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Key Findings: Improving Newborn Screening Follow-up in Pediatric Practices: Quality Improvement Innovation Network

Photo: A baby

Pediatrics has published a new study: “Improving Newborn Screening Follow-up in Pediatric Practices: Quality Improvement Innovation Network.” You can read the article’s abstract here. See below for a summary of the findings from this article.

Main Finding from this Study:

A 6-month quality improvement project in 15 primary care pediatric practices enhanced short-term newborn screening follow-up. The project included assessment of screening results, documentation of results, and communicating results to families.

About this study:

  • What is newborn screening?

    Soon after birth, all babies born in the United States are checked for certain medical conditions. This process is called newborn screening. All babies are screened, even if they look healthy, because some medical conditions cannot be seen by just looking at the baby. Finding these conditions soon after birth can help prevent some serious problems, such as brain damage, organ damage, and even death.

    Each state runs its own newborn screening program. All states require screening for at least 26 conditions, including screening for hearing loss. Screening for critical congenital heart defects has started in some state programs and in individual hospitals in states where this screening is not yet required.

  • Why is this study important?

    Primary care providers for children play a central role in the process of newborn screening. Providers make sure that testing is completed or parents have explicitly opted out of screening. Providers also check that results are obtained in a timely manner. Providers make sure that babies who fail newborn screening are followed up. Follow-up can include additional testing or starting treatment. Despite the key role of these providers in follow-up, a survey of primary care pediatricians revealed that 28% did not actively seek results of newborn screening for their patients and presumed that “no news is good news”.

    This study described a 6-month quality improvement project in 15 primary care pediatric practices that was started to improve short-term newborn screening follow-up. At the start of the project, each practice completed a survey to evaluate office systems related to newborn screening. Medical charts were reviewed at the beginning of the project and over 6 months to track changes in care processes. Practices were given information about newborn screening and trained in quality-improvement methods. Practices introduced changes to improve care. The overall goal of this project was to improve short-term newborn screening follow-up care through the use of web-based decision support tools called ACTion sheets, which guide providers through steps to take after a baby fails a newborn screen.

  • What were the study results?
    • This project demonstrated that primary care pediatric practices can improve short-term follow-up of newborn screening through quality-improvement processes.
    • The number of practices that checked all babies to make sure they had newborn screening results went from 7 to 12, out of 15.
    • The number of practices that put newborn screening results in babies’ medical charts and shared the results with the babies’ parents increased:
      • 5 of 15 practices did this for all babies (up from 2)
      • 10 of 15 did this for 70% of babies (up from 4)
    • 7 of 15 practices increased their rate of review of the ACTion sheets
      • 5 of 15 reviewed the ACTion sheet for all failed results and followed the recommendations, whereas only 1 did at the beginning of the study
    • The ACTion sheet recommendations were more likely to be followed by the end of the project.
    • Confirmatory testing or consultation with a subspecialist increased.
    • Practices used several methods to improve care, including adopting practice guidelines, having a practice champion, and using electronic reminders on electronic health records.
    • The project provided a useful forum for practices to share information and tools.
    • Parents became part of the active reminder system for practices.
    • Providers perceived no increase in provider time at the first visit, 2- to 4-week visit, or during first contact with the family of an infant who had failed the initial screening test.

Newborn Screening Follow-Up: CDC Activities

  • CDC funded pilot projects in 4 states to collect data on long-term follow-up of children with confirmed newborn screening conditions. Follow-up of these children makes sure that they receive the full benefits of early identification through newborn screening. Tracking health outcomes for these children is also important for public health to understand ways to help children with newborn screening conditions lead healthier lives and prevent complications.
  • CDC’s Early Hearing Detection and Intervention (EHDI) Program works with states and territories to ensure that infants are screened for hearing loss no later than one month of age, infants who do not pass the screening for hearing loss get a full hearing evaluation no later than 3 months of age, and infants with a hearing loss receive intervention services no later than 6 months of age.
  • CDC has been charged by the HHS Secretary to evaluate the ability of state birth defects tracking systems to check how effective critical congenital heart defect (CCHD) newborn screening programs are. State birth defects programs already collect data on prevalence of congenital heart defects and could evaluate false positive (a baby who failed the CCHD screening but does not actually have a CCHD after further evaluation) and false negative (a baby who passed the screen suggesting there was no CCHD but actually did have a CCHD). Differences across states in resources and methods used to identify affected children could affect how state programs can provide help with implementing and evaluating CCHD screening.


Hinton CF, Neuspiel DR, Gubernick RS, Geleske T, Healy J, Kemper AR, Lloyd-Puryear MA, Saul RA, Thompson BH, Kaye CI. 2012. Improving Newborn Screening Follow-up in Pediatric Practices: Quality Improvement Innovation Network. Pediatrics. 130: e1-e7.