Psychosocial, neurodevelopmental, and transition of care practices provided to children with CHD across North American cardiac clinics.

Children with CHD are at risk for psychosocial and neurodevelopmental difficulties, as well as lapses in care during their transition from paediatric to adult CHD providers. The American Heart Association and American Academy of Pediatrics released guidelines for best practices in the neurodevelopmental and transitional care for children with CHD in 2012 and 2011, respectively. CHD providers from 48 (42.1% response rate) geographically diverse cardiac clinics completed a 31-item electronic survey designed to assess the cardiac teams' consistency with neurodevelopmental evaluation and management recommendations, consultation/liaison patterns for psychosocial services, and procedures regarding transitional services for emerging adults. Responses suggest most cardiac teams refer patients to psychosocial services as needed, and 39.6% of teams screen for psychosocial distress. CHD providers at 66.7% of cardiac clinics reported a formal neurodevelopmental programme/clinic. Nearly half of cardiac teams conduct routine neurodevelopmental evaluations, most frequently occurring at 9 months of age. Less than 10% of cardiac clinics have resources to meet the American Heart Association and American Academy of Pediatrics 2012 neurodevelopmental evaluation and management guidelines. Formal paediatric to adult CHD transition programmes were reported at 70.8% of cardiac clinics and were associated with younger ages of transition to adult CHD care. Care practices varied across the 48 represented cardiac clinics, indicating inconsistent practices for patients with CHD. Barriers and facilitators to the provision of care for children in these areas were reported and are presented. More support is needed for cardiac clinics to continue improvements in psychosocial, neurodevelopmental, and transitional care services.

Navigating School Reentry in Lung Transplant Recipients With Cystic Fibrosis.

In addition to medical and psychological support, social support plays a key role in the success of lung transplant recipients, especially in children. An important component of that social support for pediatric lung transplant recipients is school reentry. These children face daily challenges, which often have to be addressed by the transplant team with little existing guidance in the medical literature. In this article, we discuss relevant practice issues for pediatric lung transplant recipients with cystic fibrosis including heightened concern for infection risk, bullying, school performance, and body image concerns. In addition to discussing these important issues, we provide recommendations based on our experiences.

Lung Transplant Index: A Quality Improvement Initiative.

Limited long-term survival is a recognized problem in adolescent/young adult lung transplant recipients. A quality improvement (QI) initiative included the development of a Lung Transplant Index (LTI) composed of key elements that we used as a comprehensive approach to screen and identify potential harms in this at-risk patient population. METHODS: A single-center, uncontrolled QI study was completed from January 2014 to February 2019. The elements of the LTI are events that should have occurred within the most recent 12 months. If an element did not occur, it was counted as a missed element of preventing harm and summated later serving as the LTI score. Implementation of the LTI occurred on January 1, 2015, with a retrospective chart review of patients seen in clinic the prior year serving as baseline measures for comparison. RESULTS: The year before implementing the LTI, numerous opportunities failed to identify preventable harm in our adolescent/young adult lung transplant population. The LTI resulted in a sustained reduction of these missed opportunities without negatively influencing patient/family satisfaction with lengthening of the clinic visit. CONCLUSIONS: A single-center QI initiative identified preventable harms in an adolescent/young adult lung transplant population and reduced the number of preventable harm elements not performed. Future work is needed to determine if this type of QI initiative is associated with less healthcare utilization.

Understanding Treatment Adherence With the Health Belief Model in Children With Cystic Fibrosis.

OBJECTIVE: Children's health beliefs are significantly related to their adherence; however, pediatric literature has rarely tested health-related theories as a whole. The goal of the present study was to evaluate the use of the health belief model (HBM) in understanding children's adherence, both globally and to individual treatment components. METHOD: Thirty-three patient-parent dyads completed questionnaires regarding health beliefs and adherence to medical regimens. RESULTS: Multiple linear regressions found a significant relationship among the HBM variables and reports of global adherence for children and parents. For children, the HBM variables were significantly related to adherence to aerosol medications, aerosol antibiotics, metered dose inhalers, and vitamins. For parents, the HBM variables were significantly related to children's adherence to airway clearance, oral antibiotics, and vitamins. Paired sample t tests found children and parents had significantly discrepant heath beliefs. CONCLUSION: These findings provide further support for the HBM in evaluating pediatric adherence, with evidence that barriers and cues to action may be targets for early intervention. Future research using this model to identify a comprehensive way to assess, understand, and elicit change in the adherence to medical regimens for youth with chronic illness would be beneficial.

Perception of primary care pediatricians of effectiveness, acceptability, and availability of mental health services.

Approximately 20% of children in the United States meet the criteria for a psychosocial disorder; however, less than 25% of these children receive psychosocial services. A questionnaire assessed primary care pediatricians' (PCPs) perceptions of effectiveness, availability, and burden of treatment options for children's psychosocial difficulties and parents' acceptance and adherence with these treatments. Repeated measures analysis of variance found that PCPs are more likely to refer children with psychosocial problems to a mental health professional than to prescribe medication. PCPs prescribe medications more than counseling parents themselves or watchful waiting. PCPs reported children's behavior is more likely to improve with mental health services than with medication, though medication is the most available treatment. PCPs believe parent training programs are very effective for treating children's behavior problems, but believe parents are more accepting and compliant with other treatments. Findings indicate PCPs' perceptions of availability and acceptability of treatment options drive their treatment recommendations of psychosocial problems.