Screening for Developmental Delays Among Young Children — National Survey of Children's Health, United States, 2007

Catherine E. Rice, PhD1

Kim Van Naarden Braun, PhD1

Michael D. Kogan, PhD2

Camille Smith, EdS1

Laura Kavanagh, MPP2

Bonnie Strickland, PhD2

Stephen J. Blumberg, PhD3

1Division of Birth Defects and Developmental Disabilities, National Center on Birth Defects and Developmental Disabilities, CDC

2Maternal and Child Health Bureau, Health Resources and Services Administration, Rockville, Maryland

3National Center for Health Statistics, CDC

Corresponding author: Catherine E. Rice, Division of Birth Defects and Developmental Disabilities, National Center on Birth Defects and Developmental Disabilities, CDC. Telephone: 404-498-3847; E-mail: crice@cdc.gov.

Introduction

Early childhood development typically follows a trajectory of achieving physical, cognitive, communication, social-emotional, and self-help milestones within a specified age range. Although most children reach these milestones within a similar range, others exhibit mild to severe developmental delays that indicate potential developmental disabilities. Developmental disabilities are a group of conditions caused by an impairment in one or more developmental domains (e.g., physical, learning, communication, behavior, or self-help). Developmental disabilities can become evident during the prenatal period through age 22 years, affect day-to-day functioning, and usually are lifelong (1). Approximately 15% of children aged 3–17 years in 2008 were estimated to have developmental disabilities of varying severity, such as language or learning disorders, intellectual disabilities, cerebral palsy, seizures, hearing loss, blindness, autism spectrum disorder* (ASD), or other developmental delays (2).

The causes of most developmental disabilities are unknown, and primary interventions are rare. Ongoing research seeks to clarify the etiologies. A current public health priority is to use early interventions to reduce, and ideally prevent, the occurrence and severity of long-term functional limitations (1). For children who have developmental delays, early interventions such as developmental behavioral therapies can improve development in many areas such as language and communication (3,4), cognitive (5), and social-emotional (5,6) areas. Families participating in early interventions are able to better meet their children's specific needs throughout their lives (7), and society benefits from a decreased need for later costly special education services (8). Despite the benefits of early intervention, many children's developmental delays are not identified early enough for the children to benefit optimally from these interventions. Only 2%–3% of all children receive public early intervention services by age 3 years, compared with approximately 15% who are estimated to have a developmental disability during childhood (9,10).

The process of early identification requires health-care providers to be aware of developmental milestones and implement informal and formal developmental probes as part of routine well-child checks. The use of validated developmental and behavioral screening tools, including questionnaires asking a parent or caregiver questions about the development of their child at specific ages (11,12) or when a concern exists, is important. Without routine screening, only an estimated 30% of children with developmental issues are identified before they reach kindergarten (13). Children at risk for delays who are screened are more likely to receive early intervention services than unscreened peers who are at high risk for delays (14). Parent-reported use of questionnaires for developmental screening by health-care providers has been reported to be 19.5% for children aged ≤5 years (14). Pediatricians have reported higher rates (47.7%) of use of a standardized developmental screening tool (15). However, rates increase to 80% when a focused effort is made to increase the use of developmental screening in pediatric practice (16).

A key example of the important role of public health in developmental screening and early identification of developmental disabilities is highlighted by an increase of 120% in the identified prevalence of ASD in multiple U.S. communities from 2002 to 2010 (17). The identified prevalence of ASD is estimated to be 1%–2% of children aged 3–17 years (17,18). Persons with ASD typically require substantial support throughout life, and early developmental behavioral therapy for young children with ASD can improve language, cognitive, and adaptive skills (19), with increased benefits from earlier and more intensive interventions (20). Parental or professional concerns about development in children with ASD are common before age 2 years; however, most children do not receive the diagnosis until after age 4 years (17). By age 3 years, only 44% of children identified with ASD had received a comprehensive evaluation, despite documentation of developmental concerns among 89% of the children. By age 8 years, 20% of children with ASD have not received a documented ASD diagnosis or special education classification (17). Although lack of a specific diagnosis does not necessarily preclude the child from receiving special support services, identification of a developmental delay or concern is essential for the family to receive appropriate interventions, and the diagnosis can help clarify the specific needs of the child.

