Neurodevelopmental Disorders Among Publicly or Privately Insured Children in the United States

Straub, Loreen; Bateman, Brian T.; Hernández–Dı́az, Sonia; York, Cassandra; Lester, Barry; Wisner, Katherine L.; McDougle, Christopher J.; Pennell, Page B.; Gray, Kathryn J.; Zhu, Yanmin; Suarez, Elizabeth A.; Mogun, Helen; Huybrechts, Krista F.

doi:10.1001/jamapsychiatry.2021.3815

Cited by 39 publications

(34 citation statements)

References 25 publications

(55 reference statements)

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“…Consistent with other studies [ 32 , 33 , 34 ], we found an overrepresentation of male children with NDD, which may have an X-linked chromosomal effect [ 35 ]. However, despite being majorly male, there was no sex differences at the child level in term of access to care and food insecurity.…”

Section: Discussionsupporting

confidence: 92%

Unmet Medical Needs and Food Insecurity in Children with Neurodevelopmental Disorders: Findings from the 2019 National Health Interview Survey (NHIS)

et al. 2022

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In the United States, 17% of children ages 3–17 have a developmental disorder. The complexity of care for such children require families to provide a significant amount of health care at home, representing a substantial economic cost. Our study identifies sociodemographic characteristics of children with neurodevelopmental disorders (NDD) that are predictive of unmet medical needs and food insecurity. We modeled the outcomes using a multivariable generalized linear model and a robust Cox proportional hazard model. Among children with NDD, 7.4% reported a delay in obtaining care, 3.6% avoided getting care and 17.3% live in a household that experienced food insecurity. Lack of health insurance and lack of usual source of care increased the risk for cost-related delay in medical care and cost-related avoidance of medical care. Children with NDD whose parents have less than a college degree and those from households with income <$75,000 had increased risk for food insecurity in the past 30 days. Our results underscore the need to implement additional screening to identify children with NDD who are at greater risk for unmet medical and social needs by health care providers and care coordination organizations.

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Section: Discussionsupporting

confidence: 92%

Unmet Medical Needs and Food Insecurity in Children with Neurodevelopmental Disorders: Findings from the 2019 National Health Interview Survey (NHIS)

et al. 2022

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“…When considering research examining the age at which children are likely to receive a neurodevelopmental condition diagnosis, studies typically report either population-level data obtained from national administrative databases or detailed patient-level data collected from children participating in research studies, research networks or private assessment clinics. A recent population-based cohort study in the USA reported that the incidence and timing of neurodevelopmental condition diagnoses varied by insurance type, with diagnoses made earlier for privately insured children, relative to publicly insured children 12. Furthermore, a collation of published studies that reported child age at autism diagnosis suggested that across 35 studies, 5 years, or 60 months, was the average age 13.…”

Section: Introductionmentioning

confidence: 99%

“…A recent population-based cohort study in the USA reported that the incidence and timing of neurodevelopmental condition diagnoses varied by insurance type, with diagnoses made earlier for privately insured children, relative to publicly insured children. 12 Furthermore, a collation of published studies that reported child age at autism diagnosis suggested that across 35 studies, 5 years, or 60 months, was the average age. 13 The general lack of detailed patient-level information in these population studies makes it difficult to assess family and patient factors that contribute to delays in diagnostic assessments.…”

Section: Introductionmentioning

confidence: 99%

Diagnostic delay in children with neurodevelopmental conditions attending a publicly funded developmental assessment service: findings from the Sydney Child Neurodevelopment Research Registry

