A Quality Improvement Network for Interdisciplinary Training in Developmental Disabilities.

Children with developmental disabilities (DD), such as autism spectrum disorder (ASD), have complex health and developmental needs that require multiple service systems and interactions with various professionals across disciplines. The growing number of children and youth identified with ASD or DD, including anxiety and depression, has increased demand for services and need for highly qualified pediatric providers. Federally funded Leadership Education in Neurodevelopmental and related Disabilities (LEND) programs across the United States address today's health care shortages by providing comprehensive, interdisciplinary training to providers from multiple pediatric disciplines who screen, diagnose, and treat those with ASD and DD. Each LEND program develops training methods independently, including quality improvement efforts. In 2014, LEND programs began designing and validating common measures to evaluate LEND training. The LEND Program Quality Improvement (LPQI) Network was established in 2016. Participating LEND programs in the LPQI Network administer validated trainee self-report and faculty-observation measures that address skills in key competency domains of Interdisciplinary or Interprofessional Team Building, Family-Professional Partnerships, and Policy. This study reports data from faculty and trainees from 22 LEND programs that participated in the LPQI Network across the 5-year data collection period. The main outcome of this study was the change in trainee knowledge, skills, and attitudes scores in key competency domains across programs. Overall, trainees made significant knowledge, skills, and attitude gains based on both self-report and faculty observation scores for all 3 competency domains. Data demonstrate the value of LEND programs and feasibility of a national quality improvement approach to evaluate interdisciplinary training and systems-level improvement.

Evidence-Informed Milestones for Developmental Surveillance Tools.

The Centers for Disease Control and Prevention's (CDC) Learn the Signs. Act Early. program, funded the American Academy of Pediatrics (AAP) to convene an expert working group to revise its developmental surveillance checklists. The goals of the group were to identify evidence-informed milestones to include in CDC checklists, clarify when most children can be expected to reach a milestone (to discourage a wait-and-see approach), and support clinical judgment regarding screening between recommended ages. Subject matter experts identified by the AAP established 11 criteria for CDC milestone checklists, including using milestones most children (≥75%) would be expected to achieve by specific health supervision visit ages and those that are easily observed in natural settings. A database of normative data for individual milestones, common screening and evaluation tools, and published clinical opinion was created to inform revisions. Application of the criteria established by the AAP working group and adding milestones for the 15- and 30-month health supervision visits resulted in a 26.4% reduction and 40.9% replacement of previous CDC milestones. One third of the retained milestones were transferred to different ages; 67.7% of those transferred were moved to older ages. Approximately 80% of the final milestones had normative data from ≥1 sources. Social-emotional and cognitive milestones had the least normative data. These criteria and revised checklists can be used to support developmental surveillance, clinical judgment regarding additional developmental screening, and research in developmental surveillance processes. Gaps in developmental data were identified particularly for social-emotional and cognitive milestones.

Promoting Optimal Development: Identifying Infants and Young Children With Developmental Disorders Through Developmental Surveillance and Screening.

Early identification and intervention for developmental disorders are critical to the well-being of children and are the responsibility of pediatric professionals as an integral function of the medical home. This report models a universal system of developmental surveillance and screening for the early identification of conditions that affect children's early and long-term development and achievement, followed by ongoing care. These conditions include autism, deafness/hard-of-hearing, intellectual and motor disabilities, behavioral conditions, and those seen in other medical conditions. Developmental surveillance is supported at every health supervision visit, as is as the administration of standardized screening tests at the 9-, 18-, and 30-month visits. Developmental concerns elicited on surveillance at any visit should be followed by standardized developmental screening testing or direct referral to intervention and specialty medical care. Special attention to surveillance is recommended at the 4- to 5-year well-child visit, prior to entry into elementary education, with screening completed if there are any concerns. Developmental surveillance includes bidirectional communication with early childhood professionals in child care, preschools, Head Start, and other programs, including home visitation and parenting, particularly around developmental screening. The identification of problems should lead to developmental and medical evaluations, diagnosis, counseling, and treatment, in addition to early developmental intervention. Children with diagnosed developmental disorders are identified as having special health care needs, with initiation of chronic condition management in the pediatric medical home.

