Barriers to and facilitators of a just-in-time adaptive intervention for respiratory illness in cerebral palsy: a qualitative study.

Objective: To understand caregiver, healthcare professional and national expert perspectives on implementation of a just-in-time adaptive intervention, RE-PACT (Respiratory Exacerbation-Plans for Action and Care Transitions) to prevent respiratory crises in severe cerebral palsy.

Design: Qualitative research study.

Setting: Paediatric complex care programmes at two academic medical institutions.

Caregiving and Confidence to Avoid Hospitalization for Children with Medical Complexity.

Objective: To test associations between parent-reported confidence to avoid hospitalization and caregiving strain, activation, and health-related quality of life (HRQOL).

Study Design: In this prospective cohort study, enrolled parents of children with medical complexity (n = 75) from 3 complex care programs received text messages (at random times every 2 weeks for 3 months) asking them to rate their confidence to avoid hospitalization in the next month. Low confidence, as measured on a 10-point Likert scale (1 = not confident; 10 = fully confident), was defined as a mean rating <5.

Linking Parent Confidence and Hospitalization through Mobile Health: A Multisite Pilot Study.

Objective: To evaluate the associations between parent confidence in avoiding hospitalization and subsequent hospitalization in children with medical complexity (CMC); and feasibility/acceptability of a texting platform, Assessing Confidence at Times of Increased Vulnerability (ACTIV), to collect repeated measures of parent confidence.

Study Design: This prospective cohort study purposively sampled parent-child dyads (n = 75) in 1 of 3 complex care programs for demographic diversity to pilot test ACTIV for 3 months. At random days/times every 2 weeks, parents received text messages asking them to rate confidence in their child avoiding hospitalization in the next month, from 1 (not confident) to 10 (fully confident).

Key Population Health Outcomes for Children with Medical Complexity: A Systematic Review.

Introduction: Despite the significant healthcare policy and program implications, a summary measure of health for children with medical complexity (CMC) has not been identified. It is unclear whether existing population health approaches apply to CMC. We conducted a systematic review of the existing peer-reviewed research literature on CMC to describe the health outcomes currently measured for CMC.

A Healthy Life for a Child With Medical Complexity: 10 Domains for Conceptualizing Health.

Background And Objectives: Defining and measuring health for children with medical complexity (CMC) is poorly understood. We engaged a diverse national sample of stakeholder experts to generate and then synthesize a comprehensive list of health outcomes for CMC.

Methods: With national snowball sampling of CMC caregiver, advocate, provider, researcher, and policy or health systems experts, we identified 182 invitees for group concept mapping (GCM), a rigorous mixed-methods approach.

Complex Care Hospital Use and Postdischarge Coaching: A Randomized Controlled Trial.

Objectives: We sought to examine the effect of a caregiver coaching intervention, Plans for Action and Care Transitions (PACT), on hospital use among children with medical complexity (CMC) within a complex care medical home at an urban tertiary medical center.

Methods: PACT was an 18-month caregiver coaching intervention designed to influence key drivers of hospitalizations: (1) recognizing critical symptoms and conducting crisis plans and (2) supporting comprehensive hospital transitions. Usual care was within a complex care medical home.

The Medical Home at 50: Are Children With Medical Complexity the Key to Proving Its Value?

The medical home has been widely promoted as a model of primary care with the potential to transform the health care delivery system. Although this model was initially focused on children with chronic conditions, the American Academy of Pediatrics has endorsed a generalization of the model, promoting the statement, "Every child deserves a medical home." Recently, other major professional and governmental organizations have embraced this more inclusive vision, and the medical home concept has been promoted in provisions of the Affordable Care Act.

Experts' Perspectives Toward a Population Health Approach for Children With Medical Complexity.

Objective: Because children with medical complexity (CMC) display very different health trajectories, needs, and resource utilization than other children, it is unclear how well traditional conceptions of population health apply to CMC. We sought to identify key health outcome domains for CMC as a step toward determining core health metrics for this distinct population of children.

Methods: We conducted and analyzed interviews with 23 diverse national experts on CMC to better understand population health for CMC.

Discharge Handoff Communication and Pediatric Readmissions.

Background: Improvement in hospital transitional care has become a major national priority, although the impact on children's postdischarge outcomes is unclear.

Objective: To characterize common handoff practices between hospital and primary care providers (PCPs), and test the hypothesis that common handoff practices would be associated with fewer unplanned readmissions.

Design, Setting, And Patients: This prospective cohort study enrolled randomly selected pediatric patients during an acute hospitalization at a tertiary children's hospital in 2012-2014.

Strategies to Reduce Hospitalizations of Children With Medical Complexity Through Complex Care: Expert Perspectives.

Objective: Interventions to reduce disproportionate hospital use among children with medical complexity (CMC) are needed. We conducted a rigorous, structured process to develop intervention strategies aiming to reduce hospitalizations within a complex care program population.

Methods: A complex care medical home program used 1) semistructured interviews of caregivers of CMC experiencing acute, unscheduled hospitalizations and 2) literature review on preventing hospitalizations among CMC to develop key drivers for lowering hospital utilization and link them with intervention strategies.

