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

Published online by Cambridge University Press:  23 January 2018

Eméfah C. Loccoh ,
Sunkyung Yu ,
Janet Donohue ,
Ray Lowery ,
Jennifer Butcher ,
Sara K. Pasquali ,
Caren S. Goldberg  and
Karen Uzark
Eméfah C. Loccoh
Affiliation:
Pediatric Cardiology, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, United States of America
Sunkyung Yu
Affiliation:
Pediatric Cardiology, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, United States of America
Janet Donohue
Affiliation:
Pediatric Cardiology, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, United States of America
Ray Lowery
Affiliation:
Pediatric Cardiology, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, United States of America
Jennifer Butcher
Affiliation:
Pediatric Psychology, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, United States of America
Sara K. Pasquali
Affiliation:
Pediatric Cardiology, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, United States of America
Caren S. Goldberg
Affiliation:
Pediatric Cardiology, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, United States of America
Karen Uzark*
Affiliation:
Pediatric Cardiology, University of Michigan C.S. Mott Children’s Hospital, Ann Arbor, Michigan, United States of America
*
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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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.

Keywords

CHDdevelopmental delaynon-attendanceneurodevelopmental evaluation
Type
Original Articles
Information
Cardiology in the Young , Volume 28 , Issue 4 , April 2018 , pp. 554 - 560
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Copyright
© Cambridge University Press 2018 

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