Young Children with Attention-Deficit/Hyperactivity Disorder and/or Disruptive Behavior Disorders Are More Frequently Prescribed Alpha Agonists Than Stimulants.

Objective: To examine medication prescribing patterns for preschool-aged children with diagnoses of attention-deficit/hyperactivity disorder (ADHD) and/or disruptive behavior disorder (DBD). Secondary objectives included determining if prescription patterns varied by gender, insurance type, or comorbid diagnosis of autism spectrum disorder (ASD). Methods: A retrospective, cross-sectional chart review was completed for children ages 2-5 years who were treated at an academic medical center between 2013 and 2016 with a diagnosis of ADHD and/or DBD. Data were analyzed by Fisher's exact and chi-square tests and Cochran-Armitage trend analysis. Results: Of the 966 children who met inclusion criteria, 343 (35.5%) were prescribed ADHD medications. For 2-, 3-, and 4-year olds, the most commonly prescribed medication was an alpha agonist (AA), while for 5-year olds, methylphenidate (MPH) was most commonly prescribed. With advancing age, an increasing number of children were prescribed a stimulant medication and a decreasing number of children were prescribed an AA (p < 0.001). Children were more often prescribed an MPH formulation (48.2%) compared with amphetamine-based stimulants (26.8%). Children without ASD were more likely to be prescribed a stimulant medication (72.1%) when compared with children with ASD (37.0%, p < 0.0001). Children with private insurance were more likely to be prescribed an extended-release stimulant medication when compared with Medicaid patients (34.3% vs. 17.2%, p = 0.004). Conclusion: Both stimulants and nonstimulants are being prescribed regularly in very young children, even before the age of four at an academic medical center. AAs were the most commonly prescribed medication for children 2, 3, and 4 years of age with diagnoses of ADHD, DBD, and ASD. Insurance type, comorbid diagnosis of ASD, and age of child were found to be significantly associated with prescribing a nonpreferred medication.

Increasing Early Childhood Screening in Primary Care Through a Quality Improvement Collaborative.

OBJECTIVES: Multiple early childhood screenings are recommended, but gaps persist in implementation. Our aim for this project was to improve screening, discussion, referral, and follow-up of development, autism spectrum disorder (ASD), maternal depression, and social determinants of health (SDoH) to 90% by July 2018. METHODS: This 1-year national quality improvement collaborative involved 19 pediatric primary care practices. Supported by virtual and in-person learning opportunities, practice teams implemented changes to early childhood screening. Monthly chart reviews were used to assess screening, discussion, referral, and follow-up for development, ASD, maternal depression, and SDoH. Parent surveys were used to assess parent-reported screening and referral and/or resource provision. Practice self-ratings and team surveys were used to assess practice-level changes. RESULTS: Participating practices included independent, academic, hospital-affiliated, and multispecialty group practices and community health centers in 12 states. The collaborative met development and ASD screening goals of >90%. Largest increases in screening occurred for maternal depression (27% to 87%; +222%; P < .001) and SDoH (26% to 76%; +231%; P < .001). Statistically significant increases in discussion of results occurred for all screening areas. For referral, significant increases were seen for development (53% to 86%; P < .001) and maternal depression (23% to 100%; P = .008). Parents also reported increased screening and referral and/or resource provision. Practice-level changes included improved systems to support screening. CONCLUSIONS: Practices successfully implemented multiple screenings and demonstrated improvement in subsequent discussion, referral, and follow-up steps. Continued advocacy for adequate resources to support referral and follow-up is needed to translate increased screening into improved health outcomes.

Trends in Pediatricians' Developmental Screening: 2002-2016.

