Children with special health care needs may be undercounted

ByRose Weldon

Fact checked byCarol L. DiBerardino, MLA, ELS

Key takeaways:

A screener to identify children with special health care needs may be leaving some uncounted.
Around four million children with these needs are not identified.

A yearly government-run survey may be undercounting children with special health care needs, according to a study published in Pediatrics.

Although the annual National Survey of Children’s Health seeks to count all children and youth with special health care needs (CYSHCN) via its Children with Special Health Care Needs screener, some children diagnosed with health conditions and functional difficulties do not meet the screener’s criteria, according to the new research. The survey is run by the U.S. Health Resources and Services Administration’s Maternal and Child Health Bureau.

“Prior work has explored the performance of the screener and populations that might be over or under counted,” Lindsey I. Black, MPH, an epidemiologist in the CDC’s Division of Health Interview Statistics, told Healio. “However, a thorough examination had not been completed using the redesigned National Survey of Children’s Health that launched in 2016.”

‘We have been systematically missing some children’

Black and colleagues pulled data from the 2016 through 2021 editions of the survey, which asks parents about their children’s health, and examined which children had been identified with a condition or disability based on the screener. They compared the characteristics and health-related outcomes of all 225,443 children in their data pool through four mutually exclusive groups they created: CYSHCN with conditions and difficulties; non-CYSHCN with conditions and difficulties; CYSHCN without conditions and difficulties; and non-CYSHCN without conditions and difficulties.

“We used these groups to examine sociodemographic differences between groups and examined health and social impacts at the child, family and health systems levels,” Black said.

Among the children who did not qualify as CYSHCN as per the screener, 6.8% had one or more condition and one or more difficulty. The percentage of children with conditions and functional difficulties not identified as CYSHCN ranged from 6.3% among those with cerebral palsy to 59.1% among those with allergies. Over a third each of children with asthma (34.5%), cystic fibrosis (41.4%), heart conditions (44.6%), frequent headache (44.7%) and blood disorders (54.6%) had not been identified as CYSHCN.

Including these children in the calculation of CYSHCN, the prevalence increases the national estimate from 19.1% to 24.6%, according to the researchers.

These children, who total over 4 million, are more likely to be female, Hispanic, underinsured or have parents with lower educational attainment, all groups who are less likely to use health care systems, Black said.

“We have been systematically missing some children with significant medical needs, and impacts in the National Survey of Children’s Health,” Black said. “These children have not previously been counted as CYSHCN because of the different ways that some people answer questions on the survey, and lack of endorsing the screener criteria. It’s important to count these children for public health monitoring and research purposes to make better and more informed decisions about policy and program design and implementation.”

Black said the findings are informative for researchers and policy leaders "to understand and use this expanded group to tailor child health policy” but noted that there are concerns that changes to the calculation of CYSHCN will create such a range of children that it will be hard to measure progress among them.

“It may be of interest to identify policy-relevant subgroups within the broader CYSHCN so that research can track progress by subgroup type and that program and policies can be developed better tailored to meet needs,” Black said. “Non-CYSHCN who have conditions and difficulties look a lot closer to CYSHCN who may not have quite as complex of conditions and difficulties. Although parents of these children are not endorsing the screener, they are experiencing major health impacts at the child, family and health systems levels.”

‘We need to count them accurately’

In an accompanying editorial, Jeffrey P. Brosco, MD, PhD, of HHS’s Maternal and Child Health Bureau (MCHB), and colleagues noted that the bureau published a “Blueprint for Change” in Pediatrics in 2022, “as a framework for improving outcomes for CYSHCN and their families.”

“At the core of the blueprint is the commitment ensuring that every CYSHCN receives the health and related services they need to play, go to school, and become a healthy adult, as well as ensuring that caregivers and siblings are thriving too,” they wrote. “To reach every CYSHCN and their family, we need to count them accurately.”

They said the screener had been developed in the 1990s as a way of identifying children with existing special health care needs at a population level.

“Black, et al note that this definition-driven, operational approach to calculating the number of CYSHCN in MCHB’s National Survey of Child Health may undercount certain groups of children,” they wrote. “MCHB looks forward to working with youth, families,

scholars, and policy leaders in the coming months and years to rethink how we think, analyze, and talk about ways to conceptualize and measure child health for the

next generation.”