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Newborn Screen Positive Infant ACTion Project

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Aims
 
1) Between June 1, 2010 and November 30, 2010, the Newborn Screen Positive Infant ACTion Project practice teams aimed to improve newborn screening processes in pediatric practices for all children so that:
 
  • 100% of infants receive assessment at first visit for completion of newborn screening.
  • 100% of charts are flagged for patients who are not screened.
  • 100% of newborn screening results are received before the 2- to 4-week visit. 
  • 100% of in-range newborn screening results are documented in the infant’s chart and shared with parents.
2) Between June 1, 2010 and November 30, 2010, the Newborn Screen Positive Infant ACTion Project practice teams aimed to improve the processes for managing those children identified with an out-of-range newborn screening result using the ACTion sheets so that:
 
  • 100% of parents of infants with an out-of-range newborn screening result receive condition-specific information and support.
  • 100% of infants with an out-of-range screening result receive confirmatory testing and/or definitive consultation with subspecialists.
  • 100% of false out-of-range newborn screening results are documented in the infant’s chart and discussed with parents.
  • 100% of infants given a diagnosis of a significant medical condition detected by newborn screening are identified as a child with special health care needs and are provided a medical home (i.e. entered into the practice’s children with special health care needs registry and chronic condition management initiated).
3) Between June 1, 2010 and November 30, 2010, the Newborn Screen Positive Infant ACTion Project practice teams aimed to test the ACT Sheets for improving newborn screening processes so that:
 
  • 100% of participating providers in the practice reviewed the ACT sheets for infants with an out-of-range newborn screening result.
  • 100% of participating providers in the practice followed the recommendations in the ACT sheets.
And to:
 
  • Provide useful information for making improvements to the ACT sheets.
  • Demonstrate the ACT sheets ability to guide care processes for conditions identified by NBS.
  • Identify the capacity of the ACT sheets in improving care processes for newborn screen positive infant care.
Example Measures
 
Measure Name and Description
How Calculated
Aim 1 Measures
Percent of infants who receive assessment at first visit for completion of newborn screening. (Process)
Numerator:
# of infants with documentation in chart that assessment regarding completion of newborn screening was received at first visit.
Denominator:
All infants seen in participating practice whose charts are reviewed.
Percent of charts are flagged for patients who are not screened. (Process)
Numerator:
# of infants with documentation (flag) in/on chart that newborn screening was not done
Denominator:
All infants seen in participating practice whose charts are reviewed and found to be not screened.
Percent of newborn screening results that are received before the 2- to 4-week visit.  (Process)
Numerator:
# of infants with documentation in chart that newborn screening results were received before the 2- to 4-week visit.
Denominator:
All infants seen in participating practice whose charts are reviewed.
Percent of in-range newborn screening results that are documented in the infant’s chart and shared with parents. (Process)
Numerator:
# of infants with documentation in chart that in-range newborn screening results have been shared with parents.
Denominator:
All infants seen in participating practice whose charts are reviewed.
Develop office policies and procedures to ensure that newborn screening is conducted and that the results are transmitted to the practice in a timely fashion. (Process)
Yes/No
Develop strategies to use if these systems fail.
(Process)
Yes/No
Team is very familiar with current testing and reporting processes and resources for their state (conditions being screened and basic operations).
(Process)
Yes/No
Familiar with local protocols for rescreening.
(Process)
Yes/No
Provide educational materials regarding newborn screening, in appropriate languages and literacy levels, to distribute to expectant parents, parents who may decline newborn screening and parents whose child’s screening returns out-of-range or inconclusive results. (Process)
Yes/No
Aim 2 Measures
Percent of parents of infants with an out-of-range newborn screening result who receive condition-specific information and support. (Process)
Numerator:
# of parents of infants with an out-of-range newborn screening result who received condition-specific information and support.
Denominator:
All infants seen in participating practice whose charts are reviewed.
Percent of infants with an out-of-range newborn screening result who receive confirmatory testing and/or definitive consultation with sub-specialists.
(Process)
Numerator:
# of infants with an out-of-range screening result who received confirmatory testing and/or definitive consultation with sub-specialists.
Denominator:
All infants seen in participating practice whose charts are reviewed.
Percent of false out-of-range newborn screening results that are documented in the infant’s chart and discussed with parents. (Process)
Numerator:
# of infants with documentation in chart that false out-of-range newborn screening results have been discussed with parents.
Denominator:
All infants seen in participating practice whose charts are reviewed and have false out-of-range results indicated.
Percent of infants given a diagnosis of a significant medical condition detected by newborn screening who are identified as a child with special health care needs and are provided a medical home (i.e. entered into the practice’s children with special health care needs registry and chronic condition management initiated). (Process)
Numerator:
# of infants given a diagnosis of a significant medical condition detected by newborn screening who are identified as a child with special health care needs and are provided a medical home.
Denominator:
All children seen in participating practice whose charts are reviewed.
Person (s) identified with whom to consult in the case of out-of-range screening results and ensure contact information is readily available. (Process) Yes/No
Identify and have contact information for local or regional pediatric medical sub-specialists to whom infants can be referred. (Process) Yes/No
Establish registries to identify, follow and provide chronic condition management for children with special health care needs. (Process) Yes/No
Aim 3 Measures
Percent of providers in the practice who review the ACTion sheets for infants with an out-of-range newborn screening result. (Process)
Numerator:
# of infants with documentation in the chart that the provider reviewed the ACTion sheet for an out-of-range newborn screening result.
Denominator:
All infants seen in participating practice whose charts are reviewed.
Percent of providers in the practice who followed the recommendations in the ACTion sheets.
(Process)
Numerator:
# of infants with documentation in the chart that the provider followed the recommendations in the ACTion sheet for an out-of-range newborn screening result.
Denominator:
All infants seen in participating practice whose charts are reviewed.
Have access to ACTion sheets for suspected conditions. (Process)
Yes/No
Balancing Measure
Identify potential adverse impacts of the collaborative on the efficiency of the practice.  (Balancing) Likert Rating Scale (1-5)


