Name of Program: UPMC Children’s Hospital of Pittsburgh’s (CHP) Cardiac Neurodevelopmental Care Program
Year Program Established: In 2007, CHP’s pediatric heart experts partnered with The Pittsburgh Children’s Institute to form the Pediatric Cardiac Recovery Program (PCRP) to offer referral to outpatient resources that provided holistic care to oversee all aspects of the pediatric congenital heart disease (CHD) patient’s development and help children and families adapt to a new way of life while reaching the CHD patient’s fullest potential. This program has continued to evolve and has undergone several modifications, transitioning care to UPMC’s Neonatal Developmental Follow-up Clinic in 2014 and incorporating the inpatient neurodevelopmental (ND) program in 2016. In 2021, the Cardiac Neurodevelopmental Care Program was formalized, providing comprehensive and multidisciplinary longitudinal neurodevelopmental care services to patients and families at UPMC Children’s Hospital of Pittsburgh.
Program Leader: Lauren Lorenzi Quigley PhD, Director of Cardiac Neurodevelopmental Care Program
Key Staff and Specialties:
Susan Bowen PhD, Associate Director
Tracy Baust BA CCRC, Program Coordinator
Critical Care Medicine: Justin Yeh MD; Elizabeth Herrup MD; Jiuann-Huey Ivy Lin MD PhD; Joan Sanchez-de-Toledo MD PhD
Cardiology: Jacqueline Kreutzer MD; Jacqueline Weinberg MD; Jennifer Johnson MD
Psychology: Lauren Lorenzi Quigley PhD
Neuropsychology: Susan Bowen PhD
Radiology: Ashok Panigrahy MD
Psychiatry: Heather Joseph DO
Nursing: Sharon Mazzocco BSN RN MAS CPN; Jennifer Rosi BSN RN CPN PA-CSN
Physical and Occupational Therapy: Elizabeth R. Betancourt DPT; Jamie Scheller OTR/L
Research Coordinators: Tracy Baust BA CCRC; Nancy Beluk RT(R); Jennifer Frye BA CST; Tasha Hwostow AS
Child Life: Laura Nolen MS CCLS and Daniela Ortega MS CCLS
Age Range of Patients Served: Our program serves patients across the lifespan, offering consultative neurodevelopmental/psychosocial support visits to mothers receiving fetal diagnoses of CHD prenatally, followed by inpatient neurodevelopmental care and familial support, outpatient early childhood neurodevelopmental services, and neuropsychological and behavioral health supportive services through school age and into young adulthood.
Description of Inpatient Program(s): Our Inpatient Cardiac ND Program is centered around weekly, multidisciplinary neurodevelopmental rounds for all infants (0-12 months) admitted to the Cardiac Intensive Care Unit and Acute Care Ward. Weekly bedside rounds are led by our psychologist, Lauren Lorenzi Quigley PhD, and include participation from child life specialists, physical and occupational therapists, nurses, physicians, and research coordinators. The aim of ND rounds is to involve both the bedside nurse and family in discussion of the patient’s developmental progress, obstacles, and appropriate developmental care interventions. Weekly rounds also aim to assure access to appropriate inpatient therapeutic services for all children under the age of 5 and admitted to CHP’s Heart Center.
Our program also aims to offer discharge neurodevelopmental assessments to all infants admitted greater than 7 days, surgically or greater than 14 days, medically while assuring referral to CHP’s Neonatal Developmental Follow-up Clinic, led by our Behavioral Health Division, for continued, longitudinal developmental screening and follow-up care. Finally, our inpatient neurodevelopmental program guides referrals to both early intervention and other therapeutic services following hospital discharge.
Description of Outpatient Program(s): Patients with CHD are seen in early childhood through the CHP Neonatal Developmental Follow-up Clinic for comprehensive outpatient neurodevelopmental monitoring through the first 2-3 years of life. This clinic is staffed by a multidisciplinary team including our HVI psychologist along with physical therapy. When possible, these visits are scheduled in coordination with our patient’s cardiology follow up. Following graduation from this clinic, patients transition to the CHP Neuropsychology service where they are followed by neuropsychologist Susan Bowen, PhD for continued neurodevelopmental monitoring and support through school age and beyond.
Description of research or QI projects in cardiac neurodevelopment – undergoing or accomplished: The team is also active in a cardiac neurodevelopmental centered research and quality improvement working group, led by Dr. Ashok Panigrahy, where numerous multidisciplinary investigators collaborate to further our understanding of the etiology and risk factors associated with neurodevelopmental disability, aim to develop and improve individualized therapies; ultimately, assuring optimal developmental outcomes for children with CHD.
With the support of The Beckwith Institute, three quality projects have focused on increasing staff and family education, as well as developmental resource availability to 1) Implement a Family-Centered Inpatient Neurodevelopmental Program in the Pediatric Cardiac Intensive Care Unit and Acute Care Ward; 2) Integrate a Standardized Early Mobility Protocol in the Pediatric Cardiac Intensive Care Unit; and 3) Improve the Frequency and Duration of Use of Mother’s Own Milk (MOM) for Neonates and Infants Hospitalized with Congenital Heart Disease. Success of these QI projects resulted in increased staff awareness and perception of developmental care practices, assured early access and increased utilization of inpatient therapeutic services, and increased active participation of both clinical staff and family in developmental care of hospitalized infants with CHD. We continue to evaluate how this improved multidisciplinary developmental care culture impacts the long-term functional and developmental outcomes for our CHD patients.
Ongoing projects continue to examine how environmental factors such as light and sound affect patient care and development in the CICU setting. Neurodevelopmental-centered research projects are led by numerous investigators in the Department of Radiology (Ashok Panigrahy MD); the Department of Critical Care Medicine (Jiuann-Huey Ivy Lin MD PhD, Joan Sanchez-de-Toledo MD PhD), Department of Psychiatry (Heather Joseph DO), Behavioral Sciences Division (Lauren Lorenzi Quigley PhD), and Department of Developmental Biology (Cecilia Lo PhD). Current projects include 1) Understanding the in vivo neuroimaging correlates of brain injury in CHD neonates, using advanced magnetic resonance brain imaging; 2) Identifying neurodegeneration markers that can help prognosticate neurodevelopmental outcomes for CHD patients undergoing neonatal cardiothoracic surgery; 3) Assessing delirium risk factors that impact neurobehavioral outcomes in neonates and infants with CHD; and 4) Examining the possible developmental etiology and genetic underpinnings for poor neurodevelopment outcomes in CHD patients. Collectively and individually, all these projects ultimately aim to provide earlier diagnosis and identification of risk factors that contribute to neurodevelopment disabilities, with the hope that their findings may lead to earlier, more individualized therapies and assure optimal developmental outcomes for children with CHD.