Research indicates a substantial amount of time between parents’ first concerns about their child’s development and a diagnosis of Autism Spectrum Disorder (ASD). Telehealth presents an opportunity to expedite the diagnostic process. This project compared a novel telehealth diagnostic approach that utilizes clinically-guided in-home video recordings to the gold standard in-person diagnostic assessment. Participants included 40 families seeking an ASD evaluation for their child and 11 families of typically developing children. Children were between the ages of 18 months and 6 years, 11 months; mean adaptive behavior composite = 75.47 (SD = 15.94). All parent participants spoke English fluently. Families completed the Naturalistic Observation Diagnostic Assessment (NODA) for ASD, which was compared to an in-person assessment (IPA). Agreement between the two methods, as well as sensitivity, specificity, and interrater reliability were calculated for the full sample and the subsample of families seeking an ASD evaluation. Diagnostic agreement between NODA and the IPA in the full sample was 88.2% (kappa = 0.75), and 85% (kappa = 0.58) in the subsample. Sensitivity was 84.9% in both, while specificity was 94.4% in the full sample and 85.7% in the subsample. Kappa coefficients for interrater reliability indicated 85 to 90% accuracy between raters. NODA utilizes telehealth technology for families to share information with professionals, and provides a method to inform clinical judgment for a diagnosis of ASD. Due to the high level of agreement with the IPA in this sample, NODA has potential to improve the efficiency of the diagnostic process for ASD.
BackgroundObserving behavior in the natural environment is valuable to obtain an accurate and comprehensive assessment of a child’s behavior, but in practice it is limited to in-clinic observation. Research shows significant time lag between when parents first become concerned and when the child is finally diagnosed with autism. This lag can delay early interventions that have been shown to improve developmental outcomes.ObjectiveTo develop and evaluate the design of an asynchronous system that allows parents to easily collect clinically valid in-home videos of their child’s behavior and supports diagnosticians in completing diagnostic assessment of autism.MethodsFirst, interviews were conducted with 11 clinicians and 6 families to solicit feedback from stakeholders about the system concept. Next, the system was iteratively designed, informed by experiences of families using it in a controlled home-like experimental setting and a participatory design process involving domain experts. Finally, in-field evaluation of the system design was conducted with 5 families of children (4 with previous autism diagnosis and 1 child typically developing) and 3 diagnosticians. For each family, 2 diagnosticians, blind to the child’s previous diagnostic status, independently completed an autism diagnosis via our system. We compared the outcome of the assessment between the 2 diagnosticians, and between each diagnostician and the child’s previous diagnostic status.ResultsThe system that resulted through the iterative design process includes (1) NODA smartCapture, a mobile phone-based application for parents to record prescribed video evidence at home; and (2) NODA Connect, a Web portal for diagnosticians to direct in-home video collection, access developmental history, and conduct an assessment by linking evidence of behaviors tagged in the videos to the Diagnostic and Statistical Manual of Mental Disorders criteria. Applying clinical judgment, the diagnostician concludes a diagnostic outcome. During field evaluation, without prior training, parents easily (average rating of 4 on a 5-point scale) used the system to record video evidence. Across all in-home video evidence recorded during field evaluation, 96% (26/27) were judged as clinically useful, for performing an autism diagnosis. For 4 children (3 with autism and 1 typically developing), both diagnosticians independently arrived at the correct diagnostic status (autism versus typical). Overall, in 91% of assessments (10/11) via NODA Connect, diagnosticians confidently (average rating 4.5 on a 5-point scale) concluded a diagnostic outcome that matched with the child’s previous diagnostic status.ConclusionsThe in-field evaluation demonstrated that the system’s design enabled parents to easily record clinically valid evidence of their child’s behavior, and diagnosticians to complete a diagnostic assessment. These results shed light on the potential for appropriately designed telehealth technology to support clinical assessments using in-home video captured by families. This asse...
