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Development and preliminary testing of the Brief Developmental Assessment: an early recognition tool for children with heart disease

Published online by Cambridge University Press:  13 February 2018

Jo Wray ,
Katherine L. Brown ,
Deborah Ridout ,
Monica Lakhanpaul ,
Liz Smith ,
Angie Scarisbrick ,
Sara O’Curry  and
Aparna Hoskote
Jo Wray*
Affiliation:
Charles West Division, Great Ormond Street Hospital for Children NHS Foundation Trust, Great Ormond Street, London, United Kingdom
Katherine L. Brown
Affiliation:
Charles West Division, Great Ormond Street Hospital for Children NHS Foundation Trust, Great Ormond Street, London, United Kingdom
Deborah Ridout
Affiliation:
Population, Policy and Practice Programme, UCL Great Ormond Street Institute of Child Health, London, United Kingdom
Monica Lakhanpaul
Affiliation:
Population, Policy and Practice Programme, UCL Great Ormond Street Institute of Child Health, London, United Kingdom
Liz Smith
Affiliation:
Charles West Division, Great Ormond Street Hospital for Children NHS Foundation Trust, Great Ormond Street, London, United Kingdom
Angie Scarisbrick
Affiliation:
Charles West Division, Great Ormond Street Hospital for Children NHS Foundation Trust, Great Ormond Street, London, United Kingdom
Sara O’Curry
Affiliation:
Paediatric Clinical Psychology, Addenbrookes Hospital, Cambridge, United Kingdom
Aparna Hoskote
Affiliation:
Charles West Division, Great Ormond Street Hospital for Children NHS Foundation Trust, Great Ormond Street, London, United Kingdom
*
Correspondence to: Dr J. Wray, Charles West Division, Great Ormond Street Hospital for Children NHS Foundation Trust, Great Ormond Street, London WC1N 3JH. Tel: 020 78297822; E-mail: [email protected]
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Abstract

Introduction

Neurodevelopmental abnormalities are common in children with CHD and are the highest-priority concerns for parents and professionals following cardiac surgery in childhood. There is no additional routine monitoring of development for children with CHD in the United Kingdom; hence, neurodevelopmental concerns may be detected late, precluding early referral and intervention.

Methods

An early recognition tool – the “Brief Developmental Assessment” – was developed using quality improvement methodology involving several iterations and rounds of pilot testing. Our requirements were for a tool covering important developmental domains and practicable for use within inpatient and outpatient settings by paediatric cardiac health professionals who are non-developmental specialists, without specialised equipment and which involved direct observation, as well as parental report.

Results

Items were included in the tool based on existing developmental measures, covering the domains of gross and fine motor skills, daily living skills, communication, socialisation, and general understanding. Items were developed for five age bands – 0–16 weeks, 17–34 weeks, 35–60 weeks, 15 months–2.9 years, and 3–4.9 years – and the final versions included a traffic light scoring system for identifying children with possible delay in any or all domains. Preliminary testing indicated excellent inter-rater reliability, an ability to detect children with a diagnosis known to be associated with developmental delay, and largely acceptable internal reliability.

Conclusion

We report the evolution and preliminary testing of an early recognition tool for assessing the development of children with heart disease; this was encouraging and sufficiently good to support further validation in a larger study.

Keywords

CHDneurodevelopmentalearly recognition tool
Type
Original Articles
Information
Cardiology in the Young , Volume 28 , Issue 4 , April 2018 , pp. 582 - 591
Copyright
© Cambridge University Press 2018 

