31 Strengthening care for infants with medical complexity during the transition from the neonatal intensive care unit to the community

BACKGROUND: With advances in technology and innovative medical treatments, infants who previously would have died in early infancy are living longer. These infants have significant needs in the medical system and pose challenges in coordinating care from multiple providers, especially after discharge from NICU. OBJECTIVES: To engage neonatal-to-early-childhood care-transition stakeholders in implementing system-level change to champion the successful transition of infants with medical complexity into early childhood. We believe this engagement activity will spark action amongst stakeholders to adopt best practices leading to improvements in care for this vulnerable patient population. DESIGN/METHODS: We explored four key care transition related questions: 1. What are the post NICU discharge care coordination needs of families? 2. What are the existing evidence-based neonatal to early childhood transition models? How effective are they in improving health outcomes and patient/family experience? 3. What interventions are effective in reducing ED visits and hospitalizations among neonates with complex medical needs? 4. In restructuring/reorganizing the existing transition process, what referral, training or other supports are needed to ensure successful transition from the perspectives of: (i) patient/family, (ii) care provider, (iii) hospital. We organized journey mapping and focus groups with NICU alumni families whose children have medical complexity. We conducted a literature review to identify evidence-based interventions. We compiled this information to create evidence briefs that were presented to an interprofessional group of senior stakeholders using the deliberative dialogue approach. Following presentation of the evidence briefs surveys were administered to measure stakeholder intention to act on solutions presented. RESULTS: Twenty-five opportunities for improving transitions between hospital and community care teams were identified through engagement with families and project team members (graphic A). These opportunities focused on facilitating clinical navigation, navigating community services, and improving parental mental health. Forty-two stakeholders representing a children’s and women’s hospital, families, community care providers, and provincial bodies were engaged in this project. A rapid review of the literature was carried out using multiple databases searches to ensure comprehensiveness and flexible search strategies to ensure literature was found for all issues. This included a broader search of NICU discharges and nine targeted searches with medical complexity populations. Proposed solutions from stakeholders were further validated through comparisons with the literature and ultimately thirty-five papers were included in the evidence briefs. Specific care interventions were recommended to key healthcare decision makers, such as providing post-discharge care coordination in a specialized complex care clinic, implementing patient-oriented discharge summaries, and facilitating access to mental health resources. Using a seven point Likert scale the majority of stakeholders agreed that both the evidence briefs and deliberative dialogues were very successful in achieving their aim. Stakeholder intention to act on solutions presented in evidence briefs and deliberative dialogues were rated as very likely. CONCLUSION: Transitioning from NICU to community care is especially challenging for parents of infants with medical complexity. Families, care providers, and evidence reviews concur on focusing health care system efforts to improve non-technical parenting skills (e.g. self-care, stress management) and system navigation skills to improve outcomes for parents, infants, and families. Evidence briefs and deliberative dialogues appear to be highly regarded and to have resulted in intentions to act on key implementable solutions. [Image: see text]