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Identifying improvements to complex pathways: evidence synthesis and stakeholder engagement in infant congenital
Sonya Crowe1, Rachel Knowles2, Jo Wray3
1Clinical Operational Research Unit, University College London, London, UK.
Insights
Improving care for infants with congenital heart disease after hospital discharge is crucial. Recommendations focus on structured documentation, risk-stratified care, and early warning tools to reduce infant mortality and support families.
Area of Science:
- Pediatric Cardiology
- Healthcare Systems
- Patient Outcomes
Background:
- Congenital heart disease interventions carry a significant mortality risk for infants post-discharge (3-5%).
- Care variability and access barriers complicate post-discharge support for affected families.
- There is a critical need to optimize care transitions for this vulnerable population.
Purpose of the Study:
- To identify strategies for enhancing discharge and post-discharge care for infants with congenital heart disease.
- To address variability and barriers in care provision during the critical year after intervention.
- To develop evidence-based recommendations for improved infant outcomes.
Main Methods:
- Systematic evidence synthesis was employed.
- Elicitation of perspectives from families and healthcare professionals across various care settings (community, primary, secondary, tertiary) was conducted.
- A UK-based study setting informed the synthesis.
Main Results:
- Evidence-informed recommendations were developed to improve infant care post-intervention.
- Recommendations target specific patient groups based on risk and affected numbers, considering resource constraints.
- Key recommendations include structured discharge documentation, local hospital discharge for high-risk infants, enhanced surveillance, and an early warning tool for parents and professionals.
Conclusions:
- The recommendations propose a comprehensive, system-wide approach to improve discharge and post-discharge services.
- This framework can address care gaps for other patient populations transitioning between sectors.
- Implementing these recommendations aims to reduce adverse outcomes and enhance support for infants with congenital heart disease.
Objectives:
Many infants die in the year following discharge from hospital after surgical or catheter intervention for congenital heart disease (3-5% of discharged infants). There is considerable variability in the provision of care and support in this period, and some families experience barriers to care. We aimed to identify ways to improve discharge and postdischarge care for this patient group.
Design:
A systematic evidence synthesis aligned with a process of eliciting the perspectives of families and professionals from community, primary, secondary and tertiary care.
Setting:
UK.
Results:
A set of evidence-informed recommendations for improving the discharge and postdischarge care of infants following intervention for congenital heart disease was produced. These address known challenges with current care processes and, recognising current resource constraints, are targeted at patient groups based on the number of patients affected and the level and nature of their risk of adverse 1-year outcome. The recommendations include: structured discharge documentation, discharging certain high-risk patients via their local hospital, enhanced surveillance for patients with certain (high-risk) cardiac diagnoses and an early warning tool for parents and community health professionals.
Conclusions:
Our recommendations set out a comprehensive, system-wide approach for improving discharge and postdischarge services. This approach could be used to address challenges in delivering care for other patient populations that can fall through gaps between sectors and organisations.
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