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Prevalence and risk factors associated with non-attendance in neurodevelopmental follow-up clinic among infants with CHD

  • Eméfah C. Loccoh (a1), Sunkyung Yu (a1), Janet Donohue (a1), Ray Lowery (a1), Jennifer Butcher (a2), Sara K. Pasquali (a1), Caren S. Goldberg (a1) and Karen Uzark (a1)...



Neurodevelopmental impairment is increasingly recognised as a potentially disabling outcome of CHD and formal evaluation is recommended for high-risk patients. However, data are lacking regarding the proportion of eligible children who actually receive neurodevelopmental evaluation, and barriers to follow-up are unclear. We examined the prevalence and risk factors associated with failure to attend neurodevelopmental follow-up clinic after infant cardiac surgery.


Survivors of infant (<1 year) cardiac surgery at our institution (4/2011-3/2014) were included. Socio-demographic and clinical characteristics were evaluated in neurodevelopmental clinic attendees and non-attendees in univariate and multivariable analyses.


A total of 552 patients were included; median age at surgery was 2.4 months, 15% were premature, and 80% had moderate–severe CHD. Only 17% returned for neurodevelopmental evaluation, with a median age of 12.4 months. In univariate analysis, non-attendees were older at surgery, had lower surgical complexity, fewer non-cardiac anomalies, shorter hospital stay, and lived farther from the surgical center. Non-attendee families had lower income, and fewer were college graduates or had private insurance. In multivariable analysis, lack of private insurance remained independently associated with non-attendance (adjusted odds ratio 1.85, p=0.01), with a trend towards significance for distance from surgical center (adjusted odds ratio 2.86, p=0.054 for ⩾200 miles).


The majority of infants with CHD at high risk for neurodevelopmental dysfunction evaluated in this study are not receiving important neurodevelopmental evaluation. Efforts to remove financial/insurance barriers, increase access to neurodevelopmental clinics, and better delineate other barriers to receipt of neurodevelopmental evaluation are needed.


Corresponding author

Correspondence to: K. Uzark, PhD, CPNP University of Michigan Mott Children’s Hospital, L2108 Women’s, SPC 5204, 1500 E. Medical Center Drive, Ann Arbor, MI 48109-5204, United States of America. Tel: 734 615 9748; Fax: (734) 232 3744; E-mail:


