Welcome to Newborn Screen Positive Infant ACTion Project

1. Welcome to Newborn Screen Positive Infant ACTion Project Barry H Thompson, MD, FAAP, FACMG Lisa Cosgrove, MD, FAAP Ruth Gubernick, MPH Prework/Orientation Call March 30, 2010 This project is by the AAP Quality Improvement Innovation Network and the American College of Medical Genetics through an award from the Health Resources and Services Administration (federal award number U22 MC 03957; CFDA#93-110).

2. QuIIN Overview • Network of practicing pediatricians and their staff teams who use quality improvement methods to test tools, interventions, and strategies in order to improve healthcare and outcomes for children and their families • A practical working lab for pediatricians to test how improvements can be implemented in everyday pediatric practice prior to widespread dissemination • Like to be on the cutting-edge of practice innovations • AAP members with an interest, or experience in quality improvement • Approximately 190 members to date

3. QuIIN NBS Positive Infant ACTion Project Overview • Inborn errors of metabolism are rare and often unfamiliar to the average practicing pediatrician. • Immediate and short-term follow-up, coordinated with a metabolic specialist, are essential to an optimal clinical outcome for the affected infant.   •  After the identification of 29 treatable disorders (the primary newborn screening panel) in 2006, ACMG developed ACTion Sheets to assist in diagnosis/management by primary providers. • Phase 1 assessed utility of ACTion Sheets. •  Phase 2 will address utility of ACTion Sheets as a component of practice-based quality improvement focusing on immediate and short-term follow up .

4. QuIIN NBS Positive Infant ACTion Overview • Mission: To improve appropriate responses in the short-term management of infants affected by congenital conditions, identified through newborn screening. • Overall goal: For practicing pediatricians and their staff to use QI science over 6 months to assess the effectiveness of systems of care, including use of the ACT sheets, in assisting the pediatrician to provide appropriate responses in the short-term management of infants

5. QuIIN NBS Positive Infant ACTion Overview • Aims • to improve newborn screening processes in pediatric practices for all infants • to improve processes for managing infants identified with an out-of-range newborn screening result using the ACTion sheets • to test the ACT Sheets for improving NBS processes • to provide useful information for making improvements to the ACT sheets • to demonstrate the ACT sheets ability to guide care processes for conditions identified by NBS • to identify the capacity of the ACT sheets in improving care processes for newborn screen positive infant care

6. 15 Teams In 11 States 1 3 1 1 1 1 1 2 2 1 1

7. NBS Positive Infant ACTion Teams

8. High Level Project Timeline

9. Responsibilities Before Learning Session • Sign consent form (all 3 team members) • Make flight arrangements through AAP Travel Office (888/227-1772) and complete the RSVP form • Complete Pre-Inventory • Complete baseline chart reviews • Create a storyboard to share Fax consent form and RSVP form to Keri Thiessen 847/434-4996

10. Important Points • Cannot begin prework until consent form is completed by all team members • Teams who require local IRB must obtain IRB approval before beginning data collection • Contact Keri Thiessen (kthiessen@aap.org) for copy of AAP IRB application and approval letter

11. Baseline Chart Documentation Forms • Chart Reviews for 3 Sets of Patients: • First 10 Newborns • First 10 patient charts of newborns seen for the first time in the practice during the appropriate previous review month • Out of Range NBS Results • All charts of infants identified as having an out-of-range newborn screening result during the appropriate previous review month • Diagnosis of Significant Medical Condition • All charts of infants given a diagnosis of a significant medical condition detected by NBS during the appropriate previous review month • Complete all 3 sets of SurveyMonkey Forms no later than April 30, 2010

12. Data Collection Websitehttp://www.aap.org/qualityimprovement/quiin/workspaces/NewbornScreening/DataCollection/NBS_April-Prework.html

13. Chart Review Log Sheet

14. Chart Documentation Form - NB

15. Chart Documentation Form – NB Con’t.

16. Chart Documentation Form – OR

17. Chart Documentation Form – OR Con’t.

18. Chart Documentation Form – OR Con’t.

19. Chart documentation Form - SMC

20. Chart documentation Form – SMC Con’t.

21. Practice Inventory – https://www.surveymonkey.com/s/6RBSNMP Complete Pre- Inventory by April 30, 2010

22. Storyboard Preparation • Tell your team’s story • Name and location of practice • Description of practice • Team members (include pictures!) • Aim statement • Current state of care • Other information • 10-12 individual sheets • Poster board (30x40 in), push pins, and supplies will be provided • Present storyboard evening of May 21, 2010

23. Learning Session Overview • May 21, 2010: 5:30-9 pm • Introduction to QuIIN • Project overview • Storyboard Presentations • Light dinner will be served • May 22, 2010: 7:00-3:30 (breakfast at 6:45) • Introduction to NBS Topics • Quality Science (Model for Improvement) • Team planning time • Breakfast and lunch will be served

24. Important Dates and Next Steps

25. Questions