Factors Associated With Attendance for Cardiac Neurodevelopmental Evaluation

Neurodevelopmental evaluation of toddlers with complex congenital heart disease is recommended but reported frequency is low. Data on barriers to attending neurodevelopmental follow-up are limited. This study aims to estimate the attendance rate for a toddler neurodevelopmental evaluation in a conte...

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Published inPediatrics (Evanston) Vol. 152; no. 3; p. 1
Main Authors Ortinau, Cynthia M, Wypij, David, Ilardi, Dawn, Rofeberg, Valerie, Miller, Thomas A, Donohue, Janet, Reichle, Garrett, Seed, Mike, Elhoff, Justin, Alexander, Nneka, Allen, Kiona, Anton, Corinne, Bear, Laurel, Boucher, Gina, Bragg, Jennifer, Butcher, Jennifer, Chen, Victoria, Glotzbach, Kristi, Hampton, Lyla, Lee, Caroline K, Ly, Linh G, Marino, Bradley S, Martinez-Fernandez, Yadira, Monteiro, Sonia, Ortega, Christina, Peyvandi, Shabnam, Raiees-Dana, Heather, Rollins, Caitlin K, Sadhwani, Anjali, Sananes, Renee, Sanz, Jacqueline H, Schultz, Amy H, Sood, Erica, Tan, Alexander, Willen, Elizabeth, Wolfe, Kelly R, Goldberg, Caren S
Format Journal Article
LanguageEnglish
Published United States American Academy of Pediatrics 01.09.2023
Subjects
Cardiopulmonary Bypass
Cardiovascular disease
Child
Congenital diseases
Critical Care
Down Syndrome
Female
Heart
Heart diseases
Heart rate
Humans
Patients
Pediatrics
Pregnancy
Regression analysis
Retrospective Studies
Thoracic surgery
Thorax
Trisomy
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Summary:Neurodevelopmental evaluation of toddlers with complex congenital heart disease is recommended but reported frequency is low. Data on barriers to attending neurodevelopmental follow-up are limited. This study aims to estimate the attendance rate for a toddler neurodevelopmental evaluation in a contemporary multicenter cohort and to assess patient and center level factors associated with attending this evaluation. This is a retrospective cohort study of children born between September 2017 and September 2018 who underwent cardiopulmonary bypass in their first year of life at a center contributing data to the Cardiac Neurodevelopmental Outcome Collaborative and Pediatric Cardiac Critical Care Consortium clinical registries. The primary outcome was attendance for a neurodevelopmental evaluation between 11 and 30 months of age. Sociodemographic and medical characteristics and center factors specific to neurodevelopmental program design were considered as predictors for attendance. Among 2385 patients eligible from 16 cardiac centers, the attendance rate was 29.0% (692 of 2385), with a range of 7.8% to 54.3% across individual centers. In multivariable logistic regression models, hospital-initiated (versus family-initiated) scheduling for neurodevelopmental evaluation had the largest odds ratio in predicting attendance (odds ratio = 4.24, 95% confidence interval, 2.74-6.55). Other predictors of attendance included antenatal diagnosis, absence of Trisomy 21, higher Society of Thoracic Surgeons-European Association for Cardio-Thoracic Surgery mortality category, longer postoperative length of stay, private insurance, and residing a shorter distance from the hospital. Attendance rates reflect some improvement but remain low. Changes to program infrastructure and design and minimizing barriers affecting access to care are essential components for improving neurodevelopmental care and outcomes for children with congenital heart disease.
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Dawn Ilardi, Tom Miller, and Mike Seed helped conceptualize the study, designed the data collection instrument, contributed to data collection, contributed to figures and tables, and critically reviewed and revised the manuscript.
Contributed equally as co-first authors
Cynthia Ortinau and Caren Goldberg conceptualized and designed the manuscript, designed the data collection instrument, coordinated and supervised data collection, drafted the initial manuscript, contributed to figures and tables, and critically reviewed and revised the manuscript.
Janet Donohue and Garrett Reichle designed the data collection instrument, were responsible for data management, and critically reviewed and revised the manuscript.
Contributors’ Statement Page
David Wypij and Valerie Rofeberg conceptualized and designed the manuscript, designed the data collection instrument, carried out the statistical analyses, drafted the initial manuscript, drafted the initial figures and tables, and critically reviewed and revised the manuscript.
Nneka Alexander, Kiona Allen, Corinne Anton, Laurel Bear, Gina Boucher, Jennifer Bragg, Jennifer Butcher, Victoria Chen, Justin Elhoff, Kristi Glotzbach, Lyla Hampton, Caroline Lee, Linh Ly, Bradley Marino, Yadira Martinez-Fernandez, Sonia Monteiro, Christina Ortega, Shabnam Peyvandi, Heather Raiees-Dana, Caitlin Rollins, Anjali Sadhwani, Renee Sananes, Jacqueline Sanz, Amy Schultz, Erica Sood, Alexander Tan, Elizabeth Willen, and Kelly Wolfe contributed to study design and data collection and critically reviewed and revised the manuscript.
All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
ISSN:0031-4005
1098-4275
1098-4275
DOI:10.1542/peds.2022-060995