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Unexpected deaths and unplanned re-admissions in infants discharged home after cardiac surgery: a systematic review of potential risk factors

Published online by Cambridge University Press:  30 December 2014

Jenifer Tregay ,
Jo Wray ,
Catherine Bull ,
Rodney C. Franklin ,
Piers Daubeney ,
David J. Barron ,
Katherine Brown  and
Rachel L. Knowles Open the ORCID record for Rachel L. Knowles [Opens in a new window]
Jenifer Tregay
Affiliation:
Cardiorespiratory Unit, Great Ormond Street Hospital NHS Foundation Trust, London, United Kingdom
Jo Wray
Affiliation:
Cardiorespiratory Unit, Great Ormond Street Hospital NHS Foundation Trust, London, United Kingdom
Catherine Bull
Affiliation:
Cardiorespiratory Unit, Great Ormond Street Hospital NHS Foundation Trust, London, United Kingdom
Rodney C. Franklin
Affiliation:
Department of Paediatric Cardiology, Royal Brompton & Harefield NHS Trust, London, United Kingdom
Piers Daubeney
Affiliation:
Department of Paediatric Cardiology, Royal Brompton & Harefield NHS Trust, London, United Kingdom
David J. Barron
Affiliation:
Cardiac Unit, Birmingham Children’s Hospital NHS Foundation Trust, Birmingham, United Kingdom
Katherine Brown
Affiliation:
Cardiorespiratory Unit, Great Ormond Street Hospital NHS Foundation Trust, London, United Kingdom
Rachel L. Knowles*
Affiliation:
Population Policy and Practice Programme, UCL Institute of Child Health, London, United Kingdom
*
Correspondence to: Dr RL Knowles, Population, Policy and Practice Programme, Institute of Child Health, University College London, 30 Guilford St, London WC1N 1EH. Tel: +44(0)20 7905 2278; E-mail: [email protected]
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Abstract

Background

Babies with CHDs are a particularly vulnerable population with significant mortality in their 1st year. Although most deaths occur in the hospital within the early postoperative period, around one-fifth of postoperative deaths in the 1st year of life may occur after hospital discharge in infants who have undergone apparently successful cardiac surgery.

Aim

To systematically review the published literature and identify risk factors for adverse outcomes, specifically deaths and unplanned re-admissions, following hospital discharge after infant surgery for life-threatening CHDs.

Methods

A systematic search was conducted in MEDLINE, EMBASE, CINAHL, Cochrane Library, Web of Knowledge, and PsycINFO electronic databases, supplemented by manual searching of conference abstracts.

Results

A total of 15 studies were eligible for inclusion. Almost exclusively, studies were conducted in single US centres and focussed on children with complex single ventricle diagnoses. A wide range of risk factors were evaluated, and those more frequently identified as having a significant association with higher mortality or unplanned re-admission risk were non-Caucasian ethnicity, lower socio-economic status, co-morbid conditions, age at surgery, operative complexity and procedure type, and post-operative feeding difficulties.

Conclusions

Studies investigating risk factors for adverse outcomes post-discharge following diverse congenital heart operations in infants are lacking. Further research is needed to systematically identify higher risk groups, and to develop interventions targeted at supporting the most vulnerable infants within an integrated primary and secondary care pathway.

Keywords

Congenital heart diseasesystematic reviewsurgical outcomesmortality
Type
Review Article
Information
Cardiology in the Young , Volume 25 , Issue 5 , June 2015 , pp. 839 - 852
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Copyright
© Cambridge University Press 2014 

