and in way that is understandable for those with low health literacy. After content completion, the mobile application for outpatient pediatric VAD training will be handed off to Texas Children's Hospital for initial clinical testing to gain feedback from doctors, caregivers, and patients. 

Future work will be in obtaining a provisional patent for the structure and concepts behind the training, in developing training videos, interactive animations, and other audiovisual helpers, and in application development to eventually bring it to the app market. 

The VADventure is simply a skeleton for many future training opportunities through the app medium. Educating caregivers regarding any medical device or surgical procedure is effective when the information is presented in both written and visual means. The opportunity to quiz oneself is also a great reinforcer and can help identify areas of uncertainty. Currently there is a market for app based learning in the disease management and wellness digital health space. As the world becomes more digital, it makes sense for any sort of patient/caregiver training to shift to the online and app space as well. In a phone interview, Kathy Harris, the VP of corporate development at Sharecare, identified future opportunities for large scale implementation for an app like VADventure.