Early Developmental Trends in High-Risk Neonates Later Diagnosed With Autism Spectrum Disorder.

PURPOSE: We hypothesized that clinical data from a neonatal intensive care unit (NICU) infant developmental follow-up clinic would identify early manifestations of autism spectrum disorder (ASD). METHODS: One hundred forty-four infants were identified; 72 later diagnosed with ASD and 72 controls. Retrospective chart review provided data from the Test of Infant Motor Performance (TIMP) and the Bayley Scales of Infant and Toddler Development, third edition (Bayley-III), between 8 and 26 months of age. RESULTS: Between-group comparisons indicated no significant group difference in TIMP scores; however, Bayley-III scaled scores differed between the groups at 2 administration times. The within-group Bayley-III change scores declined significantly more for the ASD group in cognitive and communication subtests. CONCLUSION: High-risk neonates, due to prematurity or morbidity, later diagnosed with ASD demonstrated statistically significant differences, including a more precipitous drop in Bayley-III scores over time. Early, longitudinal developmental surveillance for neonates at risk of ASD is critical. What this adds to the evidence: Early identification of ASD is critical to optimize developmental outcomes in young children, including infants born prematurely or with neonatal morbidity, who are perceived to have an increased risk for ASD. Despite these findings, minimal research has been conducted to evaluate the utility of commonly administered norm-referenced developmental surveillance instruments to identify possible early signs of ASD in this high-risk population due to prematurity or neonatal morbidity and not familial association. The present study analyzed retrospectively collected clinical data from a NICU developmental follow-up clinic for 144 infants, 72 of which were later diagnosed with ASD and 72 sex- and gestational age-matched controls. Results demonstrated statistically significant poorer Bayley-III outcomes for the ASD group compared with controls at 2 different study time points, including a more precipitous drop in Bayley-III scaled scores over time. This study highlights the importance of early and longitudinal developmental surveillance for high-risk neonates at risk of ASD.

OpenNotes: Anticipatory Guidance and Ethical Considerations for Pediatric Psychologists in Interprofessional Settings.

OBJECTIVES: The 21st Century Cures Act included an "OpenNotes" mandate to foster transparent communication among patients, families, and clinicians by offering rapid electronic access to clinical notes. This article seeks to address concerns about increased documentation burden, vulnerability to patient complaints, and other unforeseen consequences of patients having near-real-time access to their records. METHODS: This topical review explores both extant literature, and case examples from the authors' direct experience, about potential responses/reactions to OpenNotes. RESULTS: The ethics of disclosing medical information calls for nuanced approaches: Although too little access can undermine a patient's autonomy and the capacity for truly egalitarian shared decision-making, unfettered access to all medical information has significant potential to harm them. Suggested strategies for mitigating risks in premature disclosure include patient and provider education and "modularizing" sensitive information in notes. CONCLUSION: The OpenNotes era has ushered in the possibilities of greater patient and family collaboration in shared decision-making and reduced barriers to documentation sharing. However, it has raised new ethical and clinician documentation considerations. In addition to clinician education, patients and families could benefit from education around the purpose of clinical documentation, how to utilize OpenNotes, and the benefits of engaging in dialogue regarding the content and tone of documentation.

Increasing Patient Portal Activation in a Pediatric Subspecialty Clinic.

BACKGROUND: Online patient portals are not widely used, despite their advantages for efficient communication, especially for patients with chronic conditions. A hospital-based group practice of Developmental-Behavioral Pediatricians initiated this quality improvement (QI) project with a goal to increase the percentage of patients with an active MyChart (Epic Systems Corporation's patient portal) account and ultimately improve efficiency of communication between families and clinical staff. METHODS: Using QI methodology, we identified staff commitment, workflow issues, and family awareness as gaps and implemented progressive Plan, Do, Study, Act cycles aimed at developing standard processes for activating families on MyChart. We tracked our project measures with statistical process control methodology and sustained our progress with improving awareness and regular feedback. RESULTS: Patient portal activations increased from 1.8% to 30% in a 6-month time period. Highly successful interventions included development and implementation of a standard process for activation, staff education to ensure comfort and commitment, having families opt out instead of opt in, and completed activation of accounts before families leaving clinic. CONCLUSIONS: Patient portal activation can be significantly increased through systematic application of QI methodology to address staff training and workflow in a busy subspecialty clinic. Engagement of operations staff and completion of the activation process while the family is still in clinic seemed to be effective in getting families activated in MyChart. It is possible to improve patient portal activation with minimal impact to workflow.