Several national organizations and programs have developed guidelines and quality care indicators for early surveillance, screening, and identification of developmental concerns or delays. The American Academy of Pediatrics (AAP) recommends 1) developmental surveillance (also referred to as developmental monitoring) at every pediatric preventive care visit through the age of 5 years; 2) general developmental screening using a validated screening tool for all children at age 9, 18, and either 24 or 30 months; and 3) autism-specific screening for all children at 18 and either 24 or 30 months (21). This recommendation has been included in Bright Futures: Guidelines for Health Supervision of Infants, Children and Adolescents (22). The National Quality Forum (NQF) is a partnership of government and nongovernment agencies to set standards for improving the quality of health care. NQF has endorsed measures for developmental screening for children from birth through age 5 years (NQF #1385, #1399, and #1448) as indicators of effective and timely population health services (23). In addition, Healthy People 2020 includes an objective of the percent of children aged 10–35 months who are screened for an ASD and other developmental delays within the previous year (objective MICH-29.l) (24).

The reports in this supplement provide the public and stakeholders responsible for infant, child, and adolescent health (including public health practitioners, parents or guardians and their employers, health plans, health professionals, schools, child care facilities, community groups, and voluntary associations) with easily understood and transparent information about the use of selected clinical preventive services that can improve the health of infants, children, and adolescents. The topic in this report is one of 11 topics selected on the basis of existing evidence-based clinical practice recommendations or guidelines for the preventive services and availability of data system(s) for monitoring (25). This report analyzes 2007 data from the National Survey of Children's Health (NSCH) to estimate the percentage of children aged 10–47 months who were screened for developmental disabilities based on parental reports of physician ordered, parent-completed questionnaires and those who were monitored according to parental reports of physicians asking about parental concerns. The focus on parent-completed developmental questionnaires corresponds with the AAP recommendations and evidence supporting the validity of parent-reported developmental screening (12,13,22). Public health professionals and clinicians can use these data to identify population groups that might require additional strategies to access developmental screening preventive services.

Methods

CDC analyzed 2007 data from NSCH to estimate the prevalence of physician-ordered developmental screening completed by a parent (referred to as developmental screening—parent-completed, or DS-PC) and the prevalence of parents reporting that a physician or health-care provider asked whether they had any concerns about their child's learning (referred to as developmental monitoring by a health-care provider, or DM-HCP) in the past 12 months for children aged 10–47 months. NSCH is conducted by CDC as part of the State and Local Area Integrated Telephone Survey, with funding and direction from the Maternal and Child Health Bureau of the Health Resources and Services Administration (HRSA) (26). NSCH is a random-digit–dial survey that provides national and state-specific information on the health and well-being of children aged <18 years based on interviews with a parent or guardian (referred to as parents in this report). Within each household, one child was randomly selected to be the subject of the interview. Interviews were completed during April 2007–July 2008 for 91,642 children. The overall interview completion rate was 66.0%, and the overall response rate (denominator includes telephone calls that were not answered) was 46.7%. All estimates from NSCH are adjusted for nonresponse and weighted to represent the noninstitutionalized civilian U.S. population of children. Although 2011–2012 NSCH data were available for analysis, 2007 data were analyzed because they represent baseline estimates before the implementation of most national health-care reform provisions.

