Heartpedia

Background: Effective counseling and good communication are vital to adequately educate families on congenital heart disease (CHD) anatomy, prognosis, and surgical options. In addition, families desire to have easy access to reliable sources of information to further educate themselves and their social networks. Advanced digital and 3D printing technology has enabled the creation of CHD-specific visual aids aimed at improving patient-physician communication and enhancing the patient-family experience. Objective: To determine ambulatory CHD patient family/caregiver response to new tech-based counseling utilizing 3D printed hearts and a novel interactive mobile application. Methods: This is a single center prospective study of caregivers of previously diagnosed ambulatory CHD patients. Consenting participants were provided lesion specific education using 3D printed models (Figure 1) and an internally-developed interactive mobile app known as Heartpedia (Figure 2). At the end of the encounter, the caregiver completed a survey on their overall assessment of the novel educational tools and their perception of knowledge regarding the specific CHD described. Questions on the survey included recalling details related to the patient specific CHD condition. Additionally, the caregiver';s satisfaction and experience with the new educational tools compared to prior encounters was assessed, and the educational tool preference (3D model vs. app) was recorded. Simple T-test was used to assess for significant differences with the current encounter, compared to prior encounters. Results: Of the total 75 participants, 96% of caregivers reported that the 3D model and mobile application was "very useful" or "extremely useful" in helping them understand their child';s CHD. The caregiver satisfaction was reported as "significantly improved" (p<0.01), and their perceived understanding of their child';s CHD was also "significantly improved" (p<0.01). The caregivers also report "significantly improved" confidence when describing their child';s CHD to their social network and their healthcare provider (p<0.01). The caregivers also perceived "improved effort" by the physician with regard to including their perspectives when explaining their child';s CHD (p<0.01). The mobile app was preferred to the 3D printed heart models in this cohort. Conclusions: Novel educational tools, such as 3D printed models and an interactive mobile ap, introduced into ambulatory follow up visits for CHD patients greatly enhance the caregivers'; perceived understanding and confidence regarding the details of their child';s CHD. Future studies to assess if these tools can improve teen and young adult CHD transitioning to adult providers, as well as, quality of life outcomes tied to anxiety and perceived knowledge are next to be evaluated.

Complex unrepaired congenital heart disease requires extensive planning to determine the optimal procedural approach. Conventional noninvasive diagnostic imaging initially provides only two-dimensional (2D) representations of the complex, three-dimensional cardiovascular anatomy. With the expansion of 3D visualization techniques in imaging, a paradigm shift has occurred in complex congenital heart disease surgical planning using digital and 3D printed heart models. There has been early success in demonstrating the benefit of these models in interdisciplinary communication and education. The future goal of this work is to demonstrate a clinical outcome benefit using digital and 3D printed models to plan both surgical and catheterization-based interventional procedures. Ultimately, the hope is that advanced procedural planning with virtual surgery and 3D printing will enhance decision-making in complex congenital heart disease cases resulting in improved perioperative performance by reducing operative times, complications, and reoperations.