CDC, AAP update developmental surveillance tools

The “Learn the Signs, Act Early” Program, an effort of the Centers for Disease Control and Prevention (CDC) and the American Academy of Pediatrics (AAP), updates developmental surveillance tools to promote timely surveillance and intervention.

Early recognition and intervention are 2 of the most important tools in the pediatrician’s arsenal when it comes to developmental delays. However, because best practices for developmental surveillance and official guidelines have never been developed, there are missed opportunities for some children who may be falling behind their peers.

The Centers for Disease Control and Prevention (CDC) and the American Academy of Pediatrics (AAP) recently joined efforts through the CDC-funded “Learn the Signs, Act Early” Program to review and revise checklists for developmental surveillance.1

The group’s goal was to use evidence-informed milestones to help pediatricians know when and how to screen children between recommended ages. The result of their efforts was the creation of new resources that can help open conversations about development timelines.

Jennifer Zubler, MD, FAAP, a pediatrician based in Atlanta, Georgia, and lead author of the report, said the goals of the new checklists are to identify and help children with developmental delays or disabilities sooner.

“Developmental delays and disabilities are common,” Zubler said. “Evidence shows that starting supports as early as possible is best. The earlier a child is identified; the sooner targeted intervention and family supports can start.”

These surveillance tools are just 1 part of the effort to identify children with delays early, she aded. Development surveillance already occurs at each well-child visit, but these are different that the screenings addressed in this report.

“The revisions were designed to alert parents and early childhood professionals on when to act and do additional developmental screening, beyond the universal developmental screenings,” Zubler explained.

Historically, developmental checklists have listed average or median ages when children were expected to reach certain milestones, but they gave little guidance for clinicians or caregivers on when to be concerned about deviations from those norms. The report explained that most clinicians take a “wait-and-see” approach when encountered with children who miss milestones, assuming they are just on the later end of the “average” spectrum. However, the report points out that CDC focus groups with parents of children with disabilities reveal they often face treatment delays because they have been told that missed milestones are common as children develop at different rates.

In 2004, the CDC developed a series of free checklists for parents to help them identify warning signs when it comes to missed milestones. These checklists featured signs that development may indeed be delayed and not just a result of natural variation. Although these lists were a good start, the CDC/AAP efforts identified several areas for improvement, including additional surveillance periods and clarification on what percentiles are considered for each milestone.

For example, the group suggests that all milestones should be easily observed in the natural setting in 75% or more of children at a given age. Previous versions of the checklists used the 50th percentile as a cutoff.

The group ended up adding milestones for the 15-month and 30-month well visits, reducing about a quarter of CDC’s previous milestones, and replacing another 40%. A third of the milestones in the previous checklist were moved around to different ages, with most of them—about 67%—being moved from lower to higher age groups.

Development surveillance is important for all children, but especially for those with developmental delays or disabilities. Regular screening plus additional screening based on clinical judgment is an important way to identify and act early when these delays are identified.

In the end, the group took the CDC’s previous 216 milestones across 10 checklists and transformed them into 159 milestones across 12 checklists. About 60% of the milestones in the final version were based on CDC’s original milestones, and about 40% were added as a result of the work of the research group. A third of the CDC’s milestones that were left in the final checklists were moved to older age groups considering that 75% or more of children were now expected to be able to meet these milestones instead of 50%.

When looking at the changes by category, the group made the following changes:

  • A 50.7% decrease in cognitive milestones
  • A 27.5% decrease in social-emotional milestones
  • A 9.1% decrease in language milestones
  • A 6.4% decrease in motor milestones

These checklists are not intended to be a firm guidance tool when it comes to development, but an opportunity to prompt discussion between parents and clinicians.

These health communication tools can increase awareness of development delays and encourage parents and clinicians to ask more open-ended questions about a child’s development.

“The revisions attempt to provide families and early childhood providers with actionable milestones that, if missing, would encourage providers and families to take the next step and do developmental screening,” Zubler noted. “These are not guidelines or standards and never have been. They are part of health communication tools specifically designed to support developmental surveillance.”

The use of milestone checklists in pediatric practice has increased from 53% in 2003 to 89.6% in 2016, but they are intended to complement—not replace—universal developmental screening guidelines.

According to the report, early identification and intervention improves outcomes for the 1 in 6 children with development disability, yet less than a quarter of these children have their needs identified and get help before age 3 years. In many cases, children with emotional, behavioral, and development conditions don’t receive intervention services until around age 5 years. Although developmental screening is important, ongoing surveillance as outlined in these checklists may be able to help pediatricians get these children the help they need sooner.

Zubler said there are additional features of these checklists that can help parents and families, too. These include:

  1. Informing parents that routine developmental screening is recommended at specific ages and any time there are concerns
  2. Encouraging caregivers to attend well visits
  3. Informing families about how to access early intervention programs in their state
  4. Supporting families with tips and activities to encourage their child’s development

“The hope is that more children will receive additional developmental screening, when developmental surveillance indicates concern, whether those concerns are based on developmental milestones, answers to open-ended questions, or other developmental concerns families or early childhood professionals may have,” Zubler added.

References

1. Zubler J, Wiggins L, Macias M, et al. Evidence-informed milestones for developmental surveillance tools. Pediatrics. February 2022;149(3):e2021052138. doi:10.1542/peds.2021-052138.