Infant deaths in the UK community following successful cardiac surgery: building the evidence base for optimal surveillance, a mixed-methods study
Authors: Brown Katherine L , Wray Jo , Knowles Rachel L , Crowe Sonya , Tregay Jenifer , Ridout Deborah , Barron David J , Cunningham David , Parslow Roger , Franklin Rodney , Barnes Nick , Hull Sally , Bull Catherine 
Published: June 2016

BackgroundWhile early outcomes of paediatric cardiac surgery have improved, less attention has been given to later outcomes including post-discharge mortality and emergency readmissions.ObjectivesOur objectives were to use a mixed-methods approach to build an evidenced-based guideline for postdischarge management of infants undergoing interventions for congenital heart disease (CHD).MethodsSystematic reviews of the literature – databases used: MEDLINE (1980 to 1 February 2013), EMBASE (1980 to 1 February 2013), Cumulative Index to Nursing and Allied Health Literature (CINAHL; 1981 to 1 February 2013), The Cochrane Library (1999 to 1 February 2013), Web of Knowledge (1980 to 1 February 2013) and PsycINFO (1980 to 1 February 2013). Analysis of audit data from the National Congenital Heart Disease Audit and Paediatric Intensive Care Audit Network databases pertaining to records of infants undergoing interventions for CHD between 1 January 2005 and 31 December 2010. Qualitative analyses of online discussion posted by 73 parents, interviews with 10 helpline staff based at user groups, interviews with 20 families whose infant either died after discharge or was readmitted urgently to intensive care, and interviews with 25 professionals from tertiary care and 13 professionals from primary and secondary care. Iterative multidisciplinary review and discussion of evidence incorporating the views of parents on suggestions for improvement.ResultsDespite a wide search strategy, the studies identified for inclusion in reviews related only to patients with complex CHD, for whom adverse outcome was linked to non-white ethnicity, lower socioeconomic status, comorbidity, age, complexity and feeding difficulties. There was evidence to suggest that home monitoring programmes (HMPs) are beneficial. Of 7976 included infants, 333 (4.2%) died postoperatively, leaving 7634 infants, of whom 246 (3.2%) experienced outcome 1 (postdischarge death) and 514 (6.7%) experienced outcome 2 (postdischarge death plus emergency intensive care readmissions). Multiple logistic regression models for risk of outcomes 1 and 2 had areas under the receiver operator curve of 0.78 [95% confidence interval (CI) 0.75 to 0.82] and 0.78 (95% CI 0.75 to 0.80), respectively. Six patient groups were identified using classification and regression tree analysis to stratify by outcome 2 (range 3–24%), which were defined in terms of neurodevelopmental conditions, high-risk cardiac diagnosis (hypoplastic left heart, single ventricle or pulmonary atresia), congenital anomalies and length of stay (LOS) > 1 month. Deficiencies and national variability were noted for predischarge training and information, the process of discharge to non-specialist services including documentation, paediatric cardiology follow-up including HMP, psychosocial support post discharge and the processes for accessing help when an infant becomes unwell.ConclusionsNational standardisation may improve discharge documents, training and guidance on ‘what is normal’ and ‘signs and symptoms to look for’, including how to respond. Infants with high-risk cardiac diagnoses, neurodevelopmental conditions or LOS > 1 month may benefit from discharge via their local hospital. HMP is suggested for infants with hypoplastic left heart, single ventricle or pulmonary atresia. Discussion of postdischarge deaths for infant CHD should occur at a network-based multidisciplinary meeting. Audit is required of outcomes for this stage of the patient journey.Future workFurther research may determine the optimal protocol for HMPs, evaluate the use of traffic light tools for monitoring infants post discharge and develop the analytical steps and processes required for audit of postdischarge metrics.Study registrationThis study is registered as PROSPERO CRD42013003483 and CRD42013003484.FundingThe National Institute for Health Research Health Services and Delivery Research programme. The National Congenital Heart Diseases Audit (NCHDA) and Paediatric Intensive Care Audit Network (PICANet) are funded by the National Clinical Audit and Patient Outcomes Programme, administered by the Healthcare Quality Improvement Partnership (HQIP). PICAnet is also funded by Welsh Health Specialised Services Committee; NHS Lothian/National Service Division NHS Scotland, the Royal Belfast Hospital for Sick Children, National Office of Clinical Audit Ireland, and HCA International. The study was supported by the National Institute for Health Research Biomedical Research Centre at Great Ormond Street Hospital for Children NHS Foundation Trust and University College London. Sonya Crowe was supported by the Health Foundation, an independent charity working to continuously improve the quality of health care in the UK.