Factors Associated With Attendance for Cardiac Neurodevelopmental Evaluation

Cynthia M. Ortinau; David Wypij; Dawn Ilardi; Valerie Rofeberg; Thomas A. Miller; Janet Donohue; Garrett Reichle; Mike Seed; Justin Elhoff; Nneka Alexander; Kiona Allen; Corinne Anton; Laurel Bear; Gina Boucher; Jennifer Bragg; Jennifer Butcher; Victoria Chen; Kristi Glotzbach; Lyla Hampton; Caroline K. Lee; Linh G. Ly; Bradley S. Marino; Yadira Martinez-Fernandez; Sonia Monteiro; Christina Ortega; Shabnam Peyvandi; Heather Raiees-Dana; Caitlin K. Rollins; Anjali Sadhwani; Renee Sananes; Jacqueline H. Sanz; Amy H. Schultz; Erica Sood; Alexander Tan; Elizabeth Willen; Kelly R. Wolfe; Caren S. Goldberg

doi:10.1542/peds.2022-060995

Factors Associated With Attendance for Cardiac Neurodevelopmental Evaluation

Cynthia M. Ortinau, David Wypij, Dawn Ilardi, Valerie Rofeberg, Thomas A. Miller, Janet Donohue, Garrett Reichle, Mike Seed, Justin Elhoff, Nneka Alexander, Kiona Allen, Corinne Anton, Laurel Bear, Gina Boucher, Jennifer Bragg, Jennifer Butcher, Victoria Chen, Kristi Glotzbach, Lyla Hampton, Caroline K. LeeLinh G. Ly, Bradley S. Marino, Yadira Martinez-Fernandez, Sonia Monteiro, Christina Ortega, Shabnam Peyvandi, Heather Raiees-Dana, Caitlin K. Rollins, Anjali Sadhwani, Renee Sananes, Jacqueline H. Sanz, Amy H. Schultz, Erica Sood, Alexander Tan, Elizabeth Willen, Kelly R. Wolfe, Caren S. Goldberg

Research output: Contribution to journal › Article › peer-review

3 Scopus citations

Abstract

BACKGROUND AND OBJECTIVES: 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. METHODS: 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. RESULTS: 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 5 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. CONCLUSIONS: 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.

Original language	English (US)
Article number	e2022060995
Journal	Pediatrics
Volume	152
Issue number	3
DOIs	https://doi.org/10.1542/peds.2022-060995
State	Published - Sep 1 2023

ASJC Scopus subject areas

Pediatrics, Perinatology, and Child Health

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10.1542/peds.2022-060995

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Ortinau, C. M., Wypij, D., Ilardi, D., Rofeberg, V., Miller, T. A., Donohue, J., Reichle, G., Seed, M., Elhoff, J., Alexander, N., Allen, K., Anton, C., Bear, L., Boucher, G., Bragg, J., Butcher, J., Chen, V., Glotzbach, K., Hampton, L., ... Goldberg, C. S. (2023). Factors Associated With Attendance for Cardiac Neurodevelopmental Evaluation. Pediatrics, 152(3), Article e2022060995. https://doi.org/10.1542/peds.2022-060995

Ortinau, CM, Wypij, D, Ilardi, D, Rofeberg, V, Miller, TA, Donohue, J, Reichle, G, Seed, M, Elhoff, J, Alexander, N, Allen, K, Anton, C, Bear, L, Boucher, G, Bragg, J, Butcher, J, Chen, V, Glotzbach, K, Hampton, L, Lee, CK, Ly, LG, Marino, BS, Martinez-Fernandez, Y, Monteiro, S, Ortega, C, Peyvandi, S, Raiees-Dana, H, Rollins, CK, Sadhwani, A, Sananes, R, Sanz, JH, Schultz, AH, Sood, E, Tan, A, Willen, E, Wolfe, KR & Goldberg, CS 2023, 'Factors Associated With Attendance for Cardiac Neurodevelopmental Evaluation', Pediatrics, vol. 152, no. 3, e2022060995. https://doi.org/10.1542/peds.2022-060995

