Our Work

Phase I

The initial NPC-QIC phase focused on improving outcomes for infants with hypoplastic left heart syndrome during the interstage (between discharge from the initial open heart surgery and admission for a bi-directional Glenn procedure). Phase I has been transformational for the field, both because of the improvements accomplished to date and because of the development of parent, clinician and scientist community to broadly disseminate successful improvement strategies. To date, our patients have a 95% chance of surviving the interstage period, 77% of whom have satisfactory growth during the interstage period.

Most importantly, data from the registry continues to enable us to document a significant reduction in interstage mortality for infants cared for by teams participating in the collaborative.  Cumulative aggregate interstage mortality decreased from 9.5% to 5.1%, a relative reduction of 46%. Performance on key outcome measures also improved and for the first time NPC-QIC demonstrated significant reduction in the number of infants experiencing interstage growth failure. Cumulative aggregate  growth failure centerline has been reduced from 18.6% to 13.3%, a relative reduction of 28.4%. There has also been a significant reduction in the number of infants admitted during the interstage for major medical problems.

The hard work of the now 60 centers has resulted in a wealth of knowledge about the best way to care for these complex infants and to achieve better outcomes. An Infographic summarizes the outcomes and collaborative’s success which is updated and published quarterly on this website. To synthesize the identified best practices, NPC-QIC created the Interstage Change Package to assist teams in improving their care and outcomes.

Phase II

In August 2016, Phase II launched, expanding the scope of NPC-QIC improvement and research efforts from the “interstage” period (between discharge from the initial open-heart surgery and admission for a bi-directional Glenn procedure) to the interval between diagnosis and celebration of the first birthday for HLHS patients.

The aim of Phase II is to improve outcomes between diagnosis and first birthday. NPC-QIC domain areas are comprised of the following learning structures: Fetal Perinatal, Surgical & ICU, Interstage, Neurodevelopmental, Nutrition and Growth, Transparency, Patient and Family Support.

Learning Labs| Learning Labs are working groups comprised of subject matter expert representatives from NPC-QIC member care centers, leaders and NPC-QIC quality improvement experts. Learning Labs provide care centers with opportunities for quality improvement work and collaboration across Care Centers. The structure provides quality improvement coaching to promote testing in focused group settings. Each Learning Lab has a Key Driver Diagram to organize its improvement efforts. All labs are co-led by clinicians and parents.

Fetal and Perinatal Learning Lab |
David Brown, MD, Jay Pruetz, MD, David Schidlow, MD, Terra LaFranchi, NP and parent Amy Bennett. Find out more about the Lab here.

Surgical & ICU Learning Lab |
Jim Hammel, MD, and Peter Manning, MD, Rozanne Kirsch, MD, and Gail Wright, MD, and parents Caleb Lihn and Travis Lewis. Find out more about the Lab here.

Neurodevelopmental Learning Lab |
Julia Anixt, MD, and parent Jennie Briend. Find out more about the Lab here.

Family CaRes Learning Lab |
Erica Sood, PhD, Cheryl Brosig Soto, PhD, Jenna Tanem, APN, and parents Stacey Lihn and Trent Neely. Find out more about the Lab here.

Nutrition and Growth Learning Lab |
Megan Horsley, RD, Linda Lambert, CFNP, and parent Lacie Patterson. Find out more about the Lab here.


Organizational Structure

Our structure formally recognizes leaders from the NPC-QIC community and provides an efficient, effective structure for management. The Executive Leadership Team is accountable for the effective functioning of the collaborative, strategic planning, financial and operational success, delivery of its products and services, and customer satisfaction.

The Executive Leadership Team members are

Dr. Jeff Anderson (Cardiology Chair)
Dr. David Brown (Cardiology Co-Chair)
Dr. Carole Lannon (Collaborative Science Lead) and
Ms. Stacey Lihn (Parent Lead)

The Stakeholder Advisory Committee meets quarterly to provide feedback and advice to the Executive Leadership Team, ensuring that collaborative’s goals, strategies, and activities support the overall needs of patients, parents and participating care centers. The broad membership aims to be representative of the diverse collaborative participants and stakeholders.


2016 National Recognition of NPC-QIC

NPC-QIC continues to receive national attention. Recognition has been attained from healthcare leaders including the Institute for Healthcare Improvement (IHI), a leading innovator in health and health care improvement worldwide, as well as the American College of Cardiology (ACC), a nonprofit medical association active in the formulation of health policy and supporter of cardiovascular research, and the American Board of Pediatrics.

  • American Board of Pediatrics: 2016 Paul V. Miles Fellowship Award given to Dr. Jeffrey Anderson based significantly on work done with NPC-QIC 
  • Dr. Jeffrey Anderson was invited for several national presentations to discuss collaboration and the work of NPC-QIC. 
    • a. Riley Children’s Hospital Grand Rounds
    • b. Duke Children’s Hospital Grand Rounds
    • c. University of North Carolina Children’s Hospital Grand Rounds
    • d. Dennison Young Symposium, Montefiore Hospital
    • e. ACC 2016 annual meeting: Congenital Heart Day
  • ACC 2016 annual meeting: NPC QIC Transparency, Stacey Lihn
  • Pediatric Congenital Heart Association (PCHA): Summit on Transparency and Public Reporting of Pediatric and Congenital Heart Disease Outcomes
  • Stacey Lihn was elected as a public member of the American Board of Pediatrics Foundation. She serves as the first parent representative for the ABP Foundation.
  • Institute for Healthcare Improvement presentation by Dr. Carole Lannon and Stacey Lihn in December of 2015
  • Swedish Pediatric Society by Dr. Carole Lannon, April 2016