Welcome to Newborn Screen Positive Infant ACTion Project

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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 CFDA93-110).
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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

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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 .

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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

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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

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15 Teams In 11 States
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3
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NBS Positive Infant ACTion Teams
Urban Rural Suburban

All About Children Pediatric Partners PC Sandhills Pediatrics ALL PEDIATRICS
Cleveland Clinic Children's Hospital Greeley Medical Clinic
CMC Myers Park Pediatrics Mercy Pediatric Clinic
Community Medicine Associates Pediatric Adolescent Health Associates
Crozer Pediatrics Pediatric Associates, PSC
Flushing Hospital Medical Center Priority Care Pediatrics
Pediatric Clinic, University Health Care ABC Family Pediatricians

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High Level Project Timeline
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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

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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_at_aap.org) for
  copy of AAP IRB application and approval letter

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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

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Data Collection Websitehttp//www.aap.org/qual
ityimprovement/quiin/workspaces/NewbornScreening/D
ataCollection/NBS_April-Prework.html
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Chart Review Log Sheet
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Chart Documentation Form - NB
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Chart Documentation Form NB Cont.
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Chart Documentation Form OR
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Chart Documentation Form OR Cont.
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Chart Documentation Form OR Cont.
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Chart documentation Form - SMC
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Chart documentation Form SMC Cont.
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Practice Inventory https//www.surveymonkey.com/
s/6RBSNMP

• Complete Pre- Inventory by April 30, 2010

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Storyboard Preparation

• Tell your teams 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

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Learning Session Overview

• May 21, 2010 530-9 pm
• Introduction to QuIIN
• Project overview
• Storyboard Presentations
• Light dinner will be served
• May 22, 2010 700-330 (breakfast at 645)
• Introduction to NBS Topics
• Quality Science (Model for Improvement)
• Team planning time
• Breakfast and lunch will be served

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Important Dates and Next Steps
Prior to April 1, 2010 Determine local IRB process and obtain IRB approval if necessary
March 31, 2010 Sign fax consent form to Keri Thiessen at 847/434-4996
April 21, 2010 Fax travel RSVP form to Keri Thiessen at 847/434-4996 Final date to make travel arrangements. Must use AAP Travel Office (888/227-1772)
April 30, 2010 Final date to complete Pre-inventory, using SurveyMonkey form Final date to complete chart reviews for 3 sets of newborn/infant patients, using SurveyMonkey forms
May 20, 2010 May 21-22, 2010 Storyboard completion Attend Learning Session
June-Nov, 2010 Action Period Monthly Chart Documentation Forms Monthly Progress Reports Monthly conference calls
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Questions