Michelle M. Macias

Identifying infants and young children with developmental disorders in the medical home: An algorithm for developmental surveillance and screening

Early identification of developmental disorders is critical to the well-being of children and their families. It is an integral function of the primary care medical home and an appropriate responsibility of all pediatric health care professionals. This statement provides an algorithm as a strategy to support health care professionals in developing a pattern and practice for addressing developmental concerns in children from birth through 3 years of age. The authors recommend that developmental surveillance be incorporated at every well-child preventive care visit. Any concerns raised during surveillance should be promptly addressed with standardized developmental screening tests. In addition, screening tests should be administered regularly at the 9-, 18-, and 30-month visits. (Because the 30-month visit is not yet a part of the preventive care system and is often not reimbursable by third-party payers at this time, developmental screening can be performed at 24 months of age. In addition, because the frequency of regular pediatric visits decreases after 24 months of age, a pediatrician who expects that his or her patients will have difficulty attending a 30-month visit should conduct screening during the 24-month visit.) The early identification of developmental problems should lead to further developmental and medical evaluation, diagnosis, and treatment, including early developmental intervention. Children diagnosed with developmental disorders should be identified as children with special health care needs, and chronic-condition management should be initiated. Identification of a developmental disorder and its underlying etiology may also drive a range of treatment planning, from medical treatment of the child to family planning for his or her parents.

Care coordination in the medical home: Integrating health and related systems of care for children with special health care needs

Care coordination is a process that facilitates the linkage of children and their families with appropriate services and resources in a coordinated effort to achieve good health. Care coordination for children with special health care needs often is complicated because there is no single point of entry into the multiple systems of care, and complex criteria frequently determine the availability of funding and services among public and private payers. Economic and sociocultural barriers to coordination of care exist and affect families and health care professionals. In their important role of providing a medical home for all children, primary care physicians have a vital role in the process of care coordination, in concert with the family.

Fragile X syndrome and deletions in FMR1: New case and review of the literature

The fragile X syndrome phenotype of mental retardation is almost always caused by abnormal CGG trinucleotide amplification within the FMR1 gene. Occasionally fragile X syndrome results from point mutations or deletions within or around the FMR1 locus. We have identified a mentally retarded African American male with typical fragile X phenotype and a 300-400 base pair intragenic deletion near the CGG repeat segment, present in his peripheral blood lymphocytes with no apparent mosaicism. His mother, who is not retarded, has a full FMR1 CGG expansion mutation with 700-900 repeats. A review of 23 published cases with FMR1 gene deletions shows full FMR1 mutation in the mother of only 1 other propositus, a male with FMR1 full mutation/premutation/deletion mosaicism of his cultured skin fibroblasts and peripheral blood lymphocytes. The various deletions within FMR1 and their clinical significance are reviewed.

The Child Development Inventory: A developmental outcome measure for follow-up of the high-risk infant.

OBJECTIVE To examine the validity of the Child Development Inventory (CDI) compared with other commonly used measures of developmental outcomes in high-risk infants. STUDY DESIGN Primary caregivers of 63 toddlers and preschoolers enrolled at a routine neonatal high-risk follow-up clinic completed a CDI describing their children. Only those with successfully completed CDIs were included in the analysis (n = 43). The CDI General Development Developmental Quotient was compared with the Clinical Adaptive Test/Clinical Linguistic and Auditory Milestone Scale (CAT/CLAMS) and the Bayley Scales of Infant Development, 2nd Edition (BSID-II). RESULTS Significant correlations were found between the CDI, the CAT/CLAMS (r =.87, P <.001), and the BSID-II (r =.86, P <.001). There were no significant correlations between the CDI and parent education and income. Findings revealed high sensitivity (80% to 100%) and specificity (94% to 96%) for the CDI. CONCLUSION The CDI appears to be a useful and cost-effective screening measure for determining developmental outcomes among high-risk infants.

Promoting Optimal Development: Screening for Behavioral and Emotional Problems

By current estimates, at any given time, approximately 11% to 20% of children in the United States have a behavioral or emotional disorder, as defined in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Between 37% and 39% of children will have a behavioral or emotional disorder diagnosed by 16 years of age, regardless of geographic location in the United States. Behavioral and emotional problems and concerns in children and adolescents are not being reliably identified or treated in the US health system. This clinical report focuses on the need to increase behavioral screening and offers potential changes in practice and the health system, as well as the research needed to accomplish this. This report also (1) reviews the prevalence of behavioral and emotional disorders, (2) describes factors affecting the emergence of behavioral and emotional problems, (3) articulates the current state of detection of these problems in pediatric primary care, (4) describes barriers to screening and means to overcome those barriers, and (5) discusses potential changes at a practice and systems level that are needed to facilitate successful behavioral and emotional screening. Highlighted and discussed are the many factors at the level of the pediatric practice, health system, and society contributing to these behavioral and emotional problems.

