An eHealth Program for Insomnia in Children With Neurodevelopmental Disorders (Better Nights, Better Days): Protocol for an Economic Evaluation of a Randomized Controlled Trial.

BACKGROUND: Children with neurodevelopmental disorders have a high risk of sleep disturbances, with insomnia being the most common sleep disorder (ie, chronic and frequent difficulties with going and staying asleep). Insomnia adversely affects the well-being of these children and their caregivers. Pediatric sleep experts recommend behavioral interventions as the first-line treatment option for children. Better Nights, Better Days for Children with Neurodevelopmental Disorders (BNBD-NDD) is a 5-session eHealth behavioral intervention delivered to parents to improve outcomes (eg, Pediatric Quality of Life Inventory [PedsQL]) for their children (ages 4-12 years) with insomnia and who have a diagnosis of mild to moderate attention-deficit/hyperactivity disorder, autism spectrum disorder, cerebral palsy, or fetal alcohol spectrum disorder. If cost-effective, BNBD-NDD can be a scalable intervention that provides value to an underserved population. OBJECTIVE: This protocol outlines an economic evaluation conducted alongside the BNBD-NDD randomized controlled trial (RCT) that aims to assess its costs, efficacy, and cost-effectiveness compared to usual care. METHODS: The BNBD-NDD RCT evaluates the impacts of the intervention on children's sleep and quality of life, as well as parents' daytime functioning and psychosocial health. Parent participants were randomized to the BNBD-NDD treatment or to usual care. The economic evaluation assesses outcomes at baseline and 8 months later, which include the PedsQL as the primary measure. Quality of life outcomes facilitate the comparison of competing interventions across different populations and medical conditions. Cost items include the BNBD-NDD intervention and parent-reported usage of private and publicly funded resources for their children's insomnia. The economic evaluation involves a reference case cost-effectiveness analysis to examine the incremental cost of BNBD-NDD per units gained in the PedsQL from the family payer perspective and a cost-consequence analysis from a societal perspective. These analyses will be conducted over an 8-month time horizon. RESULTS: Research funding was obtained from the Kids Brain Health Network in 2015. Ethics were approved by the IWK Health Research Ethics Board and the University of Calgary Conjoint Health Research Ethics Board in January 2019 and June 2022, respectively. The BNBD-NDD RCT data collection commenced in June 2019 and ended in April 2022. The RCT data are currently being analyzed, and data relevant to the economic analysis will be analyzed concurrently. CONCLUSIONS: To our knowledge, this will be the first economic evaluation of an eHealth intervention for insomnia in children with neurodevelopmental disorders. This evaluation's findings can inform users and stakeholders regarding the costs and benefits of BNBD-NDD. TRIAL REGISTRATION: ClinicalTrial.gov NCT02694003; https://clinicaltrials.gov/study/NCT02694003. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/46735.

Assessment of Autism Symptoms From 6 to 18 Months of Age Using the Autism Observation Scale for Infants in a Prospective High-Risk Cohort.

The objectives were to characterize behavioral signs of autism spectrum disorder (ASD) in younger siblings of diagnosed children (high-risk; HR) and examine classification features of the Autism Observation Scale for Infants (AOSI). Participants (501 HR and 180 low-risk [LR]) were assessed between 6 and 18 months using the AOSI and at age 3 for ASD diagnoses. Total AOSI scores differentiated HR infants later diagnosed with ASD starting at 12 months. ROC analyses identified 12- and 18-month cutoff scores associated with 0.52 sensitivity and 0.74 specificity and 0.73 sensitivity and 0.65 specificity, respectively. Although classification accuracy does not support use as a standalone screen, the AOSI identifies features associated with ASD starting at 6 months and differentiates HR infants with ASD by 12 months.

An eHealth insomnia intervention for children with neurodevelopmental disorders: Results of a usability study.

BACKGROUND: Sleep problems, particularly insomnia, are highly prevalent in children with neurodevelopmental disorders (NDD) and can negatively affect health and development. eHealth interventions may increase access to evidence-based care for insomnia for children with NDD, as programs are rare in most communities. Better Nights, Better Days (BNBD) is an online, parent-implemented intervention for pediatric insomnia in typically developing 1- to 10-year-olds. AIMS: The present study examined whether parents of children with NDD perceived the original BNBD to be usable, acceptable, and feasible, and what modifications might be necessary to adapt it for children with NDD. METHODS AND PROCEDURES: Twenty Canadian parents/caregivers of children aged 4-10 years with NDD and insomnia implemented the BNBD intervention with their children, and completed usability questionnaires. Questionnaire data were analyzed quantitatively (descriptive statistics) and qualitatively (thematic analysis). OUTCOMES AND RESULTS: Participants reported the intervention to be usable, useful, acceptable, and feasible. Several modifications were suggested to make the intervention more appropriate and acceptable for use with children with NDD. CONCLUSIONS AND IMPLICATIONS: Results support a largely transdiagnostic approach to treating sleep in children with NDD, and will inform the development of BNBD for Children with Neurodevelopmental Disorders (BNBD-NDD).