BACKGROUND: Current guidelines from the American Academy of Pediatrics recommend screening children for developmental problems by using a standardized screening tool and referring at-risk patients to early intervention (EI) or subspecialists. Adoption of guidelines has been gradual, with research showing many children still not being screened and referred. METHODS: We analyzed American Academy of Pediatrics Periodic Survey data from 2002 (response rate = 58%; N = 562), 2009 (response rate = 57%; N = 532), and 2016 (response rate = 47%, N = 469). Surveys included items on pediatricians' knowledge, attitudes, and practices regarding screening and referring children for developmental problems. We used descriptive statistics and a multivariable logistic regression model to examine trends in screening and referral practices and attitudes. RESULTS: Pediatricians' reported use of developmental screening tools increased from 21% in 2002 to 63% in 2016 (P < .001). In 2016, on average pediatricians reported referring 59% of their at-risk patients to EI, up from 41% in 2002 (P < .001), and pediatricians in 2016 were more likely than in 2002 to report being "very likely" to refer a patient with global developmental delay, milestone loss, language delay, sensory impairment, motor delays, and family concern to EI. CONCLUSIONS: Pediatricians' reported use of a standardized developmental screening tool has tripled from 2002 to 2016, and more pediatricians are self-reporting making referrals for children with concerns in developmental screening. To sustain this progress, additional efforts are needed to enhance referral systems, improve EI programs, and provide better tracking of child outcomes.

Parental depressive symptoms: relationship to child development, parenting, health, and results on parent-reported screening tools.

OBJECTIVE: To determine whether parents with depressive symptoms can accurately complete parent-reported developmental screens, and to explore effects of parental depressive symptoms on perceptions of children's health and parenting behaviors. STUDY DESIGN: A total of 382 parent-child (ages 0 to 2 years) dyads from pediatric sites across 17 U.S. states were evaluated with the directly administered and parent-reported Brigance Infant Toddler Screen, the Brigance Parent-Child Interactions Scale, a child development and health rating scale, and a caretaker depression screen. Groups were compared by parental status by depression screening. RESULTS: Fifteen percent of parents had positive scores on screening for depression. Parents with a positive screen result for depression were twice as likely to rate their children as below average or average and to perceive health problems in their children. Their children were 1.7 times more likely to perform below Brigance Screen cutoffs. Parents with a positive screen result for depression were as accurate as parents with a negative screen result for depression in identifying delayed or average development but were significantly less likely to rate their above-average children as such and reported fewer positive parenting practices. CONCLUSION: Parents with a positive depression screen result were as accurate in identifying developmental problems as parents with a negative depression screen result. Parental depressive symptoms are negatively associated with parenting behaviors, parental perspective on health and development, and child outcomes, which supports screening for depression and intervening promptly.

Services for children and adolescents with autism spectrum disorders: payment issues.

Primary care physicians have an important role in assuring that children with autism are identified as early as possible and have a medical home providing appropriate care and care coordination. Understanding efficient methods of care and modifying practice habits to minimize services not currently supported by procedural codes will permit the primary clinician to be paid for this medical care. Current medical procedure codes can be legitimately used to bill for care related to developmental and behavioral health needs and consistent use of these codes will help address payment barriers.

Can a broadband developmental-behavioral screening test identify children likely to have autism spectrum disorder?

Because services for children with autism spectrum disorder (ASD) are scarce, when children fail a broadband screening measure, providers need to carefully discern which children need ASD evaluations and which do not. This research considers how well a broadband screening test sorts those with and without probable ASD. The subjects were 427 children between 18 and 59 months of age with elevated risk scores on broadband screening, ie, Parents' Evaluation of Developmental Status (PEDS), a 10-item measure eliciting parents' concerns. Parents also completed the Modified Checklist of Autism in Toddlers (M-CHAT), an autism specific screen. The results showed that of the 427 children at risk on PEDS, 34% (N = 144) passed the M-CHAT. To determine whether these potential overreferrals could be reduced, parents' concerns on PEDS were used to predict M-CHAT results. Three or more discrete types of concerns, varying by age, characterized children who failed the M-CHAT while fewer than 3 were associated with passing. This reduced overreferrals by 70% while maintaining high levels of sensitivity (81%). Although compliance with the American Academy of Pediatrics recommendations for both broadband and autism-specific screening at 18 and 24 months is still recommended, viewing performance patterns on a broadband screening test can substantially reduce overreferrals to autism specialty services.

Toileting concerns, parenting stress, and behavior problems in children with special health care needs.