Adding Insult to Injury: Bullying Experiences of Youth With Attention Deficit Hyperactivity Disorder

This study tested the hypothesis that self-reported bullying and peer victimization in pediatric populations (n = 238) diagnosed with attention deficit hyperactivity disorder (ADHD) would exceed that of peers with no diagnosis. Higher rates of victimization were reported by the youth with ADHD, but bullying rates were comparable for youth with ADHD and peers. Results suggest that students diagnosed with ADHD are at significantly higher risk for peer victimization, and its psychological impact on youth with ADHD who experience bullying—as victims, perpetrators, or both—are more likely to show psychosocial problems above and beyond their attention and social competence difficulties.

Caretaker Perception of Child Vulnerability Predicts Behavior Problems in NICU Graduates

This study explores parental perception of child vulnerability (PPCV) and parent overprotection (POP) and their relationship to neonatal medical problems, child development and behavior. Participants included 90 lower income parents of NICU graduates ages 22–81 months consecutively enrolled at a high-risk neonatal developmental follow-up clinic. Parents completed the Child Vulnerability Scale (CVS), the Parent Protection Scale (PPS) and the Child Behavior Checklist (CBCL) regarding their children. Step-wise regression analysis revealed the CVS as the sole predictor of child behavior, accounting for 13% of the variance in the CBCL Total T-score (R2 = .13,

Infant screening : The usefulness of the Bayley Infant Neurodevelopmental Screener and the Clinical Adaptive Test/Clinical Linguistic Auditory Milestone Scale

be = .86, p < .006). Neonatal medical problems, Child DQ, and most parental demographic variables did not correlate with CVS or PPS scores. A significant correlation between CVS and the separation subscale of the PPS was noted (r = .31, p < .01). We conclude that NICU graduates perceived vulnerable by their caretakers have significant behavioral difficulties compared to those perceived as not vulnerable. Future research should address early parental antecedents of PPCV, the persistence of PPCV, and its effects on behavioral outcomes.

Enhancing the Algorithm for Developmental–Behavioral Surveillance and Screening in Children 0 to 5 Years

&NA; We assessed the usefulness of the Bayley Infant Neurodevelopmental Screener (BINS) and the Clinical Adaptive Test/Clinical Linguistic Auditory Milestone Scale (CAT/CLAMS) for screening high‐risk infant populations in a sample of 78 infants followed after premature birth and/or perinatal insults. Both measures were highly correlated with the Bayley Scales of Infant Development‐II, but sensitivity and specificity analyses revealed disparities related to the tests administered and the cutoffs used. The BINS had optimal sensitivity (true positives) of 90% when referral was made for a BINS score of high or moderate. The CAT/CLAMS had excellent specificity (true negatives) of 95% to 98% but poor sensitivity (5%‐36%). Until the cutoff issue can be clarified, clinicians should be cautious in using the CAT/CLAMS as the primary screening instrument in settings in which early identification of infants with developmental problems is the main goal.

Anxiety disorders in children and adolescents

Objective: To determine if the 2006 American Academy of Pediatrics developmental surveillance and screening algorithm is adequate or if revisions are needed. Methods: A comprehensive literature search was conducted to investigate a clinician’s ability to perform developmental—behavioral surveillance in children 0 to 5 years. Results: Even when a broad-band developmental screen is typical, pediatricians should refer when they confidently suspect a delay but be far more suspicious about children who seem asymptomatic. Periodic screening enhances surveillance by improving early detection and early intervention (EI) eligibility rates. Nevertheless, children with concerning screens are not consistently referred and interlinked to EI. Once referred, approximately half are deemed EI-ineligible, even though they typically perform well below average and have numerous, predictive academic and psychosocial risk factors. Meanwhile, clinicians struggle with tracking at-risk children. Conclusion: Revisions are needed to optimize early detection, prevention, and monitoring. Greater emphasis is needed on developmental—behavioral promotion and referral care coordination.