Pediatric to Adult Health Care Transition Preparation, Support, and Education Unmet Needs of Families Living With a Kawasaki Disease Diagnosis

<h2>Abstract</h2><h3>Background</h3> Pediatric transition programs aim to maximize autonomy, self-care, and lifelong functioning. Feedback from patients with Kawasaki Disease (KD) is valuable for developing a successful transitional program. This survey aimed to build on previous research and explore gaps in support, education, research, timing, and methods for sharing information. <h3>Methods</h3> The Supportive Care Framework, an approach for planning and service delivery, guided the development of a 22-item survey (with areas for free-text responses) regarding KD knowledge, gaps, and transition. The sampling frame included online KD websites for voluntary completion by KD patients and parents. Analysis was descriptive. <h3>Results</h3> During the 4-month study period in 2024, a total of 438 surveys from KD patients and parents were analyzed. Key areas of concern included health-related issues, long-term consequences, and psychosocial effects. Prominent interests were learning about physical activity, heart-healthy eating, and navigating adult health care. Most preferred methods of learning included webinars, health passports, or KD family education events. Timing for learning varied from at diagnosis, weekly, monthly, yearly, or before transitioning. <h3>Conclusions</h3> The findings provide opportunities for enhancing a seamless KD transition program. The use of online methods was prominent for support and learning. Future directions include establishing a transition roadmap for the KD population, which can also serve as a template in transition planning for other chronic disease populations.