Identifying Priorities to Improve the System of Care for Children With Complex Health Needs in North Carolina: Process and Outcomes of Systematic Stakeholder Engagement

ObjectiveChildren with complex health needs (CCHN) have both medical (eg, chronic conditions) and health-related social needs (eg, potentially adverse social determinants of health) that require ongoing health care and support from multiple community service providers. National standards developed for populations defined by health needs (CYSHCN) provide a framework for stakeholders to plan system-level improvements in care delivery for CCHN, but improvement efforts should reflect the priorities of their families and providers. This article describes a process of prioritizing system-level efforts to improve the health and well-being of CCHN and families in North Carolina (NC), using systematic stakeholder engagement and modified Delphi expert ratings.MethodsWe surveyed stakeholders with experience caring for CCHN using an open-ended, 3-item instrument to identify opportunities to improve systems of care. Using directed qualitative content analysis, we synthesized responses into a master list of potential improvement topics. Using a modified Delphi approach, a 16-member advisory committee rated all topics for importance and urgency, on 9-point Likert scales over 2 rounds; then ratings for each topic were ranked (low, medium, high) to establish relative priority.ResultsForty seven individuals from 31 counties around NC provided survey responses, yielding 59 improvement topics in 10 domains. Through the modified Delphi method process, 21 topics (36%) received the highest rankings, largely representing access to community- and home-based services, equity, and enhancement of the pediatric workforce.ConclusionsPriorities identified by stakeholders will inform advocacy, policy, and improvement efforts. Next steps for the coalition include developing improvement projects to implement stakeholder-recommended actions for the highest-priority topics.     

Descriptive Analysis and Profile of Health Care Transition Services Provided to Adolescents and Emerging Adults in the Movin' On Up Health Care Transition Program

Global efforts are underway to develop, implement and test health care transition (HCT) models of care. Most studies have focused on the transfer of care models. In contrast, the nurse-led interdisciplinary HCT model, Movin' On Up, provides comprehensive HCT services beginning in early adolescence. A retrospective analysis was conducted of data extracted from HCT records of 146 adolescents and emerging adults with spina bifida (with a mean age of 13.91 years) who were provided services in the Movin' On Up HCT program. Data were categorized based on the Health Care Transition Research Consortium HCT model and the Omaha System framework and as to type of direct HCT services provided by the HCT Specialist and nurse-led interdisciplinary team conferences conducted. Findings revealed that the scope of services provided represented the scope of comprehensive needs beyond those associated with the transfer of care.     

Use of Pediatric Health Information System database to study the trends in the incidence,management, etiology,and outcomes due to pediatric acute liver failure in the United States from 2008 to 2013

Data were collected of children admitted with ALF to 16 US pediatric liver transplant centers from 2008 to 2013 using the PHIS for a retrospective analysis of PALF trends. Patient data linked to the principal diagnosis code for acute necrosis of the liver (570.00) were analyzed for the following: demographics, regional differences, changes over time, pharmaceutical trends, procedural trends, associated diagnoses, and patient outcomes. In 52.5% of 583 patients who met the selection criteria for PALF, the etiology remained undetermined. Acetaminophen toxicity (18.7%) was the most common identifiable etiology, and hepatic encephalopathy (38.6%) was the most common complication. Mortality was lower than previously reported; 95.4% survived and 73.2% survived without a liver transplant. Acute respiratory failure (OR = 3.4, p = 0.035), acute kidney injury (OR = 3.6, p = 0.003), and cerebral edema (OR = 3.6, p = 0.02) were independently associated with increased risk of mortality. The use of N‐acetylcysteine in non‐acetaminophen‐related ALF, the use of intracranial pressure monitoring, and the proportion of sepsis decreased significantly during the study period. The PHIS database can be a useful tool to study the future trends of PALF patients.