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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)...

Abstract

Background

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.

Methods

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.

Results

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).

Conclusions

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.

Copyright

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: karenu@med.umich.edu

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