The Pediatric Cardiology National Quality Improvement Collaborative

1. The Pediatric Cardiology National Quality Improvement Collaborative To Improve Care and Outcomes for Children with Cardiovascular Disease

2. Pediatric CardiologyQI Collaborative • Brief Background • Current Status • Near-term Plans • Long-term Challenges

3. Characteristics of Pediatric CardiologyThat Underscore the Need for QI Collaboratives • Cardiac surgical mortality has largely been conquered (since the 1980-90’s), and now an emphasis must be placed on reducing morbidities • Provides care for many, rare congenital cardiac defects • Ability to study & improve outcomes is limited by small volumes at any center • Few evidence-based treatment guidelines • Formal QI Science is foreign to our specialty • Clear need for multicenter collaboratives/registries to study clinical processes and outcomes

4. The JCCHD National QI InitiativeGoals • To improve care & outcomes for children with cardiovascular disease • To do so in a multi-institutional, collaborative fashion • To develop a sustainable national registry to study care processes & outcomes • To apply formal Quality Improvement methods to test changes, rapidly identify and spread improvements

5. Cardiology QI Collaborative 2005The JCCHD committed to developing a National QI Collaborative for Pediatric Cardiology • Rob Beekman – Cincinnati Children’s Hospital Medical Center • Kathy Jenkins –Children’s Hospital Boston • Tom Klitzner – Mattel Children’s Hospital at UCLA • John Kugler – Children’s Hospital, Omaha, Nebraska • Gerard Martin – Children’s National Medical Center, DC • Steve Neish – Texas Children’s Hospital, Houston • Geoff Rosenthal – Children’s Hospital at Cleveland Clinic Task Force Assembled in 2006: Center for Health Care Quality • Carole Lannon • Laura Brown

6. The JCCHD National QI InitiativeGuiding Principles

7. Cardiology QI Collaborative Project Selection Criteria • Clinically important • Potential for improvement • Under purview of Pediatric Cardiology • Specific and measurable • Generates enthusiasm

8. Cardiology QI Collaborative Initial Project Aim To improve survival and quality of life in infants with a single ventricle during the “interstage” period between Discharge after Neonatal Cardiac Surgery and Admission for Bidirectional Glenn.

10. Cardiology QI Collaborative Key Drivers Possible Changes to Test Assure appropriate discharge communication / coordination Optimize nutritional status during the interstage period AIM Improve survival & quality of life in infants with a single ventricle during the interstage between discharge from neonatal surgery and admission for the Glenn. Improve interstage surveillance and response to changes in cardiovascular status Patient Characteristics Surgical Outcome Medical Management Under Development with input from families

11. Cardiology QI Collaborative Examples of Possible Changes to be Tested • Detect and Respond to Changes in Cardiac Status at Home • Specific surveillance protocols: 4 levels of vigilance • Home measurement of O2 sat and weight daily • Home measurement of O2 sat daily • Weekly measurement of O2 sat and weight by pediatrician or visiting nurse • “Usual” care with cardiology clinic follow-up visits per routine • Red Flag System • To clearly define for parents what changes to look for in their child • To define exactly what they should do in response

12. Cardiology QI Collaborative Examples of PossibleChanges to be Tested • Optimize Nutritional Status • Specific feeding protocols • Explicit caloric goals identified and updated at each clinic visit • System to track weights at frequent intervals • Regular involvement of Nutritionist in outpatient care • Better systems to communicate/teach feeding plan to family

13. Cardiology QI Collaborative Parent / Family Input • Parent survey underway Summer-Fall 2007 • Will involve 20-30 families of infants with a single ventricle from 7 centers • Survey translated into Spanish for Latino families • IRB approval obtained in May 2007

14. Cardiology QI Collaborative Parent Survey • Most questions are open-ended • An opportunity for parents to enlighten the project in unexpected ways • Major Topics: • What do parents need to better care for their infant? • How can we incorporate parents into the healthcare team? • How to better monitor infant at home (e.g. “red flags”) • Parent knowledge/skills re: Feedings & Medications • Discharge communications (handoffs) with other caregivers

15. Cardiology QI Collaborative Database & Measures AreUnder Development • Kathy Jenkins (Boston), Geoff Rosenthal (CCF) and Rob Beekman (Cincinnati) are working on definition of database elements and measures • Measures required to establish a Multicenter Registry of infants with a single ventricle • To support the initial QI project, and future projects as well • Will be coordinated with existing database measures/definitions as possible (e.g. STS congenital heart surgery database)

16. Cardiology QI Collaborative Funding • Pilot Funding ($360,000) obtained from the Cincinnati Children’s Heart Association • Support for initial 2-3 years. • Grant Application submitted June 2007 to the Children’s Heart Foundation • Support for an additional 2 years

17. Project Timeline

18. Cardiology QI Collaborative When might this effort improve the 1st child’s care? • February 2008: Tests of Change will begin in at least 7 Cardiology centers. • Rapid cycle, iterative tests of change (rapid data feedback, assessment & revision of changes, reassessment – i.e. PDSA cycles) • Based on the Model for Improvement • Probably using a Factorial Design (testing several levels of home surveillance and nutritional interventions)