Developmental care pathway for hospitalised infants with CHD: on behalf of the Cardiac Newborn Neuroprotective Network, a Special Interest Group of the Cardiac Neurodevelopmental Outcome Collaborative

Amy J Lisanti; Dorothy J Vittner; Jennifer Peterson; Andrew H Van Bergen; Thomas A Miller; Erin E Gordon; Karli A Negrin; Hema Desai; Suzie Willette; Melissa B Jones; Sherrill D Caprarola; Anna J Jones; Stephanie M Helman; Jodi Smith; Corinne M Anton; Laurel M Bear; Lauren Malik; Sarah K Russell; Dana J Mieczkowski; Bridy O Hamilton; Meghan McCoy; Yvette Feldman; Michelle Steltzer; Melanie L Savoca; Diane L Spatz; Samantha C Butler

doi:10.1017/S1047951123000525

Developmental care pathway for hospitalised infants with CHD: on behalf of the Cardiac Newborn Neuroprotective Network, a Special Interest Group of the Cardiac Neurodevelopmental Outcome Collaborative

Cardiol Young. 2023 Dec;33(12):2521-2538. doi: 10.1017/S1047951123000525. Epub 2023 Mar 30.

Authors

Amy J Lisanti^{1

2}, Dorothy J Vittner³, Jennifer Peterson⁴, Andrew H Van Bergen⁵, Thomas A Miller⁶, Erin E Gordon⁷, Karli A Negrin⁸, Hema Desai⁹, Suzie Willette¹⁰, Melissa B Jones¹¹, Sherrill D Caprarola¹², Anna J Jones¹³, Stephanie M Helman¹⁴, Jodi Smith¹⁵, Corinne M Anton^{16

17}, Laurel M Bear¹⁸, Lauren Malik¹⁹, Sarah K Russell⁸, Dana J Mieczkowski⁸, Bridy O Hamilton⁸, Meghan McCoy²⁰, Yvette Feldman²¹, Michelle Steltzer²², Melanie L Savoca²³, Diane L Spatz²⁴, Samantha C Butler²⁵

Affiliations

¹ Department of Family and Community Health, University of Pennsylvania School of Nursing, Philadelphia, PA, USA.
² Research Institute, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
³ Egan School of Nursing and Health Studies, Fairfield University Fairfield, CT, USA, Connecticut Children's, Hartford, CT, USA.
⁴ The Johns Hopkins University School of Nursing, Baltimore, MD, USA.
⁵ Advocate Children's Heart Institute, Advocate Children's Hospital, Oak Lawn, IL, USA.
⁶ Department of Pediatrics, Maine Medical Center, Portland, ME, USA.
⁷ Inpatient Cardiac Neurodevelopment Program, Division of Critical Care Medicine, University of Texas Southwestern Medical Center, Dallas, TX, USA.
⁸ Department of Therapeutic and Rehabilitative Services, Nemours Children Hospital, Wilmington, DE, USA.
⁹ Rehabilitation Services, CHOC Children's Hospital, Orange, CA, USA.
¹⁰ Department of Speech-Language Pathology, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
¹¹ Cardiac Critical Care, Children's National Hospital, Washington, DC, USA.
¹² Heart Institute, Children's Hospital Colorado, University of Colorado, Aurora, CO, USA.
¹³ Office of Advanced Practice Providers, UT Southwestern Medical Center, Dallas, TX, USA, Heart Center, Children's Health, Dallas, TX, USA.
¹⁴ Department of Acute and Tertiary Care, University of Pittsburgh School of Nursing, Pittsburgh, PA, USA.
¹⁵ Parent Representative, The Mended Hearts, Inc., Program Director, Richmond, VA, USA.
¹⁶ Department of Psychology and Psychiatry, University of Texas Southwestern Medical Center, Dallas, TX, USA.
¹⁷ Department of Cardiology, Children's Health, Dallas, TX, USA.
¹⁸ Department of Pediatrics, Medical College of Wisconsin, Children's Wisconsin, Milwaukee, WI, USA.
¹⁹ Department of Acute Care Therapy Services, Primary Children's Hospital, Salt Lake City, UT, USA.
²⁰ Pediatric and Congenital Heart Center, Duke University Hospital, Durham, NC, USA.
²¹ Nursing & Patient Care Center of Excellence, St. Luke's Health System, Boise, ID, USA.
²² Single Ventricle Center of Excellence, Ann & Robert H. Lurie Children's Hospital, Chicago, IL, USA.
²³ Department of Clinical Nutrition, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
²⁴ Department of Family & Community Health, University of Pennsylvania School of Nursing, The Center for Pediatric Nursing Research and Evidence Based Practice, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
²⁵ Department of Psychiatry (Psychology), Boston Children's Hospital, Harvard Medical School, Boston, MA, USA.

PMID: 36994672
PMCID: PMC10544686 (available on 2024-06-01)
DOI: 10.1017/S1047951123000525

Abstract

Infants and children born with CHD are at significant risk for neurodevelopmental delays and abnormalities. Individualised developmental care is widely recognised as best practice to support early neurodevelopment for medically fragile infants born premature or requiring surgical intervention after birth. However, wide variability in clinical practice is consistently demonstrated in units caring for infants with CHD. The Cardiac Newborn Neuroprotective Network, a Special Interest Group of the Cardiac Neurodevelopmental Outcome Collaborative, formed a working group of experts to create an evidence-based developmental care pathway to guide clinical practice in hospital settings caring for infants with CHD. The clinical pathway, "Developmental Care Pathway for Hospitalized Infants with Congenital Heart Disease," includes recommendations for standardised developmental assessment, parent mental health screening, and the implementation of a daily developmental care bundle, which incorporates individualised assessments and interventions tailored to meet the needs of this unique infant population and their families. Hospitals caring for infants with CHD are encouraged to adopt this developmental care pathway and track metrics and outcomes using a quality improvement framework.

Keywords: CHD; developmental care; family-centered care; infant; neurodevelopment; parent.

MeSH terms

Child
Critical Pathways*
Heart Defects, Congenital* / complications
Heart Defects, Congenital* / diagnosis
Heart Defects, Congenital* / therapy
Humans
Infant
Infant, Newborn
Public Opinion

Grants and funding

F31 NR019725/NR/NINR NIH HHS/United States