Developmental care pathway for hospitalised infants with CHD: on behalf of the Cardiac Newborn Neuroprotective Network, a Special Interest Group of the Cardiac Neurodevelopmental Outcome Collaborative.

Infants and children born with CHD are at significant risk for neurodevelopmental delays and abnormalities. Individualised developmental care is widely recognised as best practice to support early neurodevelopment for medically fragile infants born premature or requiring surgical intervention after birth. However, wide variability in clinical practice is consistently demonstrated in units caring for infants with CHD. The Cardiac Newborn Neuroprotective Network, a Special Interest Group of the Cardiac Neurodevelopmental Outcome Collaborative, formed a working group of experts to create an evidence-based developmental care pathway to guide clinical practice in hospital settings caring for infants with CHD. The clinical pathway, "Developmental Care Pathway for Hospitalized Infants with Congenital Heart Disease," includes recommendations for standardised developmental assessment, parent mental health screening, and the implementation of a daily developmental care bundle, which incorporates individualised assessments and interventions tailored to meet the needs of this unique infant population and their families. Hospitals caring for infants with CHD are encouraged to adopt this developmental care pathway and track metrics and outcomes using a quality improvement framework.

Electronic Mental Health Screening in a Pediatric Heart Failure and Transplant Clinic.

Adults with heart failure and transplant are at increased risk for psychiatric comorbidities. The prevalence and impact of psychiatric comorbidities have not been well studied in pediatric heart failure and transplant. This quality improvement project sought to evaluate the feasibility of utilizing electronic mental health screening measures during pediatric heart failure and transplant clinics and to explore the prevalence and severity of self-reported depressive, anxiety, and suicidal ideation symptoms. Patients aged 11 years and older who presented to a pediatric heart failure and transplant clinic were administered the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7). Medical chart review and a survey were used to examine additional variables of interest. There were no significant differences in moderate and severe mental health symptoms between gender, medical diagnoses, or those with recent hospitalizations. Pediatric patients with heart failure or transplant reported higher prevalence of anxiety and depressive symptoms, and similar suicidal ideation compared to the general adolescent population. Moreover, rates of depression and anxiety symptoms as well as suicidal ideation were comparable to pediatric patients with diabetes, lupus, inflammatory bowel disease, and cystic fibrosis. Results suggest electronic mental health screening is feasible for use during outpatient cardiology clinic visits and provides valuable mental health information.

Preparing for transition: The effects of a structured transition program on adolescent heart transplant patients' adherence and transplant knowledge.

Transition to adult health care has become a mainstream focus in pediatric health care as a higher percentage of patients are surviving into adulthood. This study investigated the success of a structured educational transition program in improving pediatric heart transplant patients' overall medical knowledge, medication adherence, readiness to transition, as well as parental perceptions of their child's readiness to transition to aid in the successful transition to an adult heart transplant program. Patients underwent a structured transition program over 2 years that included a total of seven 2-hour educational sessions hosted quarterly. This study comprised of a retrospective review of 12 heart transplant patients between the ages of 16-22 years. Test results indicated a statistically significant increase in overall medical knowledge scores from presession assessment compared to post-session assessment. Participants remained confident in their ability to transition throughout the program. Further, a statistically significant decrease in participant non-adherence was observed, as percentage of calcineurin inhibitor levels determined to be out of range decreased over the course of the program. Results suggest that a structured transition program is effective in improving overall patient medical knowledge in relation to their heart transplant and enhancing patient medication adherence. To effectively facilitate transition, pediatric providers, caregivers, and patients must communicate to provide a purposeful planned transition experience from pediatric to adult health care.