Screening for autism identifies behavioral disorders in children functional defecation disorders.

UNLABELLED: This study prospectively assessed whether positive screening surveys for autism spectrum disorders (ASDs) in children with functional defecation disorders (FDDs) accurately identify ASD. Parents of children (4-12 years) who met Rome III criteria for functional constipation (FC), FC with fecal incontinence (FI) and functional nonretentive FI (FNRFI) completed two ASD screening surveys. Children with positive screens were referred for psychological evaluation, and a year later, follow-up surveys were conducted. Of the 97 study participants, 30.9 % were diagnosed with FC, 62.9 % with FC with FI, and 6.2 % with FNRFI. ASD surveys were positive for 27 children (27.8 %). New DSM diagnoses were made in 10 out of the 15 children that completed further evaluation. Two (2.1 %) met criteria for ASD, and 12 (12.4 %) met criteria for other behavioral disorders. Average SRS and SCQ-L scores were higher in subjects with FC with FI as compared to FC alone and in those who reported no improvement versus those who reported improvement 1 year later. CONCLUSION: While positive ASD screening surveys did not correctly identify ASD in the majority, it did help to identify other unrecognized behavioral disorders in children with FDD. High screening scores were more common in children with FC with FI and in children with poorer responses to current medical treatments. WHAT IS KNOWN: •A prior study found that 29 % of children with FDD scored positive on ASD screening questionnaires. •Whether positive screens correctly identify ASD in children with FDD is unknown. What is New: •This study shows that positive ASD screens do not correctly identify ASD in children with FDD. However, the use of ASD screening questionnaires can identify previously unrecognized and untreated behavioral/developmental disorders in children with FDD. •High screening scores are more common in children with FC with FI and in children with poorer responses to current medical treatments.

Preparing Tomorrow's Doctors to Care for Patients With Autism Spectrum Disorder.

People with autism spectrum disorder (ASD) and other developmental disabilities have poorer health and face unique barriers to health care compared to people without disabilities. These health disparities can be partially attributed to physicians' limited knowledge about caring for patients with developmental disabilities. The purpose of this study was to determine the effectiveness of ASD training for medical students. Our training included a lecture and a panel presentation that featured people with ASD and family members. Students reported improved knowledge, skills, confidence, and comfort in caring for patients with ASD.

Improving Access to Care at Autism Treatment Centers: A System Analysis Approach.

OBJECTIVE: The prevalence of autism spectrum disorder is steadily increasing and placing more demands on already overburdened diagnostic and treatment systems. A thoughtful, systematic reorganization of autism service delivery may reduce delays and better meet the growing need. METHODS: Two clinical centers in the Autism Intervention Research Network on Physical Health, Cincinnati Children's Hospital Medical Center (CCHMC) and Nationwide Children's Hospital (NCH), undertook a year-long access improvement project to reduce delays to care by using system analysis to identify sources of delay and to target changes by using a set of defined access principles. Although both sites addressed access, they focused on slightly different targets (reducing number of patients with autism spectrum disorders waiting for follow-up appointments at NCH and reducing delay to new diagnosis at CCHMC). RESULTS: Both sites achieved dramatic improvements in their complex, multidisciplinary systems. A 94% reduction in number of patients on the waitlist from 99 to 6 patients and a 22% reduction in median delay for a new ongoing care appointment were realized at NCH. A 94% reduction in third next available appointment for new physician visits for children 3 to 5 years old was realized at CCHMC. CONCLUSIONS: This article demonstrates that 2 different clinical systems improved access to care for autism diagnosis and follow-up care by identifying sources of delay and using targeted changes based on a set of access change principles. With appropriate guidance and data analysis, improvements in access can be made.

Behavioral and Physiological Factors Associated With Selective Eating in Children With Autism Spectrum Disorder.

Selective eating is common in children with autism spectrum disorder (ASD), but it is not yet well understood. The objectives of this study were to examine a new definition of selective eating, compare behavioral measures between children with ASD and selective eating and those without selective eating, and determine relationships among behavioral measures and measures of selective eating. Participants were assigned to groups on the basis of number of foods eaten compared with a population-based sample. Results of one-way multivariate analysis of variance indicated no overall effect of group for challenging behaviors, sensory reactivity, or repetitive behaviors. Between-participant tests indicated that scores for compulsive behaviors were significantly lower (p = .036) for the selective eating group. Correlations were moderately strong among variables relating to food intake and behavioral variables, but were not significant between selective eating and behavioral variables. Further research is needed to validate the definition of selective eating and to identify targets for intervention.