NSCH records the age of the child in months for children aged <24 months and in years for children aged 2–17 years. Data were analyzed for children aged 10 months through 3 years (up to 47 months). The resulting age range of 10–47 months (n = 13,485) corresponds to the AAP developmental screening guidelines and the Healthy People 2020 objective MICH-29.1 (24). A child was considered to have received a parent-completed developmental screening (DS-PC) if the parent answered "yes" to three age-specific questions designed to capture the use of a standardized screening tool about their child's developmental, communication, or social behaviors (27). To measure DS-PC, participants from the 2007 NSCH (regarding children aged 10–71 months) were asked, "Sometimes a child's doctor or other health-care provider will ask a parent to fill out a questionnaire at home or during their child's visit. During the past 12 months, did a doctor or other health-care provider have you fill out a questionnaire about specific concerns or observations you may have about (Specific Child)'s developmental, communication or social behaviors?" If their response was "yes," participants were asked two follow-up questions depending on the child's age. For children aged 10–23 months: "Did this questionnaire ask about your concerns or observations about how (Specific Child) talks or makes speech sounds?" and "Did this questionnaire ask about your concerns or observations about how (Specific Child) interacts with you and others?" For children aged 24–71 months: "Did this questionnaire ask about your concerns or observations about words and phrases (Specific Child) uses and understands?" and "Did this questionnaire ask about your concerns or observations about how (Specific Child) behaves and gets along with you and others?" The survey also included a more general question about developmental monitoring. A child was considered to have received developmental monitoring (DM-HCP) if parents reported that a physician or health-care provider asked whether they had any concerns about their child's learning, development, or behavior. To measure developmental surveillance (monitoring), participants from the 2007 NSCH (regarding children aged 10–71 months) were asked, "During the past 12 months did (Specific Child)'s doctors or other health care providers ask you if you have concerns about [his/her] learning, development, or behavior?" Demographic variables, the child's health status, insurance adequacy and coverage, availability of a medical home, and concerns about development were based on parent report according to NSCH 2007 definitions (26). Region and metropolitan statistical area status were based on U.S. Census Bureau definitions (28). Data were analyzed using statistical software to account for the complex sample design, and 95% confidence intervals were calculated. Two-tailed chi-square tests were used to assess differences in receipt of DS-PC by demographic, health-care, and concern variables. Differences were considered significant at p<0.05.

Results

In 2007, parents of 21.1% of children aged 10–47 months reported that they had been asked to fill out a questionnaire by a health-care provider about their child's developmental, communication, or social behaviors (DS-PC) in the past 12 months (Table 1). The percentage screened was significantly higher (22.6%) for the youngest (10–35 months) age group, children whose primary language in the household was English (21.9%) (p<0.05), and in the South (24.5%; p<0.01) compared with their respective groups. No statistically significant differences were found by sex, race or ethnicity, family structure, parental education, household income, or metropolitan statistical area. Children with special health-care needs (29.4%) and those reported to have at least one of the 16 chronic conditions (27.6%) were screened more frequently than those without special health-care needs (20.1%) or none of the 16 conditions (20.3%; p<0.01) (Table 2). DS-PC was lowest among children reported to have had no insurance in the past year (9.0%; p<0.01), without a medical home (18.8%; p<0.05), and who were not receiving family-centered care (16.9%; p<0.01). No statistically significant differences were found based on ratings of the child's health insurance source (public or nonpublic only).

Although the prevalence of formal DS-PC was low (21.1%), a much higher percentage (52.3%) of children were reported to have health-care providers who engaged in developmental monitoring by informally asking about parental concerns about the child's learning, development, or behavior (DM-HCP) (Table 3). Either DS-PC or DM-HCP monitoring was reported for 42.7% of the children, both DS-PC and DM-HCP were reported for 15.4%, and neither type of monitoring was reported for 42.0% of children. Reports of DS-PC or DM-HCP were similar regardless of the parent report of concerns or risk for developmental delay.

