OUR NETWORK

What is NPC-QIC?

The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) is a network of over 60 pediatric cardiology care centers across the United States, Canada, and the United Kingdom. With our parent partner organization, Sisters by Heart, we work together with families, clinicians, researchers, and patients to dramatically improve the outcomes for children with cardiovascular disease.

Mission: Our mission is to decrease mortality and improve quality of life for infants with single ventricle congenital heart disease and their families.

Vision: Our vision is to dramatically improve the outcomes of care for children with cardiovascular disease.

Phase 1

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 69 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 recently switched from a Learning Lab to a Learning & Improvement Framework. Read more information about that structure on our Our Work page.

Our Success

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 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.

Transparency Across the Network

Consensus between collaborating parents and care centers within NPC-QIC determined transparency a necessary focus to continue improving care and outcomes for our patients. Comprised of parents of children with congenital heart disease and NPC-QIC participating clinicians, a working group was born - devoting efforts to understanding transparency activities across the Collaborative. Along with communicating and applying transparency recommendations, the NPC-QIC Transparency Work Group’s most recent accomplishment is the November 2015 Congenital Heart Disease publication. The article, titled “Transparency in a Pediatric Quality Improvement Collaborative: A Passionate Journey by NPC-QIC Clinicians and Parents," explains the transparency framework and approach within NPC-QIC. 

The Power of Learning Networks

Learn more about learning networks, how they work, the learning health systems model, and more via the video below.