Skipping the Line: Inequality in Access to Developmental-Behavioral Care.

CASE: The mother of an 18-month-old boy contacted the developmental and behavioral pediatrics clinic to request an evaluation because of concerns that her son is not using any words and only recently began walking. The child's mother became upset when she was notified that the clinic policy requires receipt of a formal request for evaluation from the primary care physician and that the first available appointment was in 9 months. Later that day, the child's grandmother contacted the clinic and reported that she is a member of the Donor Society affiliated with the university/medical system. Membership in the Donor Society is granted to individuals who have met specific philanthropic thresholds benefiting the university. One benefit to members of the Donor Society is the ability to access subspecialty medical services for themselves and their family members, across all disciplines, within 5 business days of their request.After confirming the details of the Donor Society promise with the philanthropic department of the hospital, a small committee of professionals within the clinic gathered to discuss the implications of this promised benefit to Donor Society members. This clinic is the only source for specialized, multidisciplinary developmental-behavioral health care that accepts public insurance within a 200-mile radius. The current waitlist for evaluation is 9 to 15 months depending on the reason for referral, and approximately 75% of patients on the waitlist receive some form of public assistance and/or live in a rural or underserved area. During the discussion, it was noted that there are 2 developmental-behavioral pediatric clinicians who practice within a cash-based private practice setting in the community. The waitlist for that practice was recently reported to be 3 to 6 months depending on the reason for evaluation, but that practice also requires a referral from the primary care physician before scheduling an initial evaluation.How would you recommend that the clinicians in the developmental and behavioral pediatrics clinic respond to the request to fulfill the promises made by the university to members of the Donor Society? How does a promise such as this one made to the Donor Society affect structural inequalities within the health care system and what strategies could be used to mitigate further inequalities that may result?

Screening for Anemia in Children with Down Syndrome.

OBJECTIVE: As part of the 2011 American Academy of Pediatrics (AAP) health supervision guidelines for children with Down syndrome (DS), annual screening for iron deficiency anemia is recommended between the ages of 1 and 18 years, but the evidence supporting this recommendation is limited. This study aimed to assess the prevalence of anemia in patients with DS between the ages of 1 and 18 years to provide additional evidence for the AAP 2011 guideline recommendations for annual hemoglobin and ferritin screening in patients with DS. METHODS: A retrospective cohort study was completed by obtaining data from the electronic health record (EHR) for patients meeting the following inclusion criterion: a diagnosis of DS in patients aged 1 to 18 years seen at our institution with hemoglobin drawn between July 2012 and 2016. Data were analyzed by the Fisher exact test and χ test. RESULTS: A total of 200 patients were identified. 22.5% had anemia, defined as a hemoglobin concentration less than 2 SDs for normed age. The National Health and Nutrition Examination Survey (2007-2010) reported prevalence of anemia for children aged 1 to 5 years is 3.2% when compared with 18.7% in our sample. Of the 45 children with anemia, 5% had a microcytic, 67.5% a normocytic, and 27.5% a macrocytic anemia. Only 10 received a diagnosis of anemia in the EHR. CONCLUSION: The prevalence of anemia in this cohort of children with DS is significantly higher than that in the general population, supporting the AAP guidelines for an annual screening until the age of 18 years.

Preventing elopement in children with autism spectrum disorder.

Reports of missing children with autism spectrum disorder (ASD) are common in the media, and elopement can lead to dire consequences. This study quantified the use of preventive measures that target elopement, plus identified child/family characteristics associated with elopement and the use of preventive measures. This cross-sectional study included 394 caregivers of children ages 2-17 years with ASD followed in an academic medical center's Developmental-Behavioral Pediatrics clinic. Details about elopement, preventive measure use, and sociodemographic characteristics were assessed via an investigator-designed, parent advocate-approved questionnaire, while pertinent clinical factors were extracted from patients' electronic health records. Two hundred and sixty-seven caregivers (68%) reported elopement by their child. Elopement risk was not associated with sociodemographic characteristics, nor with any specific comorbidity or neurobehavioral medication. Children with limited communication skills were more likely to have a history of elopement (OR 2.24, 95% CI 1.30-3.84; P = 0.004). The most common preventive measure used was lock(s) at top of doors (51%), while less than a quarter of families were using handicap permits, signs/visual markers, or tracking devices. Implementation of certain modifications was statistically associated with socioeconomic status and comorbidities of interest. In addition to supporting previous literature about the increased elopement risk in children with limited communication skills, this study is the first to reveal that caregiver use of numerous preventive measures varies widely. The associations noted with use of specific preventive measures can help guide recommendations for this dangerous comorbid symptom, and provide information needed for future studies to assess the efficacy of various preventive measures. Autism Res 2019, 12: 1139-1146. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Elopement, defined as leaving an area without permission and placing oneself in a potentially dangerous situation, is a behavior exhibited by many children with autism. There is little information about the use of various modifications that target elopement in the pediatric population. This study identifies child/family characteristics that were related to elopement and the use of modifications, and stresses the importance of counseling families of children with autism about elopement.