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Headline
This study identified risk factors for adverse postdischarge outcomes in infants undergoing cardiac surgery and areas where improvement is needed in the quality of care of these infants, including specifically: additional monitoring for higher risk babies, standardised discharge documents, provision of training and guidance on ‘what is normal’ and ‘signs and symptoms to look for’, including how to respond to these.
Abstract
Background:
While early outcomes of paediatric cardiac surgery have improved, less attention has been given to later outcomes including post-discharge mortality and emergency readmissions.
Objectives:
Our 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).
Methods:
Systematic 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.
Results:
Despite 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.
Conclusions:
National 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 work:
Further 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 registration:
This study is registered as PROSPERO CRD42013003483 and CRD42013003484.
Funding:
The 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.
Contents
- Plain English summary
- Scientific summary
- Chapter 1. Introduction
- Chapter 2. Unexpected deaths and unplanned readmissions in infants discharged home after major surgery for congenital anomalies: a systematic review of potential risk factors
- Chapter 3. A systematic review of non-invasive interventions for infants discharged from hospital after major surgery for congenital anomalies
- Chapter 4. Development of a risk model for death or emergency readmission within 1 year following hospital discharge from infant cardiac intervention for congenital heart disease and identification of patient risk groups for the purposes of service improvement
- Chapter 5. Ethnic influences on the prevalence and outcomes of infants undergoing paediatric cardiac surgery for congenital heart defects
- Chapter 6. Qualitative study of family viewpoints expressed via an online discussion forum hosted by the Children’s Heart Federation
- Chapter 7. Signs of deterioration in infants discharged home following congenital heart surgery in the first year of life: a qualitative study
- Chapter 8. Going home after intervention for congenital heart disease in infancy: qualitative analyses of family and health professional viewpoints
- Chapter 9. Congenital heart charity helpline staff viewpoints: a qualitative study
- Chapter 10. Intervention development: suggestions for health care, proposed metrics for future monitoring and recommendations for future research directions
- Acknowledgements
- References
- Appendix 1 Electronic search strategy for risk factors systematic review
- Appendix 2 Evidence quality assessment framework
- Appendix 3 Electronic search strategy for interventions systematic review
- Appendix 4 Record of data search carried out within NCHDA and the trusted third-party site
- Appendix 5 Specific procedure hierarchy and groupings used for risk model and CART analyses in Chapter 4
- Appendix 6 Cardiac diagnosis hierarchy and groupings used for risk model and CART analyses in Chapter 4
- Appendix 7 Non-cardiac diagnosis and comorbidity information used for risk model and CART analyses in Chapter 4
- Appendix 8 Incidence of individual CHD subgroups by ethnic group (infants operated between 2006 and 2009)
- Appendix 9 Notes from the ‘Infant Heart Study Parent Workshop’ (19 July 2014)
- Appendix 10 Terms of reference and composition of the final intervention development meeting as referred to in Chapter 10
- Appendix 11 Infant Heart Study: recommendations and suggested metrics
- Appendix 12 NHS England congenital heart disease review consultation report: references to the Infant Heart Study
- List of abbreviations
Article history
The research reported in this issue of the journal was funded by the HS&DR programme or one of its preceding programmes as project number 10/2002/29. The contractual start date was in October 2012. The final report began editorial review in April 2015 and was accepted for publication in September 2015. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HS&DR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.
Declared competing interests of authors
Katherine Brown, Rodney Franklin, David Barron and David Cunningham are on the Steering Committee of the National Congenital Heart Diseases Audit (NCHDA). Sonya Crowe is a Health Improvement Science Fellow funded by the Health Foundation.
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