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References

1. Knowles, RL, Bull, C, Wren, C, Dezateux, C. Mortality with congenital heart defects in England and Wales, 1959-2009: exploring technological change through period and birth cohort analysis. Arch Dis Child 2012; 97: 861–865.CrossRefGoogle ScholarPubMed
2. Kurinczuk, JJ, Hollowell, J, Boyd, PA, et al. Inequalities in Infant Mortality Project Briefing Paper 4: The contribution of congenital anomalies to infant mortality. University of Oxford, National Perinatal Epidemiology Unit, Oxford, 2010.Google Scholar
3. Billett, J, Majeed, A, Gatzoulis, M, Cowie, M. Trends in hospital admissions, in-hospital case fatality and population mortality from congenital heart disease in England, 1994 to 2004. Heart 2008; 94: 342–348.CrossRefGoogle ScholarPubMed
4. NICOR: National Institute for Cardiovascular Outcomes Research. Congenital Heart Disease Website. Retrieved August 29, 2014, from https://nicor4.nicor.org.uk/CHD/an_paeds.nsf/vwContent/home?Opendocument Google Scholar
5. Hindocha NBA. When, where and why do babies die after neonatal surgery for congenital heart disease? National Medical Student Research Conference Abstracts, Medical Acorn Foundation. London, UK, 2010.Google Scholar
6. Azakie, T, Merklinger, SL, McCrindle, BW, et al. Evolving strategies and improving outcomes of the modified Norwood procedure: a 10-year single-institution experience. Ann Thorac Surg 2001; 72: 1349–1353.CrossRefGoogle ScholarPubMed
7. Gilboa, SM, Salemi, JL, Nembhard, WN, et al. Mortality resulting from congenital heart disease among children and adults in the United States, 1999 to 2006. Circulation 2010; 122: 2254–2263.CrossRefGoogle ScholarPubMed
8. Jenkins, KJ, Gauvreau, K, Newburger, JW, et al. Consensus-based method for risk adjustment for surgery for congenital heart disease. J Thorac Cardiovasc Surg 2002; 123: 110–118.CrossRefGoogle ScholarPubMed
9. Lacour-Gayet, F, Clarke, D, Jacobs, J, et al. The Aristotle score for congenital heart surgery. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2004; 7: 185–191.CrossRefGoogle ScholarPubMed
10. Crowe, S, Brown, KL, Pagel, C, et al. Development of a diagnosis- and procedure-based risk model for 30-day outcome after pediatric cardiac surgery. J Thorac Cardiovasc Surg 2013; 145: 1270–1278.CrossRefGoogle ScholarPubMed
11. O’Brien, SM, Clarke, DR, Jacobs, JP, et al. An empirically based tool for analyzing mortality associated with congenital heart surgery. J Thorac Cardiovasc Surg 2009; 138: 1139–1153.CrossRefGoogle ScholarPubMed
12. American Academy of Pediatrics Committee on Fetus and Newborn. Hospital discharge of the high-risk neonate. Pediatrics 2008; 122: 1119–1126.CrossRefGoogle Scholar
13. NHS England. New review of congenital heart services. Board Paper – NHS England: NHSE180713. Retrieved August 29, 2014, from http://www.england.nhs.uk/wp-content/uploads/2013/07/180713-item13.pdf Google Scholar
14. Morley, PT. Quality assessment for indvidual studies to be used for the review of resuscitation science for 2010. American Heart Association International Liaison Committee on Resuscitation (ILCOR), 2008. Retrieved August 29, 2014, from http://www.heart.org/idc/groups/heart-public/@wcm/@private/@ecc/documents/downloadable/ucm_308201.pdf Google Scholar
15. Tregay, J, Wray, J, Brown, KL, Knowles, RL. A systematic review of risk factors associated with adverse outcomes for infants discharged from hospital after major surgery for congenital anomalies. PROSPERO 2013: CRD42013003483. Retrieved August 29, 2014, from http://www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42013003483.Google Scholar
16. Ashburn, DA, McCrindle, BW, Tchervenkov, CI, et al. Outcomes after the Norwood operation in neonates with critical aortic stenosis or aortic valve atresia. J Thorac Cardiovasc Surg 2003; 125: 1070–1082.CrossRefGoogle ScholarPubMed
17. Carlo, WF, Carberry, KE, Heinle, JS, et al. Interstage attrition between bidirectional Glenn and Fontan palliation in children with hypoplastic left heart syndrome. J Thorac Cardiovasc Surg 2011; 142: 511–516.CrossRefGoogle ScholarPubMed
18. Edwards, JD, Kun, SS, Keens, TG, et al. Children with corrected or palliated congenital heart disease on home mechanical ventilation. Pediatr Pulm 2010; 45: 645–649.CrossRefGoogle ScholarPubMed
19. Ghanayem, NS, Allen, KR, Tabbutt, S, et al. Interstage mortality after the Norwood procedure: results of the multicenter single ventricle reconstruction trial. J Thorac Cardiovasc Surg 2012; 144: 896–906.CrossRefGoogle ScholarPubMed
20. Hansen, JH, Uebing, A, Furck, AK, et al. Risk factors for adverse outcome after superior cavopulmonary anastomosis for hypoplastic left heart syndrome. Eur J Cardiothorac Surg 2011; 40: e43–e49.CrossRefGoogle ScholarPubMed
21. Mahle, WT, Spray, TL, Gaynor, JW, Clark, BJ. Unexpected death after reconstructive surgery for hypoplastic left heart syndrome. Ann Thorac Surg 2001; 71: 61–65.CrossRefGoogle ScholarPubMed
