Identifying improvements to complex pathways: evidence synthesis and stakeholder engagement in infant congenital heart disease.
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.



A systematic evidence synthesis aligned with a process of eliciting the perspectives of families and professionals from community, primary, secondary and tertiary care.



UK.



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.



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.
Clinical Operational Research Unit, University College London, London, UK.
Sonya
S
Crowe
Population, Policy and Practice Programme, UCL Institute of Child Health, London, UK.
Rachel
R
Knowles
Great Ormond Street Hospital NHS Foundation Trust, London, UK.
Jo
J
Wray
Great Ormond Street Hospital NHS Foundation Trust, London, UK.
Jenifer
J
Tregay
Population, Policy and Practice Programme, UCL Institute of Child Health, London, UK.
Deborah A
DA
Ridout
Clinical Operational Research Unit, University College London, London, UK.
Martin
M
Utley
Royal Brompton and Harefield NHS Foundation Trust, London, UK.
Rodney
R
Franklin
Great Ormond Street Hospital NHS Foundation Trust, London, UK.
Catherine L
CL
Bull
Great Ormond Street Hospital NHS Foundation Trust, London, UK.
Katherine L
KL
Brown
D003150:Community Health Workers / Q000193:education; D006330:Heart Defects, Congenital / Q000401:mortality / Q000628:therapy*; D006699:Home Care Services / Q000592:standards*; D006801:Humans; D007223:Infant; D010290:Parents / Q000193:education; D010351:Patient Discharge; D010360:Patient Transfer / Q000379:methods*; D017410:Practice Guidelines as Topic; D000073597:Stakeholder Participation; D006113:United Kingdom
STATISTICS & RESEARCH METHODS