Teams
Fifteen clinical teams were selected from the AAP Quality Improvement Innovation Network as part of the Newborn Screen Positive Infant ACTion Project. Each team consisted of a physician leader plus 2 other members of the practice (generally a nurse and an administrator). Click here to see a list of all of the clinical teams.
 
Clinical teams were responsible for:
  • Completing Prework activities prior to the Learning Session, including completion of a pre-survey (Inventory) and collection of simple baseline data.
  • Collecting and submitting at baseline and monthly (for a total of 7 months), simple data through chart reviews and reports.
  • Working with other members of the practice’s clinical team to improve care processes related to newborn screening processes.
  • Participating in 2 face-to-face Improvement Workshops (Learning Sessions).
  • Learning the Model for Improvement and implementing Plan, Do, Study, Act (PDSA) cycles.
  • Sharing lessons learned and problem-solving with other participating practices through monthly conference calls and e-mail.
  • Using e-mail and the Internet on a regular basis for ongoing support, information, and communication among practice teams.
  • Testing innovations in care delivery to improve newborn screening processes.
  • Completing a post-survey (Inventory) and ACT Sheet Evaluation survey.
  • If owned by a health care institution, seeking Institutional Review Board approval for participation.
Project Design
Phase 1 of the project consisted of a test of utility of 10 of the ACMG’s ACT sheets. Participating physicians were asked to review 10 ACT sheets and complete a brief on-line survey (via Survey Monkey) providing feedback about the ACT sheets. Questions were asked about the sheets’ utility of the information, format, and level of detail provided in the forms.
 
The Newborn Screen Positive Infant ACTion Project used the Model for Improvement quality improvement methodology. 15 clinical teams participated in an adapted learning collaborative to improve appropriate responses in the short-term management of infants affected by congenital conditions, identified through newborn screening and 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.
Testing occurred over 6 months using Plan, Do, Study, Act (PDSA) cycles. The overall design of the improvement project included:
 
  • Baseline assessments: Clinical teams assessed their current level of performance with respect to implementation of care processes related to newborn screening.
  • Learning Session 1: Clinical teams were oriented to the draft materials/tools, received results from baseline assessments, and were trained on the quality improvement methodology (Model for Improvement) for implementing process changes in a face-to-face session.
  • 6-month testing phase: Clinical teams developed a plan to improve care processes; utilized PDSA cycles to test tools, measures, and data collection instruments related to same; and reviewed monthly run charts.
  • Monthly conference calls: Clinical teams shared results of their tests with project faculty and other teams, questions were answered, and specific topics were discussed.
  • Learning Session 2: Clinical teams came together face-to-face at the end of the project to review preliminary project results, learn from the successes of other teams, and discuss and plan for sustainability and spread.
Project Data Collection included:

  • Chart Review | Instructions for Chart Review
    • 10 charts of newborns seen for the first time in the month prior.
      Download Form
    • All infants with out-of-range newborn screening results seen the month prior. Download Form
    • All infants given a diagnosis of a significant medical condition detected by newborn screening during the month prior
      Download Form
  • Practice Inventory Survey: At pre- and post-, teams were asked to assess existing systems for providing care using this inventory.
  • Monthly Progress Reports: Monthly progress reports allowed clinical teams to describe specific changes and tools they have tested and rate the ACT sheets. They helped faculty to monitor progress and needs of practice teams.
  • ACT Sheet Evaluation Survey: At the end of the 6-month testing period, clinical teams provided feedback on ACT sheets using this evaluation survey.
  • Learning Session Evaluation: A standard workshop evaluation was used to determine the effectiveness of each learning session. LS1 | LS2
Resources for Clinical Teams:

A special thanks to our Newborn Screen Positive Infant ACTion Project Expert Group:
  • Lisa A Cosgrove, MD, FAAP, Co-Chair
  • Barry H Thompson, MD, FAAP, FACMG, Co-Chair
  • Timothy Geleske, MD, FAAP
  • Ruth Gubernick, MPH, QI Advisor
  • Cynthia F Hinton, PhD, MS, MPH
  • Celia Kaye, MD, PhD, FAAP
  • Alex Kemper, MD, MPH, MS, FAAP
  • Robert A Saul, MD, FAAP
 
timeline 
Results:

This project was funded by the American Academy of Pediatrics 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).

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