Brief Report: Preliminary Feasibility of the TEDI: A Novel Parent-Administered Telehealth Assessment for Autism Spectrum Disorder Symptoms in the First Year of Life.

Families with early concerns about infant symptoms of ASD have limited access to experienced professionals for screening and guidance. Telehealth has been used to reduce access disparities in other pediatric populations and has shown promise in parent-implemented interventions for ASD. We investigated the feasibility of a novel level-2 telehealth assessment of infants' early social communication and ASD symptoms, the Telehealth Evaluation of Development for Infants (TEDI). Parents of eleven infants aged 6-12 months were coached to administer specific semi-structured behavioral probes. Initial feasibility, reliability, and acceptability benchmarks were met. These findings suggest the feasibility of screening infants via telehealth, and are supportive of further large-scale efforts to validate this method for longitudinal monitoring of symptomatic infants in community settings.

Types of Services and Costs of Programs for Preschoolers with Autism Spectrum Disorder Across Sectors: A Comparison of Two Canadian Provinces.

This study measured resource utilization and costs for pre-school autism spectrum disorder (ASD)-related services in community-based sectors from multiple payer perspectives in two Canadian provinces, Nova Scotia (NS) and New Brunswick (NB), during the 12 months prior to and following the start of early intensive behavioural intervention (EIBI). The results indicate significant differences between NB and NS in utilization of services and costs to families, public sector and society. Differences can be attributed to variation in EIBI delivery models and may also be influenced by differences in diagnostic assessment practices. The study results provide resource utilization rates and costs which could be used in future economic evaluations and to inform policy making to improve outcomes for children with ASD.

Stability of diagnostic assessment for autism spectrum disorder between 18 and 36 months in a high-risk cohort.

Children with autism spectrum disorder (ASD) are diagnosed, on average, around the age of 4 years. However, previous research has shown that the diagnosis can be made as early as 2 years, and that if the child is seen a year or more later, it is highly likely that the diagnosis will be confirmed. In this study, to examine whether diagnoses made as early as 18 months of age are also "stable," we followed a group of younger siblings of children with ASD (who are known to be at higher risk). We also examined whether the age of ASD diagnosis within this high-risk group was related to the severity of children's ASD symptoms or developmental delays. Participants (n = 381) were seen at three ages: 18 months, 24 months, and 3 years. ASD symptoms, general development, and adaptive functioning were assessed at each time point. Twenty-three children were diagnosed with ASD at 18 months and a total of 61 at 24 months. Of these diagnoses, 19/23 (82.6%) and 56/61 (91.8%), respectively, were confirmed independently at 3 years. However, 45 children were diagnosed with ASD at 3 years who had not been identified at earlier visits. Children diagnosed at 18 months, in comparison to those diagnosed at 24 months, had less advanced language and adaptive skills at 18 months. Children not diagnosed with ASD until 3 years, compared with those diagnosed earlier, had more advanced language and adaptive skills, and milder ASD symptoms. Autism Res 2016, 9: 790-800. © 2015 International Society for Autism Research, Wiley Periodicals, Inc.

Behavioral Pediatrics Feeding Assessment Scale in Young Children With Autism Spectrum Disorder: Psychometrics and Associations With Child and Parent Variables.

OBJECTIVE: The factor structure and validity of the Behavioral Pediatrics Feeding Assessment Scale (BPFAS; Crist & Napier-Phillips, 2001) were examined in preschoolers with autism spectrum disorder (ASD). METHODS: Confirmatory factor analysis was used to examine the original BPFAS five-factor model, the fit of each latent variable, and a rival one-factor model. None of the models was adequate, thus a categorical exploratory factor analysis (CEFA) was conducted. Correlations were used to examine relations between the BPFAS and concurrent variables of interest. RESULTS: The CEFA identified an acceptable three-factor model. Correlational analyses indicated that feeding problems were positively related to parent-reported autism symptoms, behavior problems, sleep problems, and parenting stress, but largely unrelated to performance-based indices of autism symptom severity, language, and cognitive abilities, as well as child age. CONCLUSION: These results provide evidence supporting the use of the identified BPFAS three-factor model for samples of young children with ASD.