Death and Emergency Readmission of Infants Discharged After Interventions for Congenital Heart Disease: A National Study of 7643 Infants to Inform Service Improvement

Abstract

BackgroundImprovements in hospital‐based care have reduced early mortality in congenital heart disease. Later adverse outcomes may be reducible by focusing on care at or after discharge. We aimed to identify risk factors for such events within 1 year of discharge after intervention in infancy and, separately, to identify subgroups that might benefit from different forms of intervention.Methods and ResultsCardiac procedures performed in infants between 2005 and 2010 in England and Wales from the UK National Congenital Heart Disease Audit were linked to intensive care records. Among 7976 infants, 333 (4.2%) died before discharge. Of 7643 infants discharged alive, 246 (3.2%) died outside the hospital or after an unplanned readmission to intensive care (risk factors were age, weight‐for‐age, cardiac procedure, cardiac diagnosis, congenital anomaly, preprocedural clinical deterioration, prematurity, ethnicity, and duration of initial admission; c‐statistic 0.78 [0.75–0.82]). Of the 7643, 514 (6.7%) died outside the hospital or had an unplanned intensive care readmission (same risk factors but with neurodevelopmental condition and acquired cardiac diagnosis and without preprocedural deterioration; c‐statistic 0.78 [0.75–0.80]). Classification and regression tree analysis were used to identify 6 subgroups stratified by the level (3–24%) and nature of risk for death outside the hospital or unplanned intensive care readmission based on neurodevelopmental condition, cardiac diagnosis, congenital anomaly, and duration of initial admission. An additional 115 patients died after planned intensive care admission (typically following elective surgery).ConclusionsAdverse outcomes in the year after discharge are of similar magnitude to in‐hospital mortality, warrant service improvements, and are not confined to diagnostic groups currently targeted with enhanced monitoring.

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

“…The group met on five occasions (each 2–3 hours) between March 2013 and June 2014 to consider emerging findings regarding UK service provision and outcomes in this patient population. The research presented to the advisory group included: A systematic review of potential risk factors for unexpected deaths and unplanned readmissions following discharge;14A systematic review of postdischarge surveillance or intervention programmes;31Analyses of national CHD and paediatric intensive care audit data sets, which identified patient groups with different risk of death or emergency readmission to intensive care in the year following discharge 11

Interviews with parents and health professionals regarding their experiences at or following discharge;12 13 32

An online discussion forum with parents regarding their experiences accessing support 31

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“…11 The groups are defined by combinations of risk factors known at the point of discharge and differ in terms of risk of death or emergency readmission to paediatric intensive care within a year of discharge. Risk factors include: presence of a neurodevelopmental condition such as cerebral palsy (see ‡ in figure 3), a congenital anomaly such as urogenital/renal malformations (see † in figure 3) and a ‘high-risk’ primary cardiac diagnosis (complex CHD such as hypoplastic left heart syndrome or pulmonary atresia where the sole source of pulmonary blood supply after neonatal surgery is a systemic-to-pulmonary arterial shunt; see †† in figure 3).…”

“…Patient groups identified and validated in statistical analysis of national cardiac and Paediatric Intensive Care Unit (PICU) audit data 11. The six mutually exclusive groups are defined with respect to the following patient characteristics: absence/presence of neurodevelopmental condition‡, absence/presence of congenital anomaly†, low-risk/high-risk primary cardiac diagnosis†† and length of stay > or <1 month.…”

“…To date, research has largely focused on in-hospital and short-term outcomes 7–10. However, there is now an established body of evidence showing appreciable mortality postdischarge (3–5%)11 and problems in accessing and providing appropriate support for babies and their families following discharge 12–16…”

Improving risk adjustment in the PRAiS (Partial Risk Adjustment in Surgery) model for mortality after paediatric cardiac surgery and improving public understanding of its use in monitoring outcomes

“…6,92 Examples are reducing post-discharge deaths (3.2% for infants); addressing barriers to accessing care in the community; reducing complications following surgery; reducing loss to follow-up after hospital discharge, particularly when moving from paediatric to adult services; and improving reporting of outcomes for adult patients. 36,41,42,[93][94][95][96][97] The 2015 NHS England review of CHD services called for better reporting of quality using a broader range of outcomes relevant to a range of stakeholders, including parent and adult patient groups. 92 The facets of quality given above are merely examples, and different stakeholders will have different perspectives on the importance of different possible quality criteria.…”