Home | Newborn Screening Results: No News is Not Good News...It’s No News

Newborn Screening Results: No News is Not Good News…It’s No News

February 27, 2019

By Mat Edick, Ph.D.; Amy Gaviglio, MS, LCGC; Chuck Oberg, MD, MPH, FAAP; and Sue Berry, MD, FAAP

Newborn screening (NBS) is a baby’s first medical screen, but not all parents receive the screening results or understand their impact.  Primary care providers are often the only way parents receive their child’s newborn screening results; however, a recent survey of Minnesota families found that less than half of parent or guardians recall receiving NBS results from their primary care clinic.  No news is not good news, it is a missed opportunity to verify screening was completed and share important information with families.

With funding from the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services, the Midwest Genetics Network and MNAAP offered a free Maintenance of Certification Part 4 (MOC4) and training to pediatricians in Midwest states.  The MOC4 was designed to improve communications between providers, clinics, and parents around newborn screening results and referrals.  Nearly 60 Minnesota pediatricians participated in this MOC4 project along with 30 additional pediatricians from Wisconsin, North Dakota, South Dakota, Iowa, Michigan, Illinois, and Kentucky. Using a “virtual learning collaborative,” participants received training on three topics:

  • Newborn Screening: An introduction (with Amy Gaviglio, MS, LCGC)
  • Newborn Screening: Normal Results (with Susan A. Berry, MD and Whitney Thompson, MPHIL)
  • A Guide: Positive and Borderline Newborn Screen Results (with Miriam J. Behar, MD)

With two-thirds of the participating clinics completing their three audits by mid-December, the baseline rates of communication with parents about newborn screening results were only 30 percent in the participating clinics. Pediatricians implemented a variety of quality improvement projects to improve NBS results communications with parents including using the patient portal to communicate results to parents, new EHR tools/template changes to document NBS results communication with families, training staff at clinic to address misconceptions on NBS tests and need for results, new patient education materials and training on this topic for all new physicians and clinic staff

After two quality improvement initiatives at participating clinics, communication rates rose to over 60 percent. This was an encouraging result, however, there is still room for improvement. Participants who completed this MOC 4 have been offered additional MOC4 credits to complete additional rounds of quality improvement, and Midwest Genetics Network will be enrolling a new cohort of pediatricians to participate in this free MOC4 early in 2019.    

Additional free MOC4 opportunities in 2019 will be shared through upcoming MNAAP all member emails.

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