This study examined the relationship between toileting concerns, behavior problems, and parenting stress in parents of children with special health care needs (CSHCN). Participants included parents of 99 males and 71 females aged 4 to 12 years with neural tube defects (NTD), developmental-behavioral disabilities (DBD), or history of perinatal intraventricular hemorrhage (IVH). Parents completed the Achenbach Child Behavior Checklist (CBCL) and the Parenting Stress Index-Short Form (PSI-SF). Parents expressing toileting concerns on the CBCL reported significantly more personal distress and more externalizing problems versus those with continent children. Variation within subsamples suggested that expectations based on nature of disability may be a factor in parent adjustment. Direct assessment and intervention of toileting issues should be a high priority in secondary stress prevention with CSHCN and their families.

Age-related parenting stress differences in mothers of children with spina bifida.

This study examined whether ages of child and parent were risk factors for general parenting stress and disability-specific stress in families of children with spina bifida. Parents of 64 children with spina bifida completed the Parenting Stress Index-Short Form, Parents of Children with Disabilities Inventory, and measures of family support and resources. Scores of families with children under 6 years (preschool) versus 6- to 12-yr.-old children (school age) were compared, as were scores of mothers above or below Age 35. Parents of school-aged children reported significantly higher stress on the Concerns for the Child domain of the Parents of Children with Disabilities Inventory. Mothers over 35 tended to report higher stress in the Concerns for the Child and Medical/Legal Concerns domains of the Parents of Children with Disabilities Inventory. No associations with medical severity, socioeconomic status, family resources, or family support were detected. As the children age and disability-related differences become more apparent, the same level of functioning and severity of disability may be associated with additional parenting stress. Older mothers and those with school-age children may need more resources than current social support systems typically provide.

Ostracism in pediatric populations: review of theory and research.

Ostracism, ignoring and excluding a target individual, has recently emerged as one of the more common and damaging forms of social exchange. This article reviews the theoretical and empirical foundations of ostracism and its impact on the targeted individual, especially threats to the fundamental psychological needs of belonging, self-esteem, meaningful existence, and sense of control. Ostracism in children and adolescents is under-researched compared to bullying in general, in both the general youth population and in populations of children and youth with special health care needs (CYSHCN). Basic and applied studies on ostracism and its impact are reviewed with special emphasis on recent findings about ostracism in CYSHCN. Evidence is presented that ostracism may pose an even greater threat to children's adjustment and need-threat levels than bullying. Resources for clinician and researcher engagement in this emerging area are provided.

The Effects of Early Neglect on Cognitive, Language, and Behavioral Functioning in Childhood.

OBJECTIVES: Few studies have explored the impact of different types of neglect on children's development. Measures of cognition, language, behavior, and parenting stress were used to explore differences between children experiencing various forms of neglect, as well as to compare children with and without a history of early neglect. METHODS: Children, ages 3 to 10 years with a history of familial neglect (USN), were compared to children with a history of institutional rearing (IA) and children without a history of neglect using the Differential Abilities Scale, Test of Early Language Development, Child Behavior Checklist, and Parenting Stress Index. Factors predicting child functioning were also explored. RESULTS: Compared with youth that were not neglected, children with a history of USN and IA demonstrated lower cognitive and language scores and more behavioral problems. Both internalizing and externalizing behavior problems were most common in the USN group. Externalizing behavior problems predicted parenting stress. Higher IQ could be predicted by language scores and an absence of externalizing behavior problems. When comparing the two neglect groups, shorter time spent in a stable environment, lower scores on language skills, and the presence of externalizing behavior predicted lower IQ. CONCLUSION: These findings emphasize the importance of early stable, permanent placement of children who have been in neglectful and pre-adoptive international settings. While an enriching environment may promote resilience, children who have experienced early neglect are vulnerable to cognitive, language and behavioral deficits and neurodevelopmental and behavioral evaluations are required to identify those in need of intervention.

Enhancing the algorithm for developmental-behavioral surveillance and screening in children 0 to 5 years.

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.

Bullying and ostracism experiences in children with special health care needs.

