Name of Program: Children’s Hospital Colorado Cardiac Neurodevelopmental Follow-Up Program
Year Program Established: 2016
Program Leaders: Kelly Wolfe PhD & Sarah Kelly PsyD
Key Staff and Specialties:
Brenda Abbey SLP – Speech/Language Pathologist
Cheryl Anselmo SLP – Speech/Language Pathologist
Erin Austin MA – Educational Specialist
Sanja Batz OT – Occupational Therapist
Alison Bryan OT – Occupational Therapist
Jesse Davidson MD – Cardiac Intensivist
Alison DuMond CPNP – Cardiac Nurse Practitioner
Laura Evers RN – Cardiac ICU Nurse
D. Dunbar Ivy MD – Director, Heart Institute
Sarah Kelly PsyD – Pediatric Psychologist and Clinical Director, Heart Institute Wellness Program
Johanna Kilby PT – Physical Therapist
Emily Maloney PT – Physical Therapist
Kelly Wolfe PhD ABPP-CN – Pediatric Neuropsychologist and Director, Cardiac Neurodevelopmental Follow-Up Program
Age Range of Patients Served: 0 – 25 years old
Description of Inpatient Program(s): CINCO stands for Cardiac Inpatient Neurodevelopmental Care Optimization and is a comprehensive program at CHCO to address multiple aspects of the inpatient environment that may impact neurodevelopment and quality of life from infancy to adulthood.
Specifically, CINCO includes:
1) A medical order panel that reduces interruptions to sleep and other developmental activities, bundles medications, and promotes skin-to-skin care for infants
2) Bedside neurodevelopmental plans with “developmental homework” and age-appropriate Developmental Kits to promote stimulation and learning
3) Parent mental health psychoeducation and intervention
4) Cardiac-specific volunteers who supplement parent presence at bedside for stimulation and socialization.
Description of Outpatient Program(s): For children age 0-2, neurodevelopmental assessments are completed at CNOC-recommended ages in a multidisciplinary clinic, including speech/language pathology, occupational and physical therapies, pediatric psychology, and neuropsychology. Therapies and interventions are provided outpatient and via telehealth, as well as offering consultation and referral to early intervention.
For youth age 3 to young adult, comprehensive neuropsychological evaluations are completed at routine intervals by the neuropsychologist. Speech/language, occupational, and physical therapies as well as psychological, behavioral, and school consultation and intervention are provided.
Description of research or QI projects in cardiac neurodevelopment – undergoing or accomplished:
• We have a prospective clinical database of individuals with Fontan circulation, including multi-specialty medical/surgical, neurodevelopmental, and quality of life data. We use this for research to help us understand how these areas interact with and affect long-term outcomes in the Fontan population.
• Ongoing quality improvement projects include evaluating implementation of the CINCO program and parent, patient and provider satisfaction with multidisciplinary care for individuals with Fontan circulation.
• Examining predictors of neuropsychological functioning and medication adherence in pediatric heart transplant recipients, for those with or without premorbid congenital heart disease.
• Involvement in NPC-QIC including Gross Motor Project and the Neurodevelopmental Learning Lab
Unique features and strengths of this program: Strong interdisciplinary collaboration across inpatient and outpatient clinical settings as well as within research projects; annual patient-centered education and connection-making events such as the Single Ventricle Family Summit; emphasis on both qualitative and quantitative analysis of neurodevelopmental outcomes and patient experience; multi-site collaborations.