@article{09c1c017012f4b1bac3a001dc9e09157,

title = "Factors Associated With Attendance for Cardiac Neurodevelopmental Evaluation",

abstract = "BACKGROUND AND OBJECTIVES: 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. METHODS: 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. RESULTS: 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 5 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. CONCLUSIONS: 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.",

author = "Ortinau, {Cynthia M.} and David Wypij and Dawn Ilardi and Valerie Rofeberg and Miller, {Thomas A.} and Janet Donohue and Garrett Reichle and Mike Seed and Justin Elhoff and Nneka Alexander and Kiona Allen and Corinne Anton and Laurel Bear and Gina Boucher and Jennifer Bragg and Jennifer Butcher and Victoria Chen and Kristi Glotzbach and Lyla Hampton and Lee, {Caroline K.} and Ly, {Linh G.} and Marino, {Bradley S.} and Yadira Martinez-Fernandez and Sonia Monteiro and Christina Ortega and Shabnam Peyvandi and Heather Raiees-Dana and Rollins, {Caitlin K.} and Anjali Sadhwani and Renee Sananes and Sanz, {Jacqueline H.} and Schultz, {Amy H.} and Erica Sood and Alexander Tan and Elizabeth Willen and Wolfe, {Kelly R.} and Goldberg, {Caren S.}",

note = "Publisher Copyright: Copyright {\textcopyright} 2023 by the American Academy of Pediatrics.",

year = "2023",

month = sep,

day = "1",

doi = "10.1542/peds.2022-060995",

language = "English (US)",

volume = "152",

journal = "Pediatrics",

issn = "0031-4005",

publisher = "American Academy of Pediatrics",

number = "3",

}

TY - JOUR

T1 - Factors Associated With Attendance for Cardiac Neurodevelopmental Evaluation

AU - Ortinau, Cynthia M.

AU - Wypij, David

AU - Ilardi, Dawn

AU - Rofeberg, Valerie

AU - Miller, Thomas A.

AU - Donohue, Janet

AU - Reichle, Garrett

AU - Seed, Mike

AU - Elhoff, Justin

AU - Alexander, Nneka

AU - Allen, Kiona

AU - Anton, Corinne

AU - Bear, Laurel

AU - Boucher, Gina

AU - Bragg, Jennifer

AU - Butcher, Jennifer

AU - Chen, Victoria

AU - Glotzbach, Kristi

AU - Hampton, Lyla

AU - Lee, Caroline K.

AU - Ly, Linh G.

AU - Marino, Bradley S.

AU - Martinez-Fernandez, Yadira

AU - Monteiro, Sonia

AU - Ortega, Christina

AU - Peyvandi, Shabnam

AU - Raiees-Dana, Heather

AU - Rollins, Caitlin K.

AU - Sadhwani, Anjali

AU - Sananes, Renee

AU - Sanz, Jacqueline H.

AU - Schultz, Amy H.

AU - Sood, Erica

AU - Tan, Alexander

AU - Willen, Elizabeth

AU - Wolfe, Kelly R.

AU - Goldberg, Caren S.

PY - 2023/9/1

Y1 - 2023/9/1

N2 - BACKGROUND AND OBJECTIVES: 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. METHODS: 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. RESULTS: 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 5 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. CONCLUSIONS: 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.

AB - BACKGROUND AND OBJECTIVES: 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. METHODS: 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. RESULTS: 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 5 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. CONCLUSIONS: 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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U2 - 10.1542/peds.2022-060995

DO - 10.1542/peds.2022-060995

M3 - Article

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AN - SCOPUS:85169503710

SN - 0031-4005

VL - 152

JO - Pediatrics

JF - Pediatrics

IS - 3

M1 - e2022060995

ER -

Factors Associated With Attendance for Cardiac Neurodevelopmental Evaluation

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