Comparison of systematic developmental surveillance with standardized developmental screening in primary care.

Many physicians use surveillance questions to assess development; the American Academy of Pediatrics recommends screening at 9-, 18-, and 24-month health supervision visits (HSVs). There are no studies directly comparing surveillance with screening. The authors directly compared systematic surveillance with standardized screening using a cross-sectional observational study of children with no known delays. Surveillance questions were completed at each HSV. The Ages and Stages Questionnaire (ASQ) was administered following the 9-, 18-, or 24-month HSV. The authors compared detection of delays by surveillance with ASQ screening. Using surveillance, 11/95 subjects were identified as delayed. Using the ASQ, 15/95 subjects scored fail; 28/95 scored monitor. Among the 11 delayed surveillance subjects, 5 scored fail on the ASQ and 5 scored monitor. Ten of the 15 subjects scoring fail on the ASQ were not identified by surveillance. The study's findings support the American Academy of Pediatrics recommendations for periodic formal screening in addition to continued surveillance.

Genetic testing in autism: how much is enough?

PURPOSE: To evaluate the yield of genetic testing in children with autism spectrum disorders. METHODS: We performed a retrospective chart review of 71 unrelated patients with a diagnosis of an isolated autism spectrum disorder seen in a genetics clinic over a period of 14 months. For most, referrals occurred after evaluation by a developmental pediatrician and/or psychologist to establish the diagnosis. Tiered laboratory testing for the majority of the patients followed a guideline that was developed in collaboration with clinicians at The Autism Center at Children's Hospital, Columbus, OH. RESULTS: The patients included 57 males and 14 females; 57 met DSM-IV criteria for autism, with the rest being Asperger or pervasive developmental disorder not otherwise specified. Macrocephaly [head circumference (HC) >or=95%] was present in 19 (27%). Two children had visible chromosome abnormalities (47,XYY; 48,XY + 2mar/49,XY + 3mar). Two patients with autism and macrocephaly had heterozygous mutations in the PTEN tumor suppressor gene. Three females had Rett syndrome, each confirmed by DNA sequencing of the MECP2 gene. Extensive metabolic testing produced no positive results, nor did fragile X DNA testing. CONCLUSION: The overall diagnostic yield was 10% (7/71). PTEN gene sequencing should be considered in any child with macrocephaly and autism or developmental delay. Metabolic screening may not be warranted in autism spectrum disorders without more specific indications or additional findings.

Randomized controlled trial of transdermal secretin on behavior of children with autism.

Previous trials of secretin for the treatment of autism have utilized a single or double dose administered intravenously. This is a report of a double-blind, randomized, controlled crossover trial of transdermally applied secretin in 15 children diagnosed with autism or pervasive developmental delay. Secretin or placebo was applied daily, in ointment form, to the backs of the children in randomized, successive 4 week periods with an intermediate 6 week washout period. Behavioral outcomes were measured by parents and teachers using the Autism Treatment Evaluation Checklist. Overall, there were no statistically significant differences in speech, sociability, sensory, and health scores for treatment versus placebo periods. In addition, there were no differences in such scores for children with a history of diarrhea. Severity of autism was significantly greater at baseline in children receiving concomitant medications. Improvement in speech was found during the treatment phase of the trial (p=0.0479 for secretin versus placebo) only in children not using other medications.

Double-blind placebo-controlled trial of secretin: effects on aberrant behavior in children with autism.

Secretin has been proposed as a treatment alternative for autistic spectrum disorders, but empirical support is lacking. A double-blind placebo-controlled study examined the effect of a single dose of synthetic human secretin on aberrant behavior. Parent and teacher data from the Aberrant Behavior Checklist for eight male children were analyzed for reliable change in a clinical replication series. By parent and teacher report, the majority of change occurred either on the placebo trial or reflected deterioration subsequent to secretin infusion. Repeated-measures multivariate analysis of variance results were similar. Results are consistent with other studies, suggesting that secretin may not be an effective treatment option.