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Objectives: Patterns of psychotropic medication use in children and adolescents with Down syndrome (DS) are largely unknown. Clinical decisions are often made from evidence and experience from individuals with autism spectrum disorder (ASD) or intellectual disability (ID). Methods: Longitudinal data from 670 children with DS who received care in a specialty DS clinic from March 2021 to February 2024 were collected. After each clinic visit, the clinician indicated the presence or absence of co-occurring neurodevelopmental (ND) or mental health (MH) diagnoses, as well as whether the individual was prescribed a psychopharmacological treatment. We used descriptive statistics and analyzed associations between psychotropic medication use, co-occurring ND/MH conditions, and demographic data. Results: 19.1% of patients were prescribed at least one psychotropic medication at their most recent clinical visit. Alpha-agonists were the most commonly prescribed medication class (30.8%), followed by stimulants (18.9%), and antidepressants (16.7%). There was a significant difference in psychotropic medication use by age, with older children having increased odds of being prescribed a psychotropic medication. There were no differences in psychotropic medication use across sex ( p = 0.10), race ( p = 0.10), or household income ( p = 0.16). Conclusions: We found that one-fifth of patients with DS were prescribed psychotropic medications. Nearly every individual with DS who was prescribed a psychotropic medication had a co-occurring ND/MH condition, yet these rates were lower than what have been reported in children with ID, ASD, and attention deficit/hyperactivity disorder. Further research needs to include those with DS to further understand medication efficacy and safe dosing practices to ensure optimal outcomes.

Objective: Families of children with neurodevelopmental disorders have developmental, behavioral, and social-emotional needs that affect quality of life (QoL). This study assesses the validity and utility of a caregiver QoL measure; characterizes QoL in families with children with Down syndrome (DS), autism spectrum disorder (ASD), and a dual diagnosis of DS and ASD (DS + ASD); and compares and explores differences in QoL based on diagnosis., Methods: Caregivers of children and adolescents with ASD (n = 610) and DS (n = 177) completed the Pediatric Quality of Life Inventory Family Impact Module 2.0, yielding overall, parent functioning, family functioning, and subscale scores, and a Parent Global Impression (PGI) rating. An ASD cohort (n = 177) was sex matched to the DS cohort (n = 177) to mitigate potential sex bias. Additional analyses compared these groups with children and adolescents with DS + ASD (n = 37)., Results: Analyses showed that the Pediatric Quality of Life Inventory was valid and reliable in DS, ASD, and DS + ASD populations. No differences were reported in PGI ratings among groups. Caregivers in the DS group demonstrated higher QoL and family functioning compared with the ASD and DS + ASD groups. The DS group reported significantly better Emotional Functioning and Communication and less Worry than the ASD group. Compared with the ASD group, caregivers of the DS + ASD group indicated more concerns with Physical Functioning. Notably, the DS + ASD group had significantly lower levels of QoL than the DS group in nearly all caregiver functioning domains., Conclusion: This study highlights differences in QoL within and between neurodevelopmental disorder groups, which may help identify families requiring additional support, advocacy, and community engagement., Competing Interests: Disclosure: The authors declare no conflict of interest., (Copyright © 2023 Wolters Kluwer Health, Inc. All rights reserved.)

Replacement of fee-for-service with capitation arrangements, forces physicians and institutions to minimize health care costs, while maintaining high-quality care. In this report we described how patients and their families (or caregivers) can work with members of the medical care team to achieve these twin goals of maintaining-and perhaps improving-high-quality care and minimizing costs. We described how increased self-management enables patients and their families/caregivers to provide electronic patient-reported outcomes (i.e., symptoms, events) (ePROs), as frequently as the patient or the medical care team consider appropriate. These capabilities also allow ongoing assessments of physiological measurements/phenomena (mHealth). Remote surveillance of these communications allows longer intervals between (fewer) patient visits to the medical-care team, when this is appropriate, or earlier interventions, when it is appropriate. Systems are now available that alert medical care providers to situations when interventions might be needed.

The aim of this study was to evaluate an automated trigger algorithm designed to detect potentially adverse events in children with Attention-Deficit/Hyperactivity Disorder (ADHD), who were monitored remotely between visits. We embedded a trigger algorithm derived from parent-reported ADHD rating scales within an electronic patient monitoring system. We categorized clinicians' alert resolution outcomes and compared Vanderbilt ADHD rating scale scores between patients who did or did not have triggered alerts. A total of 146 out of 1738 parent reports (8%) triggered alerts for 98 patients. One hundred and eleven alerts (76%) required immediate clinician review. Nurses successfully contacted parents for 68 (61%) of actionable alerts; 46% (31/68) led to a change in care plan prior to the next scheduled appointment. Compared to patients without alerts, patients with alerts demonstrated worsened ADHD severity (β = 5.8, 95% CI: 3.5⁻8.1 [ p < 0.001] within 90 days prior to an alert. The trigger algorithm facilitated timely changes in the care plan in between face-to-face visits.

Purpose: The purpose of this study was to review electronic tools that might improve the delivery of epilepsy care, reduce medical care costs, and empower families to improve self-management capability., Method: We reviewed the epilepsy-specific literature about self-management, electronic patient-reported or provider-reported outcomes, on-going remote surveillance, and alerting/warning systems., Conclusions: The improved care delivery system that we envision includes self-management, electronic patient (or provider)-reported outcomes, on-going remote surveillance, and alerting/warning systems. This system and variants have the potential to reduce seizure burden through improved management, keep children out of the emergency department and hospital, and even reduce the number of outpatient visits., (Copyright © 2018. Published by Elsevier Inc.)

Controversy exists regarding the DSM-5 criteria for ASD. This study tested the psychometric properties of the DSM-5 model and determined how well it performed across different gender, IQ, and DSM-IV-TR sub-type, using clinically collected data on 227 subjects (median age = 3.95 years, majority had IQ > 70). DSM-5 was psychometrically superior to the DSM-IV-TR model (Comparative Fit Index of 0.970 vs 0.879, respectively). Measurement invariance revealed good model fit across gender and IQ. Younger children tended to meet fewer diagnostic criteria. Those with autistic disorder were more likely to meet social communication and repetitive behaviors criteria (p < .001) than those with PDD-NOS. DSM-5 is a robust model but will identify a different, albeit overlapping population of individuals compared to DSM-IV-TR.