22. Pinto, NM, Lasa, J, Dominguez, TE, et al. Regionalization in neonatal congenital heart surgery: the impact of distance on outcome after discharge. Pediatr Cardiol 2012; 33: 229–238.CrossRefGoogle ScholarPubMed
23. Simsic, JM, Bradley, SM, Stroud, MR, Atz, AM. Risk factors for interstage death after the Norwood procedure. Pediatr Cardiol 2005; 26: 400–403.CrossRefGoogle ScholarPubMed
24. Chang, RK, Rodriguez, S, Lee, M, Klitzner, TS. Risk factors for deaths occurring within 30 days and 1 year after hospital discharge for cardiac surgery among pediatric patients. Am Heart J 2006; 152: 386–393.CrossRefGoogle ScholarPubMed
25. Fixler, DE, Nembhard, WN, Xu, P, et al. Effect of acculturation and distance from cardiac center on congenital heart disease mortality. Pediatrics 2012; 129: 1118–1124.CrossRefGoogle ScholarPubMed
26. Hebson, CL, Oster, ME, Kirshbom, PM, et al. Association of feeding modality with interstage mortality after single-ventricle palliation. J Thorac Cardiovasc Surg 2012; 144: 173–177.CrossRefGoogle ScholarPubMed
27. Kogon, B, Jain, A, Oster, M, et al. Risk factors associated with readmission after pediatric cardiothoracic surgery. Ann Thorac Surg 2012; 94: 865–873.CrossRefGoogle ScholarPubMed
28. Hehir, DA, Dominguez, TE, Ballweg, JA, et al. Risk factors for interstage death after stage 1 reconstruction of hypoplastic left heart syndrome and variants. J Thorac Cardiovasc Surg 2008; 136: 94–99.CrossRefGoogle ScholarPubMed
29. Mackie, AS, Gauvreau, K, Newburger, JW, et al. Risk factors for readmission after neonatal cardiac surgery. Ann Thorac Surg 2004; 78: 1972–1978.CrossRefGoogle ScholarPubMed
30. Ohye, RG, Schonbeck, JV, Eghtesady, P, et al. Cause, timing, and location of death in the single ventricle reconstruction trial. J Thorac Cardiovasc Surg 2012; 144: 907–914.CrossRefGoogle ScholarPubMed
31. Jenkins, KJ. Risk adjustment for congenital heart surgery: the RACHS-1 method. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2004; 7: 180–184.CrossRefGoogle ScholarPubMed
32. Davis, PJ, Firmin, RK, Manktelow, B, et al. Long-term outcome following extracorporeal membrane oxygenation for congenital diaphragmatic hernia: the UK experience. J Pediatr 2004; 144: 309–315.CrossRefGoogle ScholarPubMed
33. Tweddell, JS, Hoffman, GM, Mussatto, KA, et al. Improved survival of patients undergoing palliation of hypoplastic left heart syndrome: lessons learned from 115 consecutive patients. Circulation 2002; 106 (Suppl 1): I82–I89.CrossRefGoogle ScholarPubMed
34. McGuirk, SP, Griselli, M, Stumper, OF, et al. Staged surgical management of hypoplastic left heart syndrome: a single institution 12 year experience. Heart 2006; 92: 364–370.CrossRefGoogle Scholar
35. Ghanayem, NS, Hoffman, GM, Mussatto, KA, et al. Home surveillance program prevents interstage mortality after the Norwood procedure. J Thorac Cardiovasc Surg 2003; 126: 1367–1377.CrossRefGoogle ScholarPubMed
36. Cristancho, S, Garces, DM, Peters, KE, Mueller, BC. Listening to rural hispanic immigrants in the midwest: a community-based participatory assessment of major barriers to health care access and use. Qual Health Res 2008; 18: 633–646.CrossRefGoogle ScholarPubMed
37. Valdez, RB, Giachello, A, Rodriguez-Trias, H, et al. Improving access to health care in Latino communities. Public Health Rep 1993; 108: 534–539.Google ScholarPubMed
38. DeMone, JA, Gonzalez, PC, Gauvreau, K, et al. Risk of death for Medicaid recipients undergoing congenital heart surgery. Pediatr Cardiol 2003; 24: 97–102.CrossRefGoogle ScholarPubMed
39. Fixler, DE, Nembhard, WN, Salemi, JL, et al. Mortality in first 5 years in infants with functional single ventricle born in Texas, 1996 to 2003. Circulation 2010; 121: 644–650.CrossRefGoogle ScholarPubMed
40. Flores, G. Technical report – racial and ethnic disparities in the health and health care of children. Pediatrics 2010; 125: e979–e1020.CrossRefGoogle ScholarPubMed
41. Flores, G, Lin, H. Trends in racial/ethnic disparities in medical and oral health, access to care, and use of services in US children: has anything changed over the years? Int J Equity Health 2013; 12: 10.CrossRefGoogle ScholarPubMed
42. Nembhard, WN, Salemi, JL, Ethen, MK, et al. Racial/ethnic disparities in risk of early childhood mortality among children with congenital heart defects. Pediatrics 2011; 127: e1128–e1138.CrossRefGoogle ScholarPubMed
43. Connor, JA, Kline, NE, Mott, S, et al. The meaning of cost for families of children with congenital heart disease. J Pediatr Health Care 2010; 24: 318–325.CrossRefGoogle ScholarPubMed
44. Golbus, JR, Wojcik, BM, Charpie, JR, Hirsch, JC. Feeding complications in hypoplastic left heart syndrome after the Norwood procedure: a systematic review of the literature. Pediatr Cardiol 2011; 32: 539–552.CrossRefGoogle ScholarPubMed