Medical Evaluation of Children with Intellectual Disability: Clinician Compliance with Published Guidelines

Background: Children with intellectual disability (CWID) in the USA are typically referred to child neurologists (CN) and developmental-behavioral pediatricians (DBP) for medical evaluation. Although the American Academy of Neurology/Child Neurology Society (AAN/CNS) and the American Academy of Pediatrics (AAP) have published evaluation guidelines, experience suggests CN and DBP do not consistently follow them. Our goal was to assess CN’s and DBP’s approach to evaluating CWID and overall compliance with published guidelines. Methods: Questionnaires were mailed to CN and DBP in the U.S. (n=1897). Physicians were asked demographic information and which laboratory tests they would "routinely order" for the hypothetical case of a 3½ year old boy with Full Scale IQ=58 and unremarkable neurological history and exam. Chi-square tests were performed to compare sub-specialists’ ordering practices. Results: 127 CN and 140 DBP responded. 7.1% CN (n=9) and 11.4% DBP (n=16) complied with AAN/CNS and AAP guidelines, respectively. Although routinely indicated, 36.2% CN and 31.4% DBP would not routinely order chromosomal microarray (CMA), and 42.5% CN and 26.4% DBP would not routinely order DNA for Fragile X (χ2=7.67, p=0.006). 7.9% CN and 7.1% DBP would order a karyotype without CMA. Although not indicated, 7.1% CN and 0.7% DBP noted they would routinely order an EEG (χ2=7.50, p=0.006). A brain MRI is only recommended by AAN/CNS guidelines; 49.6% CN and 12.9% DBP reported they would routinely order it (χ2=42.55, p<.0001). Conclusion: Few CN and DBP follow published guidelines for laboratory evaluation of CWID. Relative to DBP, CN more frequently order EEGs and MRIs but less frequently order recommended genetic tests

Parenting challenges of grandparents raising grandchildren: Discipline, child education, technology use, and outdated health beliefs

BACKGROUND: As of 2015, approximately three million children in the United States were being raised primarily by their grandparents. This study aims to examine, in a large national sample, to what extent grandparents raising grandchildren (GRGs) have difficulty with discipline and meeting their grandchild’s educational and social needs, find computers/other technology challenging, and subscribe to outdated health beliefs. METHODS: An anonymous online parenting questionnaire was administered to GRGs recruited through state and local grandparent support groups and elderly service agencies. RESULTS: 733 grandparents that self-identified as the primary caregiver of one or more grandchildren met inclusion criteria. 56.5% of GRGs reported difficulties with discipline, and 19.1% believed corporal punishment to be an appropriate method of discipline. Approximately a third of GRGs reported difficulties with their grandchild’s education, social and recreational activities. Nearly a third of GRGs did not find using their grandchild’s school website or portal to be easy; those who had difficulty were more likely to experience difficulties registering their grandchild for school (τ = -.127, p = .007) and were less likely to feel that teachers maintained adequate contact (τ = .242, p \u3c .001). A large percentage of GRGs subscribed to outdated health beliefs, such as scrapes healing better if they are not covered with a bandage (64.0%) and ice baths beingan appropriate treatment for a fever (39.8%). CONCLUSION: GRGs encounter significant parenting challenges, owing to generational differences. Healthcare providers and other professionals should provide GRGs with anticipatory guidance to ensure grandchildren’s needs are properly met

Prevalence and Correlates of Elopement in a Nationally Representative Sample of Children with Developmental Disabilities in the United States

Despite increased awareness and concern about children with developmental disabilities wandering away from adult supervision, there is a paucity of research about elopement. This is the first study to examine and report the prevalence and correlates of elopement in a nationally representative sample of school-age children in the United States with an autism spectrum disorder (ASD) and/or cognitive impairment. Data were obtained from the CDC's "Pathways" Survey, a follow-up telephone survey of the parents of 4,032 children with a developmental condition. 3,518 children that had ASD, intellectual disability (ID), and/or developmental delay (DD) at the time of survey administration were included for analysis. Children were divided into three condition groups: ASD-only; ID/DD-only; ASD+ID/DD. Logistic regression analyses were used to compare the prevalence of elopement and rates of preventive measure use (barriers and/or electronic devices) across condition groups, and to examine the clinical and demographic correlates of elopement. T-tests were also performed to compare scores on the Children's Social Behavior Questionnaire (CSBQ) between wanderers and non-wanderers. Overall, 26.7%of children had reportedly eloped within the previous year, most commonly from public places. Children with ASD-only and ASD+ID/DD were more likely to have eloped than those with ID/DD-only. Across all groups, wanderers scored higher than non-wanderers on five out of six CSBQ subscales; they were more likely not to realize when there is danger, to have difficulty distinguishing between strangers and familiar people, to show sudden mood changes, to over-react to everything/everyone, to get angry quickly, to get lost easily, and to panic in new situations or if change occurs. Even after controlling for elopement history, parents of children in the ASD+ID/DD group were more likely than those in the other condition groups to report using physical or electronic measures to prevent wandering