Individuals with Autism Spectrum Disorder (ASD) often engage in stereotypical behaviors. In some individuals these behaviors occur with very high frequency and can be disruptive and at times selfinjurious. We propose a system that can tacitly collect contextual data related to the individual's physiological state and their external environment, and map it to occurrences of stereotypies. A user study was conducted with children with ASD, parents, and caregivers to explore and validate this concept. A prototype of the system, developed through participatory design, was used in the study as a probe to elicit the information needs of these stakeholders, and provide a better understanding of the nuances involved in supporting those needs. Here we present the findings of this study, and four design recommendations; promoting ecological integration, addressing privacy concerns, supporting inference, and enabling customization.
Objectives: Certain clinical providers specialize in providing complementary and integrative medicine (CIM) therapies for children with autism spectrum disorder (ASD). Because many of these providers and their patients/ families have reported substantial improvement, the authors developed an online platform to carefully examine these clinical practices. The initial goal was to examine the feasibility of prospective data collection in this setting. The larger goals were to characterize the tests and treatments used in these clinics; examine associations between specific treatments, biomarkers, and improved outcomes; and identify promising treatments for future study.Design: Prospective cohort study. Setting: Four CIM clinics specializing in treating children with ASD. Patients: Children with ASD age 2-8 years.Interventions: The study protocol provided no interventions, but all interventions provided by the CIM clinical providers were recorded.Outcome measures: Aberrant Behavior Checklist (ABC); Social Responsiveness Scale (SRS); and instruments that assessed sensory sensitivity, language, gastrointestinal (GI) symptoms, pediatric quality of life, and caregiver strain.Results: Fourteen children were enrolled (mean age, 4.4 years). Over 3 months, the total behavior score (ABC) decreased (improved) from 110.8 to 103.8 (change, -7.0; 95% confidence interval [CI], -27.9 to 13.9), and the total social responsiveness score (SRS) decreased (improved) from 133.8 to 127.2 (change, -6.6; 95% CI, -30.5 to 17.3), but these changes were not statistically significant. Similarly, caregiver strain and pediatric quality of life decreased (improved) but by a nonsignificant amount. More severe GI symptoms and more severe ASD symptoms were associated with lower quality of life ( p < 0.001).Conclusions: Barriers to successful data collection were identified. Despite these challenges, this study could confirm interesting associations between data elements, highlighting the future value of similar systems for improving evidence-based care in this population.
Background Understanding adolescents' relationship with technology is a pressing topic in this digital era. There seem to be both beneficial and detrimental implications that originate from use of technology by adolescents. Approximately 95% of adolescents have access to a smartphone, and several studies show a positive correlation between screen addiction and trends of anxiety and depression. At the same time, research shows that two-thirds of adolescents believe that technology is a necessity for connecting and making new friends. Objective The aim of this formative study was to understand adolescents' perception of their own and others’ relationship with personal technology. Methods A survey was conducted with 619 adolescents ranging in age from 13 to 19 years. Adolescents were asked how they perceived the relationship with their personal technology, how they perceived others' (parents, siblings, or friends) relationship with personal technology, and how they wish to relate to their personal technology in the future. Results "Essential,” “Distractive,” and “Addictive” were the most commonly selected descriptors to describe both adolescents' own relationship with technology (essential: 106/619, 17.1%; distractive: 105/619, 17%; addictive: 88/619, 14.2% ) and others’ relationship as well (essential: 96/619, 15.6%; distractive: 88/619, 14.3%; addictive: 90/619, 14.5%). Adolescents selected “Provides an escape” more to describe their own relationship with technology. Whereas, they selected “It's just a tool” and “Creates Barrier” more to describe others' relationship with technology. These trends are consistent across ages and genders. In addition, adolescents' aspirations for their relationship with their personal technology varied across ages: 13 to 15-year olds' top choice was “best friend”, 16 to 17-year olds’ top choice was “I don't believe in personal connection with mobile technology,” and 18 to 19-year olds’ top choice was “My personal assistant.” Conclusions Our 3-lens method allows us to examine how adolescents perceive their relationship with personal technology in comparison to others, as well as their future technological aspirations. Our findings suggest that adolescents see both communalities as well as differences in their own and others' relationships with technology. Their future aspirations for personal technology vary across age and gender. These preliminary findings will be examined further in our follow-up research.
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