Discussion

The results in this report indicate that despite recommendations that all children be screened for developmental delays by health-care providers at 9, 18, and either 24 or 30 months and for ASD at 18 and either 24 or 30 months (22), the parents of only 21.1% of children aged 10–47 months reported in 2007 that they were asked by a health-care provider to complete a developmental screening tool concerning their child's development in the past year. The prevalence of physician-ordered, parent-completed developmental screening was low regardless of demographic, health-care, or risk indicators. Developmental monitoring was reported for 52.3% of children in the past year, indicating that health-care providers are more likely to use informal discussions and questions about parental concerns related to learning, development, or behavior than they are to use parent-report questionnaires. However, indications of a parental concern or risk for a developmental delay did not result in additional screening for those children. This type of informal monitoring is less likely to result in appropriate identification of children with developmental delays (9). As of 2007, only one in five children were reported to have met national standards for quality health care specified by NQF targeted by Healthy People 2020 for universal developmental screening of all young children in pediatric health-care settings.

Potential reasons for the low percentage of requests from health-care providers for parents to complete developmental screening questionnaires include overreliance by health-care providers on their own clinical judgment, limited trust in parental report, and use of informal checklists rather than validated screening tools (9,29). Despite parent reports of infrequent developmental screening, almost half (47.7%) of pediatricians report using a standardized developmental screening tool (15). Although the difference between parents and pediatricians in reporting developmental screening might reflect the use of other, less common developmental screening methods among physicians (e.g., examination or interview), this difference also might indicate the need for improved communication between health-care professionals and caregivers when developmental screening is actually occurring. Pediatric health-care providers cite lack of time, cost, reimbursement uncertainty, insufficient training, overidentification concern, and limited knowledge or availability of referral options for follow-up assessments and services as concerns related to incorporating developmental screening into their practice (9,29,30). Physicians who initiate screening should be prepared to act (i.e., provide a referral) if a concern is identified during the screening process; a referral for early intervention might be unnecessarily deferred if a physician waits for formal diagnostic results (31). Because a diagnosis is not a requirement for referral for certain services and supports, including those covered under the Individuals with Disabilities Education Act, referral options might not be as limited as pediatricians believe (32). Several studies have shown that validated screening tools are an effective means of identifying children who are likely to have developmental delays and that approximately 70% of children whose screening results indicate a concern for a developmental disorder but do not meet the criteria for a specific delay still have substantial developmental delays that necessitate support services (33). Parent-report screening tools can provide valid and reliable screening information and are cost-effective with minimal added administration costs (11,33,34). In addition, several studies have shown that perceived barriers can be successfully addressed and that integration of quality developmental screening in pediatric practices is feasible (15,35).

Programs are underway that might increase the use of developmental and ASD screening in health-care settings (29). These efforts include public health programs such as CDC's "Learn the Signs. Act Early." program to improve awareness of typical child developmental milestones and indicators of developmental concern and encourage parents, health-care providers, and early educators to engage in developmental monitoring (36). CDC, HRSA, the Association for University Centers on Disabilities, and the Association of Maternal and Child Health Programs have worked together to support Act Early Initiatives, including state plans, personnel training, and programs to improve early identification (37). HRSA and AAP also supports efforts such as the Bright Futures Guidelines to prepare health professionals to use valid and reliable screening tools and develop systems of care that screen early, link to services, and develop medical homes for children with ASD and other developmental disabilities (38). Early identification and linkage to appropriate services and support services is a process that requires developmental monitoring and screening at key points during childhood development; however, these activities should occur in the context of a medical or health home (39). This position is reflected in programs such as Bright Futures and others that involve coordinated systems of care, such as Project LAUNCH projects aimed at improving service systems for the health and well-being of young children (40).

Integrating developmental monitoring and screening as components in electronic health records offers the opportunity to increase accessibility and use of these important tools for improving early identification (41). To date, the NQF health-care quality clinical measures for screening have been endorsed but have not been approved for the staged integration into electronic health records (42). The cost of screening tools and the permissions needed to integrate them into electronic systems present barriers to routine clinical use. Because of these challenges, public-domain screeners that have been well-validated in the general population could be used to address some of these challenges. Meanwhile, access to disability and behavioral services is expanding in the health-care field. For example, in 2012, the Office of Personnel Management reclassified Applied Behavior Analysis for children with ASD from an educational intervention to an approved medical therapy that can be covered under the federal employee health benefits program (42). However, access and coverage of developmental behavioral health interventions vary substantially based on state interpretation of the essential health benefits (43).

