Name of Program: Cardiac Neurodevelopment Program (CNP)
Year Program Established: 2016
Program Leader: Kenneth Knecht, MD
Key Staff and Specialties:
- Kenneth Knecht, MD – Pediatric Cardiologist
- Tara Johnson, MD – Developmental Neurologist
- Shruti Tewar, MBBS MPH – Developmental-Behavioral Pediatrician
- Brooke Yancey-Ward, Psy. D. – Pediatric Psychologist
- Elizabeth Pulliam, Psy.D. – Pediatric Psychologist
- Melissa Cowley, OTR/L – Occupational Therapist
- Elizabeth Huett, PT, DPT – Physical Therapist
- Brandi Hurtado, M.S., CCC-SLP – Speech-Language Pathologist
- Holly Pruss, Au.D., CCC-A – Audiologist
- Brianna Shannon, CCLS – Child Life Specialist, CVICU Developmental Support Team
- Janie Kane, MS, APRN, PCNS-BC – Clinical Nurse Specialist, CVICU Developmental Support Team
- Heather Raiees-Dana, BSN, RN, CPN – Program Coordinator
- McKinsey Jansen, BSN, RN, CCRN – Specialty Nurse
Age Range of Patients Served: birth – 21 years
Description of Inpatient Program(s): Our CVICU Developmental Support Team consists of Child Life, Occupational Therapy, Psychology, and Nursing. The team has multidisciplinary developmental rounds every other week. Updated developmental plans, therapy goals, and developmentally supportive activities modified for the CVICU setting are posted at bedside to encourage integration of developmental care into every day care. Our team has also worked with the surgeons to allow tummy time to start earlier and developed guidelines for safe holding in the CVICU.
A best practice advisory for a Cardiac Neurodevelopment Program consult is triggered when patients transfer from the ICU to the intermediate service. Our team meets with families inpatient and patients are scheduled for their initial ND evaluation prior to discharge. Our therapy team works with our case management team to ensure referrals to Early Intervention services are placed prior to discharge for high risk patients. They also provide home programming for parents to work on until outpatient services are set up.
We ensure our inpatient staff is educated on Cardiac Neurodevelopment through education modules, new hire orientation, informal educational in-services, and a monthly “Developmental Digest” that includes information about Cardiac Neurodevelopment, updates in research, and tips for including developmental care in every day care.
Description of Outpatient Program(s): Patients are followed every 6 months until age 3 by one of our developmental physicians. Our physicians also help manage ADHD, Anxiety, etc. for our heart patients through this program.
Our psychologists complete cognitive testing at 18 months, 3 years, and prior to kindergarten. They provide additional testing in school age children as needed.
Our therapy team is available for supplemental testing or co-testing.
A member of our Cardiac Neurodevelopmental Team is a part of our multidisciplinary Interstage and Fontan clinics. Neurodevelopmental screenings are embedded into these clinics. We are also available to meeting with high-risk families during fetal appointments.
School age children are screened for concerns about learning, development, and behavior at each Cardiology appointment and referred to our program as needed.
We are the only children’s hospital in the state and serve patients who live long distances from the hospital. Our coordinator works closely with families, local primary care providers, schools, and therapy providers to ensure our patients are getting the services they need close to home.
Description of research or QI projects in cardiac neurodevelopment – undergoing or accomplished:
- Neurodevelopmental information and screenings are included in a database for patients seen in our Fontan Clinic and we are interested in utilizing this information to improve our care of single ventricle patients.
- Our team actively participates in NPCQIC.
- Tara Johnson is heavily involved with the Arkansas Children’s Research Institute and leads multidisciplinary teams in innovative research projects related to Cardiac Neurodevelopment including:
- Implementation of Prechtl’s General Movement Assessment and Capute Scales in children with congenital heart disease
- We use a unique combination of developmental screening tools that quantify and assess language, cognitive, and motor development from birth to 36 months. We hope to improve the disciplinary care continuum of patients with congenital heart disease who are at risk for neurodevelopmental disabilities.
- Predictors of Longitudinal Neurodevelopmental Outcomes in Children with Single Ventricle Physiology along the Cardiac Transplant Pathway
- Our multidisciplinary research team (neurodevelopmental disabilities, pediatric cardiology, and pediatric cardiothoracic surgery) expects to identify modifiable risk factors that are associated with neurodevelopmental disabilities in children with single ventricle physiology who undergo either palliation or pediatric heart transplant. Identification of these risk factors with our standardized protocol will ultimately lead to non-invasive interventions to improve long-term neurodevelopmental outcomes in children with single ventricle physiology.
- Our Cardiology department as a whole is interested in neurodevelopmental outcomes in children with CHD. We are exploring or in the process of quality improvement and research projects across several areas including improving gross motor outcomes, improving developmental care in the CVICU, patient/parent education, and community outreach.
- Implementation of Prechtl’s General Movement Assessment and Capute Scales in children with congenital heart disease
Unique features and strengths of this program:
- Multidisciplinary group with several members that follow inpatient as well as outpatient for continuity of care
- Located in the Cardiology Clinic, with coordinator’s office in the Cardiology Clinic as well for easy consults, screenings, and coordination of appointments.
- Integration of neurodevelopmental screening and care into follow up clinics for high-risk patients.
- Able to assess for and provide medication management for several diagnoses
- Partnerships with inpatient team and community outreach coordinator to educate families, staff, and community on Cardiac Neurodevelopment.