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

2. Pediatric Cardiology QI Collaborative
Brief Background
Current Status
Near-term Plans
Long-term Challenges

3. Characteristics of Pediatric Cardiology That Underscore the Need for QI Collaboratives
Cardiac surgical mortality has largely been conquered (since the ’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 Initiative Goals
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
2005 The JCCHD committed to developing a National QI Collaborative for Pediatric Cardiology
Task Force Assembled in 2006:
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
Center for Health Care Quality
Carole Lannon
Laura Brown

6. The JCCHD National QI Initiative Guiding Principles

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

11. Examples of Possible Changes to be Tested
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. Examples of Possible Changes to be Tested
Cardiology QI Collaborative
Examples of Possible Changes 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. Parent / Family Input Parent survey underway Summer-Fall 2007
Cardiology QI Collaborative
Parent / Family Input
Parent survey underway Summer-Fall 2007
Will involve families of infants with a single ventricle from 7 centers
Survey translated into Spanish for Latino families
IRB approval obtained in May 2007

14. Parent Survey Most questions are open-ended Major Topics:
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. Database & Measures Are Under Development
Cardiology QI Collaborative
Database & Measures Are Under 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. When might this effort improve the 1st child’s care?
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)