Ongoing changes in the U.S. health-care system offer opportunities to improve the use of clinical preventive services among infants, children, and adolescents. The Patient Protection and Affordable Care Act of 2010 (as amended by the Health Care and Education Reconciliation Act of 2010 and referred to collectively as the Affordable Care Act [ACA]) expands insurance coverage, consumer protections, and access to care and places a greater emphasis on prevention (44). As of September 23, 2010, ACA § 1001 requires nongrandfathered private health plans to cover, with no cost-sharing, a collection of four types of clinical preventive services, including 1) recommended services of the U.S. Preventive Services Task Force graded A (strongly recommended) or B (recommended) (45); 2) vaccinations recommended by the Advisory Committee on Immunization Practices (46); 3) services adopted for infants, children, and adolescents under the Bright Futures guidelines supported by HRSA and AAP (22) and those developed by the Discretionary Advisory Committee on Heritable Disorders in Newborns and Children (47); and 4) women's preventive services as provided in comprehensive guidelines supported by HRSA (48). The Bright Futures guidelines recommend developmental monitoring and screening at multiple points as the child ages, including developmental monitoring from birth through age 21 years and developmental screening when the child is aged 9, 18, and either 24 or 30 months (21). State Medicaid programs cover developmental monitoring and screening as part of the Early and Periodic Screening, Diagnostic, and Treatment benefit.

The Health Insurance Marketplace (or Health Insurance Exchange) began providing access to private health insurance for small employers and to persons and families interested in exploring their options for coverage, with policies taking effect as early as January 2014.* Federal tax credits are available on a sliding scale to assist those living at 100%–400% of the federal poverty level who purchase health insurance through the Marketplace (ACA § 1401). Insurance plans sold on the Marketplace must cover the four types of recommended clinical preventive services without cost-sharing, including developmental monitoring and screening.

The analysis in this report includes the use of a large, nationally representative population sample from NSCH to provide an estimate for developmental screening and monitoring before passage of ACA in 2010. Updated estimates from the 2011–2012 NSCH indicate some increases in developmental screening; however, many children are not receiving screening (27).

Limitations

The findings in this report are subject to at least five limitations. First, NSCH excludes children who live in institutions, although this accounts for a small proportion of children (28). Second, responses are likely to be subject to coverage and nonresponse biases because NSCH contacts respondents using landline telephones rather than cellular telephones. Third, the estimates are based on parental report and are subject to recall bias and differential interpretation of the questions. Fourth, separate screening rates for ASD and developmental delays were not reported because questions regarding diagnosis of an ASD or other developmental delay were only applicable to children aged >2 years, and children with undiagnosed conditions were not identified. Finally, because age is recorded in years rather than months for children aged ≥2 years, responses to the question about whether the child has been screened in the past 12 months do not allow for analyses that match the specific ages of the AAP screening recommendations. However, the sample of children aged 10–47 months in the study includes the appropriate AAP and Healthy People 2020 age ranges for recommended developmental screening.

Conclusion

Early identification of developmental delays among young children is an important first step in providing the opportunity for children to receive early intervention services to increase functional skills. Parents of 21% of children reported being asked to complete a questionnaire about their child's development, indicating low use of validated screening tools. Although parents of twice as many children were informally asked about concerns they might have had about their child's learning, development, or behavior, this type of informal monitoring is less likely to result in appropriate identification of children with developmental delays. Substantial opportunities exist to help monitor the development of children in the United States, such as the use of protocols for developmental monitoring and the use of validated developmental screening tools as part of coordinated systems of health care.

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