A new framework from the American Academy of Pediatrics published today aims to aide general pediatricians in better caring for premature babies who are at risk of developing developmental disabilities.
About 1 in 10 babies in the United States are born before full term. Even when they are discharged from neonatal intensive care units, these babies are still at risk for conditions like cerebral palsy, autism spectrum disorder, deafness, and severe hearing loss.
The framework, published in the journal Pediatrics , consolidates existing research into a guide for busy pediatricians to categorize patients as very high risk, high risk, or moderate-low risk for neurodevelopmental disabilities. The guidance also lists key identifiers to help providers flag issues early, such as asymmetry of hand use.
Beth Ellen Davis, MD, MPH, a framework author, said the goal is to help pediatricians determine what surveillance and screening they can conduct to promote positive health outcomes.
Davis said she wished she had this guidance on caring for children who were born prematurely during her 10 years as a general pediatrician in the US Army Medical Corps.
“I didn’t know what I was supposed to do differently with [the former NICU babies],” said Davis, a professor in the Division of Neurodevelopmental Behavioral Pediatrics at the University of Virginia in Charlottesville.
For instance, babies born earlier than 28 weeks who have hypoxic ischemic encephalopathy or retinopathy of prematurity (ROP) requiring surgery or intervention are classified as very high risk for the adverse outcomes, including intellectual disability.
The authors recommend follow-up and surveillance based on risk level at roughly 9-month intervals until around age 5. Each visit includes assessing for developmental milestones, like walking by 18-months or noting atypical pencil grasp at age 3.
Dr Kendall German
Kendell German, MD, a neonatologist at University of Washington Medical Center and Seattle Children’s Hospital and a co-author of the publication, said the tool will hopefully ensure that children are referred earlier to specialists.
“As neonatologists, we think about risk factors, but further out from birth, some of those things may be missed — particularly when we start thinking about kids who are transitioning in school and thinking about learning disabilities,” German said.
The guidance also outlines when pediatricians should — or should not — reassure families that an intellectual disability won’t develop. According to the authors, by age 3, the majority of children who have severe developmental disabilities will have been diagnosed.
“Some say you have to always keep suspicion out there for families of children who are born premature,” Davis said. “But we feel that after a period of time of monitoring and a child meeting their milestones, we can reassure parents that it is very unlikely their child will develop some of these severe developmental disabilities.”
Dr Douglas Vanderbilt
Douglas Vanderbilt, MD, MS, chief of the Developmental-Behavioral Pediatrics Division and director of Newborn and Infant Follow-Up Program at Children’s Hospital Los Angeles, said that general pediatricians and family practice clinicians may face barriers to implementation such as not having enough time to screen patients or difficulty collaborating with specialists.
But, “whatever we can do to articulate, educate, and facilitate a capacity within general pediatrics to improve training is a really good thing,” said Vanderbilt, who was not involved with the guidance.
The authors also highlighted lower-severity conditions that can result from prematurity, such as language and speech disorders, developmental coordination disorders, attention deficit hyperactivity disorder, and visual motor integration problems.
Dr Andrea Duncan
“Those of us in the medical field can be quite focused on the most severe disabilities that are possible,” said Andrea Duncan, MD, MSc, director of the Neonatal Follow-up Program at the Children’s Hospital of Philadelphia, who was not associated with the report. But, “most of the disabilities we see in follow-up are more subtle or milder but can have a very significant impact on school function, participation, and the overall quality of a child’s life.
Duncan said the framework doesn’t entirely put the onus on primary care clinicians, but helps stratify risk and indicates when referrals to specialists may be appropriate.
“The importance of partnerships really comes through,” with specialties like neurology, audiology, [and] developmental behavioral pediatrics, Duncan said. “As long as those partnerships are made and families have access to services, implementation should be relatively easy.”
The authors of the report declared no relevant financial relationships. Vanderbilt is a consultant for a startup called Develo. He has no equity in the company.
Pediatrics. Published online June 26, 2023. Full text
Kelly Ragan is a journalist living in Colorado.
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