How Avoidable are Hospitalizations for Children With Medical Complexity? Understanding Parent Perspectives.

Objective: Children with medical complexity (CMC) are a small group that utilizes large amounts of health care resources. Although parents are the primary healthcare decision-makers for their children, little is known from their perspective about why CMC are hospitalized. We sought to understand what parents think about factors leading to hospitalization and whether any recent hospitalizations might have been avoidable.

Medical Complexity among Children with Special Health Care Needs: A Two-Dimensional View.

Objective: To identify subgroups of U.S. children with special health care needs (CSHCN) and characterize key outcomes.

The Medical Home and Hospital Readmissions.

Background And Objective: Despite considerable attention, little is known about the degree to which primary care medical homes influence early postdischarge utilization. We sought to test the hypothesis that patients with medical homes are less likely to have early postdischarge hospital or emergency department (ED) encounters.

Methods: This prospective cohort study enrolled randomly selected patients during an acute hospitalization at a children's hospital during 2012 to 2014.

Use of a learning network to improve variation in interstage weight gain after the Norwood operation.

Background: Growth failure is common in infants with single ventricle. This study evaluated the use of a learning network, the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC), to spread optimized nutritional practices and improve infant growth.

Methods: A previously identified Nutritional Bundle was spread among NPC-QIC sites.

Impact of prenatal diagnosis in survivors of initial palliation of single ventricle heart disease: analysis of the National Pediatric Cardiology Quality Improvement Collaborative database.

Among infants with single ventricle congenital heart disease (SVD) requiring Stage I palliation (S1P), the impact of prenatal diagnosis (PD) on outcomes has been variably characterized. We investigated the impact of PD in a large multi-center cohort of survivors of S1P in the National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC) registry. Retrospective analysis of demographic and outcomes data among infants enrolled in the NPCQIC database; eligibility includes SVD requiring S1P and survival to discharge.

Predictors of 30-day readmission and association with primary care follow-up plans.

Objective: To test the hypothesis that missing primary care follow-up plans in the discharge summary is associated with higher 30-day readmissions.

Study Design: This retrospective cohort study included pediatric patients discharged from Mattel Children's Hospital, University of California, Los Angeles between July 2008 and July 2010. Exclusions included deaths, transfers, neonatal discharges, stays under 24 hours, and patients over 18 years of age.

Improving year-end transfers of care in academic ambulatory clinics: a survey of pediatric resident physician perceptions.

Background: In resident primary care continuity clinics, at the end of each academic year, continuity of care is disrupted when patients cared for by the graduating class are redistributed to other residents. Yet, despite the recent focus on the transfers of care between resident physicians in inpatient settings, there has been minimal attention given to patient care transfers in academic ambulatory clinics. We sought to elicit the views of pediatric residents regarding year-end patient handoffs in a pediatric resident continuity clinic.

Effects of a medical home program for children with special health care needs on parental perceptions of care in an ethnically diverse patient population.

The Pediatric Medical Home Program at UCLA enrolled 41 patients in a primary care model focused on providing intensive care coordination for medically complex, ethnically diverse children with special health care needs (CSHCN) in our Pediatric Resident Continuity clinic. We sought to determine the effect of our program on parental satisfaction, and to compare differences in parental satisfaction between English and Spanish speaking patients. The Medical Home Family Index, developed by the Center for Medical Home Improvement, was administered to a total of 22 participating parents, in the family's primary language by a native speaker, at various times after enrollment in the program.

Medical transport of children with complex chronic conditions.

One of the most notable trends in child health has been the increase in the number of children with special health care needs, including those with complex chronic conditions. Care of these children accounts for a growing fraction of health care resources. We examine recent developments in health care, especially with regard to medical transport and prehospital care, that have emerged to adapt to this remarkable demographic trend.

Variation in preoperative and intraoperative care for first-stage palliation of single-ventricle heart disease: a report from the Joint Council on Congenital Heart Disease National Quality Improvement Collaborative.

Background And Methods: As the first multicenter quality improvement collaborative in pediatric cardiology, the Joint Council on Congenital Heart Disease National Pediatric Cardiology Quality Improvement Collaborative registry collects information on the clinical care and outcomes of infants discharged home after first-stage palliation of single-ventricle heart disease, the Norwood operation, and variants. We sought to describe the preoperative and intraoperative characteristics of the first 100 patients enrolled in the National Pediatric Cardiology Quality Improvement Collaborative registry.

Results: From 21 contributing centers, 59% of infants were male, with median birth weight of 3.

Variation in interstage outpatient care after the Norwood procedure: a report from the Joint Council on Congenital Heart Disease National Quality Improvement Collaborative.

Objective: The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) is the first quality improvement collaborative in pediatric cardiology, and its registry captures information on interstage care and outcomes of infants after the Norwood procedure. The purpose of this study was to evaluate variation in interstage outpatient clinical care practices for infants discharged home after the Norwood procedure.

Design: Data for the first 100 infants enrolled in the NPC-QIC registry were evaluated.