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References

1. Van Der Linde, D, Konings, EE, Slager, MA, et al. Birth prevalence of congenital heart disease worldwide: a systematic review and meta-analysis. J Am Coll Cardiol 2011; 58: 2241–2247.Google Scholar
2. Mussatto, KA, Hoffmann, RG, Hoffman, GM, et al. Risk and prevalence of developmental delay in young children with congenital heart disease. Pediatrics 2014; 133: e570–e577.Google Scholar
3. Majnemer, A, Limperopoulos, C, Shevell, MI, Rohlicek, C, Rosenblatt, B, Tchervenkov, C. A new look at outcomes of infants with congenital heart disease. Pediatr Neurol 2009; 40: 197–204.Google Scholar
4. Snookes, SH, Gunn, JK, Eldridge, BJ, et al. A systematic review of motor and cognitive outcomes after early surgery for congenital heart disease. Pediatrics 2010; 125: e818–e827.CrossRefGoogle ScholarPubMed
5. Gaynor, JW, Stopp, C, Wypij, D, et al. Neurodevelopmental outcomes after cardiac surgery in infancy. Pediatrics 2015; 135: 816–825.Google Scholar
6. Long, SH, Harris, SR, Eldridge, BJ, Galea, MP. Gross motor development is delayed following early cardiac surgery. Cardiol Young 2012; 22: 574–582.Google Scholar
7. Goldberg, CS, Schwartz, EM, Brunberg, JA, et al. Neurodevelopmental outcome of patients after the fontan operation: a comparison between children with hypoplastic left heart syndrome and other functional single ventricle lesions. J Pediatr 2000; 137: 646–652.CrossRefGoogle ScholarPubMed
8. Hövels-Gürich, HH, Konrad, K, Skorzenski, D, et al. Long-term neurodevelopmental outcome and exercise capacity after corrective surgery for tetralogy of fallot or ventricular septal defect in infancy. Ann Thorac Surg 2006; 81: 958–966.Google Scholar
9. Kirshbom, PM, Flynn, TB, Clancy, RR, et al. Late neurodevelopmental outcome after repair of total anomalous pulmonary venous connection. J Thorac Cardiovasc Surg 2005; 129: 1091–1097.Google Scholar
10. Bellinger, DC, Jonas, RA, Rappaport, LA, et al. Developmental and neurologic status of children after heart surgery with hypothermic circulatory arrest or low-flow cardiopulmonary bypass. N Engl J Med 1995; 332: 549–555.Google Scholar
11. Bellinger, DC, Wypij, D, Kuban, KC, et al. Developmental and neurological status of children at 4 years of age after heart surgery with hypothermic circulatory arrest or low-flow cardiopulmonary bypass. Circulation 1999; 100: 526–532.CrossRefGoogle ScholarPubMed
12. Clancy, RR, Sharif, U, Ichord, R, et al. Electrographic neonatal seizures after infant heart surgery. Epilepsia 2005; 46: 84–90.Google Scholar
13. Rappaport, LA, Wypij, D, Bellinger, DC, et al. Relation of seizures after cardiac surgery in early infancy to neurodevelopmental outcome. Boston circulatory arrest study group. Circulation 1998; 97: 773–779.Google Scholar
14. Marino, BS, Beebe, D, Cassedy, A, et al. Executive functioning, gross motor ability and mood are key drivers of poorer quality of life in child and adolescent survivors with complex congenital heart disease. J Am Coll Cardiol 2011; 57: E421.Google Scholar
15. Bellinger, DC, Wypij, D, Duplessis, AJ, et al. Neurodevelopmental status at eight years in children with dextro-transposition of the great arteries: the Boston Circulatory Arrest Trial. J Thorac Cardiovasc Surg 2003; 126: 1385–1396.Google Scholar
16. Mahle, WT, Clancy, RR, Moss, EM, Gerdes, M, Jobes, DR, Wernovsky, G. Neurodevelopmental outcome and lifestyle assessment in school-aged and adolescent children with hypoplastic left heart syndrome. Pediatrics 2000; 105: 1082–1089.Google Scholar
17. Brosig, CL, Mussatto, KA, Kuhn, EM, Tweddell, JS. Neurodevelopmental outcome in preschool survivors of complex congenital heart disease: implications for clinical practice. J Pediatr Health Care 2007; 21: 3–12.Google Scholar
18. Miatton, M, De Wolf, D, Francois, K, Thiery, E, Vingerhoets, G. Neuropsychological performance in school-aged children with surgically corrected congenital heart disease. J Pediatr 2007; 151: 73–78; 78 e71.CrossRefGoogle ScholarPubMed
19. Miatton, M, De Wolf, D, François, K, Thiery, E, Vingerhoets, G. Intellectual, neuropsychological, and behavioral functioning in children with tetralogy of fallot. J Thorac Cardiovasc Surg 2007; 133: 449–455.Google Scholar
20. Hövels-Gürich, HH, Konrad, K, Skorzenski, D, Herpertz-Dahlmann, B, Messmer, BJ, Seghaye, M-C. Attentional dysfunction in children after corrective cardiac surgery in infancy. Ann Thorac Surg 2007; 83: 1425–1430.Google Scholar
21. Shillingford, AJ, Glanzman, MM, Ittenbach, RF, Clancy, RR, Gaynor, JW, Wernovsky, G. Inattention, hyperactivity, and school performance in a population of school-age children with complex congenital heart disease. Pediatrics 2008; 121: e759–e767.Google Scholar
22. Mussatto, KA, Hoffmann, R, Hoffman, G, et al. Risk factors for abnormal developmental trajectories in young children with congenital heart disease. Circulation 2015; 132: 755–761.CrossRefGoogle ScholarPubMed
