A Collaborative Learning Assessment of Developmental Care Practices for Infants in the Cardiac Intensive Care Unit.

OBJECTIVE: Assess differences in approaches to and provision of developmental care for infants undergoing surgery for congenital heart disease. STUDY DESIGN: A collaborative learning approach was used to stratify, assess, and compare individualized developmental care practices among multidisciplinary teams at 6 pediatric heart centers. Round robin site visits were completed with structured site visit goals and postvisit reporting. Practices of the hosting site were assessed by the visiting team and reviewed along with center self-assessments across specific domains including pain management, environment, cue-based care, and family based care coordination. RESULTS: Developmental care for infants in the cardiac intensive care unit (CICU) varies at both a center and individual level. Differences in care are primarily driven by variations in infrastructure and resources, composition of multidisciplinary teams, education of team members, and use of developmental care champions. Management of pain follows a protocol in most cardiac intensive care units, but the environment varies across centers, and the provision of cue-based infant care and family-based care coordination varies widely both within and across centers. The project led to proposed changes in clinical care and center infrastructure at each participating site. CONCLUSIONS: A collaborative learning design fostered rapid dissemination, comparison, and sharing of strategies to approach a complex multidisciplinary care paradigm. Our assessment of experiences revealed marked variability across and within centers. The collaborative findings were a first step toward strategies to quantify and measure developmental care practices in the cardiac intensive care unit to assess the association of complex inpatient practices with long-term neurodevelopmental outcomes.

Parent Perspectives on Family-Based Psychosocial Interventions for Congenital Heart Disease.

OBJECTIVES: To identify parents' preferences for goals and structure of intervention programs to support the psychosocial needs of families impacted by congenital heart disease (CHD). STUDY DESIGN: Information about parent priorities for psychosocial programs was obtained in this mixed-methods study conducted at a pediatric hospital in the Mid-Atlantic region of the US. Participants were parents (N = 34; 20 mothers, 14 fathers) of children with CHD between the ages of 1 and 3 years who had cardiac surgery at less than 6 months of age. Qualitative data were excerpts from semistructured interviews. Quantitative data were participant choices regarding their ideal psychosocial program resulting from a card sort. RESULTS: Parents reported that psychosocial interventions should support partnership in their child's care, promote self-care, facilitate communication with providers, prepare parents for challenges after hospitalization, provide education about child neurodevelopment, and help parents engage social support. Parents reported needing formalized support across care, brief intervention models, in-person individualized or small group support, and involvement of multidisciplinary providers and peer mentors in the delivery of interventions. CONCLUSIONS: Parents of children with CHD need psychosocial interventions that empower them to act as primary caregivers and effective advocates for their child. Individualized, formalized, and multidisciplinary approaches to psychosocial care are necessary to best accommodate the dynamic stressors related to parenting a child with CHD and may mitigate the impact of parent mental health problems on child outcomes.

The effect of preoperative nutritional status on postoperative outcomes in children undergoing surgery for congenital heart defects in San Francisco (UCSF) and Guatemala City (UNICAR).

OBJECTIVE: The objective of this study was to determine the association between preoperative nutritional status and postoperative outcomes in children undergoing surgery for congenital heart defects (CHD). METHODS: Seventy-one patients with CHD were enrolled in a prospective, 2-center cohort study. We adjusted for baseline risk differences using a standardized risk adjustment score for surgery for CHD. We assigned a World Health Organization z score for each subject's preoperative triceps skin-fold measurement, an assessment of total body fat mass. We obtained preoperative plasma concentrations of markers of nutritional status (prealbumin, albumin) and myocardial stress (B-type natriuretic peptide [BNP]). Associations between indices of preoperative nutritional status and clinical outcomes were sought. RESULTS: Subjects had a median (interquartile range [IQR]) age of 10.2 (33) months. In the University of California at San Francisco (UCSF) cohort, duration of mechanical ventilation (median, 19 hours; IQR, 29 hours), length of intensive care unit stay (median, 5 days; IQR 5 days), duration of any continuous inotropic infusion (median, 66 hours; IQR 72 hours), and preoperative BNP levels (median, 30 pg/mL; IQR, 75 pg/mL) were associated with a lower preoperative triceps skin-fold z score (P < .05). Longer duration of any continuous inotropic infusion and higher preoperative BNP levels were also associated with lower preoperative prealbumin (12.1 ± 0.5 mg/dL) and albumin (3.2 ± 0.1; P < .05) levels. CONCLUSIONS: Lower total body fat mass and acute and chronic malnourishment are associated with worse clinical outcomes in children undergoing surgery for CHD at UCSF, a resource-abundant institution. There is an inverse correlation between total body fat mass and BNP levels. Duration of inotropic support and BNP increase concomitantly as measures of nutritional status decrease, supporting the hypothesis that malnourishment is associated with decreased myocardial function.