et al. 2023

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ObjectivesEarly developmental assessment is crucial for effective support and intervention. This study examined factors that contribute to (a) older child age when caregivers first became concerned about their child’s development and (b) older child age at the point of entry into developmental and diagnostic assessment. We also quantified how factors contributed to risk of children not receiving an assessment by 5 years and considered the acceptability of electronic data capture for families.DesignThis cross-sectional study collected information about caregiver developmental concerns, family history and child characteristics.SettingChildren and families entered a large, publicly funded hospital-based paediatric developmental assessment service.ParticipantsConsecutively enrolled children (N=916) aged 6 months to 17 years with neurodevelopmental concerns and their caregivers.Main outcomes and measuresA developmental history questionnaire completed by caregivers.ResultsThe average age that caregivers identified developmental concerns was 3.0 years of age but the average age of a receiving a developmental assessment was 6.6 years. Only 46.4% of children received a diagnostic assessment by 5 years of age, even though 88.0% of caregivers were concerned about their child’s development by that age. Parental age, relationship status, education level, prior use of support services and being from a culturally and linguistically diverse background contributed to age at identification of concern, age at diagnostic assessment and the likelihood of receiving a diagnostic assessment by 5 years. Electronic data capture had high acceptability, with 88.2% of caregivers reporting a preference for electronic completion of questionnaires.ConclusionsThe study shows a substantial delay in diagnostic assessments that leaves most vulnerable children without an assessment by school age and highlights contributors to delays. These delays highlight the complexity of delivering early intervention and support policies that rely on swift and appropriate developmental assessment to vulnerable families.

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“…For example, 2019 United States census data reveal that 4.3% of children under 18 have a disability (Young, 2021), and 2020-2021 United States special education data indicate that 15% of 3-to-21-year-olds receive services under the Individuals with Disabilities Education Act (National Center for Education Statistics, 2022). However, the percentage of children with NDDs reported from public or private insurance data is even higher [i.e., 23.9 and 11%, respectively (Straub et al, 2022)]. It would be helpful if our results could be easily interpreted within the available prevalence data, but similar to the reporting of disabilities within the assessment tools we reviewed, these data are also difficult to interpret and vary based on how disabilities are defined.…”

Section: Discussionmentioning

confidence: 93%

“…Neurodevelopmental disorders are common in the United States, with birth cohort data (n > 3.3 million children) reporting that by 8 years of age, 23.9% of publicly insured children and 11% of privately insured children had a diagnosis of one or more NDDs (Straub et al, 2022). NDDs include a range of conditions resulting from either a genetic or multifactorial etiology (i.e., a combination of genetic and environmental factors) that occur during the developmental period and that are characterized by delays in cognition, communication, behavior, and/or motor skills (American Psychiatric Association [APA], 2013;Van Herwegen et al, 2015;World Health Organization [WHO], 2019).…”

Section: Introductionmentioning

confidence: 99%

Inclusion of Individuals With Neurodevelopmental Disorders in Norm-Referenced Language Assessments

et al. 2022

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Standardized, norm-referenced language assessment tools are used for a variety of purposes, including in education, clinical practice, and research. Unfortunately, norm-referenced language assessment tools can demonstrate floor effects (i.e., a large percentage of individuals scoring at or near the lowest limit of the assessment tool) when used with some groups with neurodevelopmental disorders (NDDs), such as individuals with intellectual disability and neurogenetic syndromes. Without variability at the lower end of these assessment tools, professionals cannot accurately measure language strengths and difficulties within or across individuals. This lack of variability may be tied to poor representation of individuals with NDDs in normative samples. Therefore, the purpose of this study was to identify and examine common standardized, norm-referenced language assessment tools to report the representation of individuals with NDDs in normative samples and the range of standard/index scores provided. A systematic search identified 57 assessment tools that met inclusion criteria. Coding of the assessment manuals identified that most assessment tools included a “disability” or “exceptionality” group in their normative sample. However, the total number of individuals in these groups and the number of individuals with specific NDDs was small. Further, the characteristics of these groups (e.g., demographic information; disability type) were often poorly defined. The floor standard/index scores of most assessment tools were in the 40s or 50s. Only four assessment tools provided a standard score lower than 40. Findings of this study can assist clinicians, educators, and researchers in their selections of norm-referenced assessment tools when working with individuals with NDDs.

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Neurodevelopmental Disorders Among Publicly or Privately Insured Children in the United States

Cited by 39 publications

References 25 publications

Unmet Medical Needs and Food Insecurity in Children with Neurodevelopmental Disorders: Findings from the 2019 National Health Interview Survey (NHIS)

Unmet Medical Needs and Food Insecurity in Children with Neurodevelopmental Disorders: Findings from the 2019 National Health Interview Survey (NHIS)

Diagnostic delay in children with neurodevelopmental conditions attending a publicly funded developmental assessment service: findings from the Sydney Child Neurodevelopment Research Registry

Inclusion of Individuals With Neurodevelopmental Disorders in Norm-Referenced Language Assessments

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