23. Marino, BS, Lipkin, PH, Newburger, JW, et al. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation 2012; 126: 1143–1172.Google Scholar
24. Bright Futures Steering Committee and Medical Home Initiatives for Children with Special Needs Project Advisory Committee. Identifying infants and young children with developmental disorders in the medical home: an algorithm for developmental surveillance and screening. Pediatrics 2006; 118: 405–420.Google Scholar
25. Mcgrath, E, Wypij, D, Rappaport, LA, Newburger, JW, Bellinger, DC. Prediction of Iq and achievement at age 8 years from neurodevelopmental status at age 1 year in children with D-transposition of the great arteries. Pediatrics 2004; 114: e572–e576.Google Scholar
26. Soto, CB, Olude, O, Hoffmann, RG, et al. Implementation of a routine developmental follow-up program for children with congenital heart disease: early results. Congenit Heart Dis 2011; 6: 451–460.Google Scholar
27. Brown, KL, Pagel, C, Brimmell, R, et al. Definition of important early morbidities related to paediatric cardiac surgery. Cardiol Young 2017; 27: 747–756.Google Scholar
28. Pagel, C, Brown, KL, Mcleod, I, et al. Selection by a panel of clinicians and family representatives of important early morbidities associated with paediatric cardiac surgery suitable for routine monitoring using the nominal group technique and a robust voting process. BMJ Open 2017; 7: e014743.CrossRefGoogle Scholar
29. Tsang, V, Anderson, D, Barron, D, et al. Selection, definition and evaluation of important early morbidities associated with paediatric cardiac surgery. 2014. http://www.nets.nihr.ac.uk/projects/hsdr/12500506.Google Scholar
30. Bayley, N, Reuner, G. Bayley Scales of Infant and Toddler Development: Bayley-III. Harcourt Assessment, San Antonio, Texas, 2006.Google Scholar
31. Griffiths, R. Griffiths Mental Development Scales. Test Agency, High Wycombe, UK, 1976.Google Scholar
32. Mullen, EM. Mullen Scales of Early Learning. American Guidance Services, Circle Pines, Minnesota, 1995.Google Scholar
33. Folio, MR, Fewell, RR. Peabody Developmental Motor Scales: Examiner’s Manual. Pro-ed; Austin, Texas, 2000.Google Scholar
34. Fischer, VJ, Morris, J, Martines, J. Developmental screening tools: feasibility of use at primary healthcare level in low-and middle-income settings. J Health Popul Nutr 2014; 32: 314.Google Scholar
35. Kliegman, RM, Behrman, RE, Jenson, HB, Stanton, BM. Nelson Textbook of Pediatrics. Elsevier Health Sciences; Philadelphia, Pennsylvania, 2007.Google Scholar
36. Illingworth, RS. The Development of the Infant and the Young Child: Normal and Abnormal. Elsevier Health Sciences; Cambridge, Massachusetts, 2013.Google Scholar
37. Morelli, DL, Pati, S, Butler, A, et al. Challenges to implementation of developmental screening in urban primary care: a mixed methods study. BMC Pediatr 2014; 14: 16.Google Scholar
38. 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.Google Scholar
39. Brown, KL, Crowe, S, Franklin, R, et al. Trends in 30-day mortality rate and case mix for paediatric cardiac surgery in the UK between 2000 and 2010. Open Heart 2015; 2: e000157.Google Scholar
40. Robertson, JM, Hatton, C, Emerson, E. The identification of children with or at significant risk of intellectual disabilities in low and middle income countries: a review. Journal of Applied Research in Intellectual Disabilities 2012; 25: 99–118.Google Scholar
41. Sun, L, Macgowan, CK, Sled, JG, et al. Reduced fetal cerebral oxygen consumption is associated with smaller brain size in fetuses with congenital heart disease. Circulation 2015; 131: 1313–1323.Google Scholar
42. Licht, DJ, Wang, J, Silvestre, DW, et al. Preoperative cerebral blood flow is diminished in neonates with severe congenital heart defects. J Thorac Cardiovasc Surg 2004; 128: 841–849.Google Scholar
43. Gaynor, JW, Nord, AS, Wernovsky, G, et al. Apolipoprotein E genotype modifies the risk of behavior problems after infant cardiac surgery. Pediatrics 2009; 124: 241–250.Google Scholar
44. Mccoy, DC, Sudfeld, CR, Bellinger, DC, et al. Development and validation of an early childhood development scale for use in low-resourced settings. Popul Health Metr 2017; 15: 3.Google Scholar
45. Brown, K, Ridout, D, Pagel, C, et al. Validation of the Brief Developmental Assessment in pre-school children with heart disease. Cardiol Young accepted for publication.Google Scholar
46. Maxim, LD, Niebo, R, Utell, MJ. Screening tests: a review with examples. Inhal Toxicol 2014; 26: 811–828.Google Scholar
47. Cicchetti, DV, Volkmar, F, Klin, A, Showalter, D. Diagnosing autism using ICD-10 criteria: a comparison of neural networks and standard multivariate procedures. Child Neuropsychol 1995; 1: 26–37.Google Scholar
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