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

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

Characteristics of Pediatric Cardiology That 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

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

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

The JCCHD National QI Initiative Guiding Principles

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

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.

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

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

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

Parent / Family Input Parent survey underway Summer-Fall 2007 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

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

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)

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

Project Timeline

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)