OBJECTIVE: Bullying experiences are becoming increasingly common in children and can have devastating consequences. Ostracism threatens a child's need for self-esteem, sense of belonging, sense of control, and meaningful existence. Recent literature suggests that children with special health care needs may be at risk for these negative events and consequences. This study compares bullying and ostracism experiences in children with and without various special health care needs. METHODS: Participants aged 8 to 17 years completed questionnaires during a routine primary care or subspecialty clinic visit. Children with learning disabilities (N = 34), attention deficit or hyperactivity disorder (N = 100), autism spectrum disorders (N = 32), behavioral or mental health disorders (N = 33), and cystic fibrosis (CF, N = 22) were compared with 73 control children with no diagnosis on Reynolds' Bully-Victimization Scale scores and a 15-item pilot ostracism scale. RESULTS: Compared with the control group, children in the learning disabilities, autism spectrum disorders, and attention deficit or hyperactivity disorder groups exhibited significant victimization scores on the Bully-Victimization Scale, whereas the behavioral or mental health disorders group had increased mean victimization scores. The learning disabilities group also reported clinically significant bullying. The CF group did not report involvement as bullies or victims. All children with special health care needs groups had increased mean frequency of threats to basic needs related to ostracism, and children with attention deficit or hyperactivity disorder and autism spectrum disorders were at higher risk for ostracism experiences. CONCLUSION: Children with special health care needs may be at higher risk for bullying, victimization, and ostracism. Further research is needed to explore this relationship, especially as it relates to child adjustment. Children with special health care needs should be asked about bullying and ostracism experiences and potential effects as part of mental health screening.

Implementing developmental screening and referrals: lessons learned from a national project.

OBJECTIVES: To assess the degree to which a national sample of pediatric practices could implement American Academy of Pediatrics (AAP) recommendations for developmental screening and referrals, and to identify factors that contributed to the successes and shortcomings of these efforts. BACKGROUND: In 2006, the AAP released a policy statement on developmental surveillance and screening that included an algorithm to aid practices in implementation. Simultaneously, the AAP launched a 9-month pilot project in which 17 diverse practices sought to implement the policy statement's recommendations. METHODS: Quantitative data from chart reviews were used to calculate rates of screening and referral. Qualitative data on practices' implementation efforts were collected through semistructured telephone interviews and inductively analyzed to generate key themes. RESULTS: Nearly all practices selected parent-completed screening instruments. Instrument selection was frequently driven by concerns regarding clinic flow. At the project's conclusion, practices reported screening more than 85% of patients presenting at recommended screening ages. They achieved this by dividing responsibilities among staff and actively monitoring implementation. Despite these efforts, many practices struggled during busy periods and times of staff turnover. Most practices were unable or unwilling to adhere to 3 specific AAP recommendations: to implement a 30-month visit; to administer a screen after surveillance suggested concern; and to submit simultaneous referrals both to medical subspecialists and local early-intervention programs. Overall, practices reported referring only 61% of children with failed screens. Many practices also struggled to track their referrals. Those that did found that many families did not follow through with recommended referrals. CONCLUSIONS: A diverse sample of practices successfully implemented developmental screening as recommended by the AAP. Practices were less successful in placing referrals and tracking those referrals. More attention needs to be paid to the referral process, and many practices may require separate implementation systems for screening and referrals.

Paternal correlates of cognitive and behavioral functioning in children with myelomeningocele.

This study examined paternal correlates of the cognitive and behavioral functioning of children with myelomeningocele, when controlling for maternal and biological/child correlates as possible sources of variance. Participants were 48 parent dyads of children with myelomeningocele (21 males, 27 females) between the ages of 4 and 12 years (mean 8y, 2mo, SD 2y 3mo). Lesion levels of participants ranged from the thoracic to sacral (thoracic-L3: n=15; L4-L5: n=15; sacral or lipomeningocele: n=18), of whom 38 had been shunted for hydrocephalus. Half of the participants (n=24) were community ambulators. Potential predictors of cognitive and behavioral functioning included paternal and maternal parenting stress, as assessed by the Parenting Stress Index - Short Form paternal, and maternal perceptions of support and resources, as assessed by the Family Resource Scale and the Family Support Scale, and child medical severity. Paternal variables significantly correlated with behavioral functioning but not with cognitive functioning. Regression analyses revealed that paternal personal distress and maternal perceived adequacy of social support accounted for significant variance in overall child behavioral functioning. Only child medical severity and annual household income explained significant variance in overall child cognitive functioning. These findings add to the growing body of theory and research documenting that fathers make unique and significant contributions to child adjustment in children with myelomeningocele. Both fathers and mothers need to be considered in interventions supporting development and adjustment of children with myelomeningocele and their families.