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1. Upham, M, Medoff-Cooper, B. What are the responses & needs of mothers of infants diagnosed with congenital heart disease? MCN Am J Matern Child Nurs 2005; 30: 2429.
2. Jerrell, JM, Shuler, CO, Tripathi, A, Black, GB, Park, Y-MM. Long-term neurodevelopmental outcomes in children and adolescents with congenital heart disease. Primary Care Companion CNS Disord 2015; 17: 5,
3. 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: 11431172.
4. Gaynor, JW, Stopp, C, Wypij, D, et al. Neurodevelopmental outcomes after cardiac surgery in infancy. Pediatrics 2015; 135: 816825.
5. Donofrio, MT, Massaro, AN. Impact of congenital heart disease on brain development and neurodevelopmental outcome. Int J Pediatr 2010; 2010: 13 pages, doi:10.1155/2010/359390.
6. Hövels-Gürich, HH, Seghaye, M-C, Däbritz, S, Messmer, BJ, von Bernuth, G. Cognitive and motor development in preschool and school-aged children after neonatal arterial switch operation. J Thorac Cardiovasc Surg 1997; 114: 578585.
7. Khalil, A, Suff, N, Thilaganathan, B, Hurrell, A, Cooper, D, Carvalho, JS. Brain abnormalities and neurodevelopmental delay in congenital heart disease: systematic review and meta-analysis. Ultrasound Obstet Gynecol 2014; 43: 1424.
8. Majnemer, A, Limperopoulos, C. Developmental progress of children with congenital heart defects requiring open heart surgery. Semin Pediatr Neurol 1999; 6: 1219.
9. Massaro, AN, El-Dib, M, Glass, P, Aly, H. Factors associated with adverse neurodevelopmental outcomes in infants with congenital heart disease. Brain Dev 2008; 30: 437446.
10. Brosig, C, Mussatto, K, Hoffman, G, et al. Neurodevelopmental outcomes for children with hypoplastic left heart syndrome at the age of 5 years. Pediatr Cardiol 2013; 34: 15971604.
11. Cassidy, AR, White, MT, DeMaso, DR, Newburger, JW, Bellinger, DC. Executive function in children and adolescents with critical cyanotic congenital heart disease. J Int Neuropsychol Soc 2015; 21: 3449.
12. Chock, V, Lee, HC. Neurodevelopmental outcomes for infants born with congenital heart disease. NeoReviews 2014; 15: e344e353.
13. Sananes, R, Manlhiot, C, Kelly, E, et al. Neurodevelopmental outcomes after open heart operations before 3 months of age. Ann Thorac Surg 2012; 93: 15771583.
14. 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: e818e827.
15. Andrews, R, Morgan, JD, Addy, DP, McNeish, AS. Understanding non-attendance in outpatient paediatric clinics. Arch Dis Childhood 1990; 65: 192195.
16. Guzek, LM, Fadel, WF, Golomb, MR. A pilot study of reasons and risk factors for “No-Shows” in a pediatric neurology clinic. J Child Neurol 2015; 30: 12951299.
17. Specht, EM, Powell, KR, Dormo, CA. Factors affecting missed appointment rates for pediatric patients insured by medicaid in a traditional hospital-based resident clinic and hospital-owned practice settings. Clin Pediatr 2004; 43: 749752.
18. Bruni, R, Bahamonde, LG, Gupta, M, Findlay, RD, Bean, X. Long-term follow up of NICU graduates: social variables, not clinical problems, determine drop-out rates and access to health care 1215. Pediatr Res 1998; 43: 208.
19. Patra, K, Greene, M, Perez, B, Silvestri, JM. Neonatal high-risk follow-up clinics: how to improve attendance in very low birth weight infants. J Neonatol Res 2014; 4: 313.
20. Yoon, EY, Davis, MM, Van Cleave, J, Maheshwari, S, Cabana, MD. Factors associated with non-attendance at pediatric subspecialty asthma clinics. J Asthma 2005; 42: 555559.
21. Roberts, G, Howard, K, Spittle, AJ, Brown, NC, Anderson, PJ, Doyle, LW. Rates of early intervention services in very preterm children with developmental disabilities at age 2 years. J Paediatr Child H 2008; 44: 276280.
22. Wernovsky, G. Current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. Cardiol Young 2006; 16 (Suppl 1): 92104.
23. Hunter, LL, Meinzen-Derr, J, Wiley, S, Horvath, CL, Kothari, R, Wexelblatt, S. Influence of the WIC program on loss to follow-up for newborn hearing screening. Pediatrics 2016; 138: 1.
24. Kanji, A, Khoza-Shangase, K, Ballot, D. Hearing screening follow-up return rate in a very low birth weight project: a retrospective record review. South African Journal of Child Health 2010; 4: 95.
25. Loss to Follow-Up in early hearing detection and intervention [Technical Report]. American Speech-Language-Hearing Association. (2008). Retrieved from
26. Boss, EF, Benke, JR, Tunkel, DE, Ishman, SL, Bridges, JF, Kim, JM. Public insurance and timing of polysomnography and surgical care for children with sleep-disordered breathing. JAMA Otolaryngol Head Neck Surg 2015; 141: 106111.
27. Chang, DT, Ko, AB, Murray, GS, Arnold, JE, Megerian, CA. Lack of financial barriers to pediatric cochlear implantation: impact of socioeconomic status on access and outcomes. Arch Otolaryngol Head Neck Surg 2010; 136: 648657.
28. Park, CH, Kogan, MD, Overpeck, MD, Casselbrant, ML. Black-white differences in health care utilization among US children with frequent ear infections. Pediatrics 2002; 109: E84.
29. Skinner, AC, Mayer, ML. Effects of insurance status on children’s access to specialty care: a systematic review of the literature. BMC Health Serv Res 2007; 7: 194.
30. Schultz, AH, Jarvik, GP, Wernovsky, G, et al. Effect of congenital heart disease on neurodevelopmental outcomes within multiple-gestation births. J Thorac Cardiovasc Surg 2005; 130: 15111516.
31. Mussatto, KA, Hoffmann, RG, Hoffman, GM, et al. Risk and prevalence of developmental delay in young children with congenital heart disease. Pediatrics 2014; 133: e570e577.
32. McPherson, ML, Lairson, DR, Smith, EO, Brody, BA, Jefferson, LS. Noncompliance with medical follow-up after pediatric intensive care. Pediatrics 2002; 109: e94.
33. Cameron, E, Heath, G, Redwood, S, et al. Health care professionals’ views of paediatric outpatient non-attendance. Family Practice 2014; 31: 111117.



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