Accessible Healthcare Model for Congenital Heart Disease

This trial aims to assist individuals with congenital heart disease (CHD) in transitioning smoothly from pediatric to adult healthcare. It evaluates educational programs led by nurses and doctors to determine which is more effective in helping patients find new doctors as they age. The trial seeks CHD patients aged 12-26 who can communicate in English or Spanish and may have a disability. Participants will contribute to improving resources for others undergoing this important healthcare transition. As an unphased trial, this study provides participants the chance to contribute to valuable research that enhances healthcare transitions for future patients.

The trial information does not specify whether you need to stop taking your current medications. It's best to discuss this with the trial coordinators or your doctor.

Research has shown that both Nurse-Led and Physician-Led Healthcare Transition Education are generally safe for patients with congenital heart disease (CHD) transitioning from pediatric to adult care.

For Nurse-Led Healthcare Transition Education, studies have found that these programs improve knowledge and self-management skills in adolescents and young adults with CHD. They report no significant negative effects, indicating that this approach is well-tolerated. Specifically, a clinical trial of a nurse-led education program found it safe and helpful in improving transition outcomes.

Similarly, Physician-Led Healthcare Transition Education plays a crucial role in ensuring a smooth shift to adult care. It emphasizes education and planning, which are essential for preparing patients. Existing studies show no evidence of harm or negative side effects from this method.

Researchers are excited about the Accessible Healthcare Model for Congenital Heart Disease because it introduces innovative approaches to healthcare transition education for young patients with congenital heart disease (CHD). Unlike traditional care, which often lacks a structured transition plan, this model features both nurse-led and physician-led education to better prepare patients for the transition from pediatric to adult care. By focusing on education tailored to the patient's developmental stage and involving patient support people and healthcare providers, this approach aims to improve long-term health outcomes and patient self-management, something standard treatments don't typically address.

This trial will compare two approaches to healthcare transition education for young people with congenital heart disease (CHD): nurse-led and physician-led programs. Research has shown that nurse-led programs can significantly assist young people with CHD in transitioning from child to adult care. These programs enhance patients' understanding of their condition and improve self-management, reducing the risk of delays in accessing adult CHD care. In contrast, doctors offer personalized advice to prepare patients for the transition from pediatric to adult care. These educational sessions have been linked to better health outcomes and fewer health issues. Both nurse-led and doctor-led approaches in this trial aim to make the transition smoother and more effective for patients with CHD.¹³⁴⁶⁷