Quality Improvement

Quality Improvement (QI):

  • Transforming health care and outcomes for children with rare diseases is difficult within the current health care system. Discovery and improvement is often limited by small numbers of patients at any one care center.
    • Individual care centers do not have enough children with a specific congenital cardiac defect to achieve appropriate sample sizes for research or quality improvement activities, making partnerships between multiple centers necessary. 
  • To achieve the mission and vision of NPC-QIC, the collaborative uses quality improvement science, the IHI’s Collaborative Model for Achieving Breakthrough Improvement, and the IHI's Model for Improvement (linked below) to improve care and redesign the system.
  • Successes and current progress of the collaborative are summarized in an Infographic that is updated quarterly. This infograhic is one way we share some of our measurable outcomes.

NPC-QIC assists members of our centers to build QI capability and improved outcomes through the following:

1. Infrastructure:
  • NPC-QIC provides the infrastructure that allows care centers to rapidly implement best care practices without expensive or time-consuming infrastructure development. This helps care centers by not requiring care providers to develop their own QI systems and network to achieve these capabilities.
2. Support:

Quality Improvement Faculty [MD], Quality Outcomes Manager [RN], and Quality Improvement Consultant, provide education and coaching about the QI processes as they pertain to HLHS including:

  • Systems framework and improvement methods for testing and implementing improvements–within single care centers and across all NPC-QIC care centers.
3. Collaboration across many care centers through:
  • “All teach, all learn” philosophy.
  • Collaborative learning sessions: held in person, with all NPC-QIC Care Centers and parents.
  • Learning Labs supporting key domains for Phase II: Fetal Perinatal, Surgical & ICU, Interstage, Neurodevelopmental, Nutrition and Growth, Transparency, Patient and Family Support.
4. Data management:
  • Secure, HIPAA-compliant data management infrastructure, including:
    • ​Web-based data entry, data storage, reports and data analyses.
5. Standardized tools developed from network successes:
  • Phase I interstage change package:
    • Parent partners and NPC-QIC care centers worked together to improve outcomes during Phase I which focused on the interstage period. All of the knowledge inspired by research and gained through quality improvement methods using the NPC-QIC data registry resulted was summarized in the Phase I: Interstage Change Package.
  • Growth 'Bundle':
    • The nutritional processes common to NPC-QIC care centers with positive infant weight gain, during the interstage period:
      • Use of standard post-Norwood feeding evaluation.
      • Use of home scales for interstage weight monitoring.
      • Specific weight gain/loss "red flags" to identify patients with growth failure during the interstage period.
      • Regular phone contact with families during the interstage period regarding nutrition and growth.v.Having a dietitian available for each cardiology outpatient visit during the interstage period.