Mind Matters in the Cardiac ICU

“Alone we can do so little; together we can do so much.” – Helen Keller

In my 10 years as a cardiac intensivist, I have been amazed at the pace of change in patient volume and complexity, critical care technology, and the appetite for collaboration in pediatric heart disease. I have witnessed the dissolution of siloed care and have been a part of clinical practice change, quality improvement and research, and the creation of interdisciplinary and interinstitutional collaboratives aimed at ensuring lifetime wellness for patients and families living with congenital heart disease (CHD).

In 2012, Bradley Marino and his co-authors published an American Heart Association consensus guideline highlighting the developmental risk profile in CHD. They encouraged heart centers to implement clinical pathways for periodic developmental surveillance, screening, evaluation, and reevaluation throughout childhood, allowing for appropriate therapies and education to enhance later academic, behavioral, psychosocial, and adaptive functioning for high risk CHD patients. Since then, multidisciplinary leaders in cardiology and critical care have created the Cardiac Neurodevelopmental Outcomes Collaborative (CNOC) which has become the authority on best practice for comprehensive neurodevelopmental (ND) care in CHD. The CNOC mission is to optimize ND outcomes and maximize quality of life across the lifespan for infants, children, young adults, and families living with CHD.

As a cardiac intensivist, I refuse to accept the status quo that the expected prolonged hospital length of stay (HLOS) for patients with critical CHD is a non-modifiable variable that contributes to adverse ND outcomes. HLOS becomes modifiable if patients and families receive developmentally appropriate care throughout their hospitalization even in the face of critical illness. This new mindset focused on hospital-based, developmental care has grown from the intersection of numerous opportunities for PCICS and CNOC collaboration. The Cardiac Neuroprotective Network, a CNOC special interest group, has been doing this work for years. Their most recent work has focused on defining the role of hospital-based infant neurobehavioral evaluations, patient centered developmental care practices, and parent bonding. They encourage centers to build critical care unit infrastructure to deliver individualized, developmentally-appropriate care and define objective outcomes for research and quality improvement work to measure the impact of these interventions. Widespread adoption of standardized and comprehensive developmental care during the hospital stay has the potential to challenge the notion that HLOS is not modifiable while promoting a positive impact on long-term ND outcomes.

In 2019, CNOC created a data registry that shares the Arbormetrix platform with other Cardiac Networks United Collaboratives. The registry contains ND testing data on 6,143 infants and school-aged patients with CHD. The shared data platform has the potential to elucidate center-level ND practice variation, examine granular clinical data and define the impact of this variation on ND outcomes across centers. The first CNOC publication to utilize the shared platform with Pediatric Cardiac Critical Care Consortium (PC4) has been submitted for publication. Using this rich data set we determined that a post-surgical hospital-based referral had the largest impact on outpatient ND follow-up in high-risk CHD patients. Upcoming studies will examine patient factors and disparities that affect ND follow-up and outcomes.

Improving ND outcomes in CHD requires interdisciplinary and interinstitutional collaboration.  CNOC currently has 50 member institutions (46 US, 2 Canadian, 2 European) and approximately 1,400 members. CNOC members represent a diverse array of disciplines including RN, APRN, psychologists, neuropsychologists, physicians, speech therapists, physical therapists, and occupational therapists; all dedicated to working together to understand modifiers of ND impairment in patients with CHD and improve ND care delivery. This interdisciplinary model mirrors the PCICS membership.  As we learn more about the impact of critical care practices on ND outcomes, the knowledge sharing and collaborative efforts of CNOC and PCICS will be crucial. Fostering this relationship will be easy, as centers are already doing the collaborative work. Currently, 100% of PCICS executive and subcommittee leaders and the board of directors are practicing at CNOC centers. Importantly, 75% of PCICS institutional member centers are also CNOC centers. The 2023 World Congress of Pediatric Cardiology and Cardiac surgery is an excellent example of this intersection and an upcoming platform to form new relationships for future collaboration. The Neurodevelopment pathway will be a welcome addition for PCICS members.

Cardiac critical care medicine is rapidly changing. As mortality continues to improve across centers, we can broaden the lens through which we see our patients by incorporating ND outcomes into our performance metrics. No longer does research have to focus solely on the aspects of cardiac care that contribute to adverse ND outcomes; we can foster collaboration to determine care pathways and interventions that promote a positive impact of hospital care on long-term ND outcomes. As we solidify our role in ensuring excellent short-term ND care with long-term ND follow-up, we will maximize the quality of life across the lifespan of our CHD patients and families.

References: Twitter – #CNOC, #CNOC2023, @CardiacNeuro, @GlotzbachKristi Instagram; – cnoc_thrive

1. Developmental care pathway for hospitalized infants with CHD: on behalf of the Cardiac Newborn Neuroprotective Network, a Special Interest Group of the Cardiac Neurodevelopmental Collaborative. AJ Lisanti, S.C. Butler, et.al. Cardiol in Young. 2023 Mar 30:1-18.
2. Developmental Care for Hospitalized Infants with Complex Congenital Heart Disease: A scientific advisory from the American Heart Association. AJ Lisanti, et al. J Am Heart Assoc. 2023 Feb 7;12(3).
3. A collaborative learning assessment of developmental care practices for infants in the cardiac intensive care unit. TA Miller, et al.  J Peds. 2020 May;220:93-100.
4. Implementation and modification of developmental care rounds in the cardiac intensive care unit. J Elhoff, et al.  Am J Crit Care. 2022 Nov 1;31(6):494-498.