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1.
Trials ; 23(1): 585, 2022 Jul 22.
Article in English | MEDLINE | ID: covidwho-2316419

ABSTRACT

BACKGROUND: Autism is a neurodevelopmental disability affecting over 1% of UK children. The period following a child's autism diagnosis can present real challenges in adaptation for families. Twenty to 50% of caregivers show clinically significant levels of mental health need within the post-diagnostic period and on an ongoing basis. Best practice guidelines recommend timely post-diagnostic family support. Current provision is patchy, largely unevidenced, and a source of dissatisfaction for both families and professionals. There is a pressing need for an evidenced programme of post-diagnostic support focusing on caregiver mental health and adjustment, alongside autism psycho-education. This trial tests the clinical and cost-effectiveness of a new brief manualised psychosocial intervention designed to address this gap. METHODS: This is a multi-centre two-parallel-group single (researcher)-blinded randomised controlled trial of the Empower-Autism programme plus treatment-as-usual versus usual local post-diagnostic offer plus treatment-as-usual. Caregivers of children aged 2-15 years with a recent autism diagnosis will be recruited from North West England NHS or local authority centres. Randomisation is individually by child, with one "index" caregiver per child, stratified by centre, using 2:1 randomisation ratio to assist recruitment and timely intervention. Empower-Autism is a group-based, manualised, post-diagnostic programme that combines autism psycho-education and psychotherapeutic components based on Acceptance and Commitment Therapy to support caregiver mental health, stress management and adjustment to their child's diagnosis. The comparator is any usual local group-based post-diagnostic psycho-education offer. Receipt of services will be specified through health economic data. PRIMARY OUTCOME: caregiver mental health (General Health Questionnaire-30) at 52-week follow-up. SECONDARY OUTCOMES: key caregiver measures (wellbeing, self-efficacy, adjustment, autism knowledge) at 12-, 26- and 52-week follow-up and family and child outcomes (wellbeing and functioning) at 52-week endpoint. SAMPLE: N=380 (approximately 253 intervention/127 treatment-as-usual). Primary analysis will follow intention-to-treat principles using linear mixed models with random intercepts for group membership and repeated measures. Cost-effectiveness acceptability analyses will be over 52 weeks, with decision modelling to extrapolate to longer time periods. DISCUSSION: If effective, this new approach will fill a key gap in the provision of evidence-based care pathways for autistic children and their families. TRIAL REGISTRATION: ISRCTN 45412843 . Prospectively registered on 11 September 2019.


Subject(s)
Acceptance and Commitment Therapy , Autism Spectrum Disorder , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/therapy , Caregivers/psychology , Child , Cost-Benefit Analysis , Humans , Mental Health , Quality of Life , United Kingdom
2.
J Child Psychol Psychiatry ; 64(5): 834-838, 2023 05.
Article in English | MEDLINE | ID: covidwho-2292329

ABSTRACT

Development of standardized diagnostic instruments has facilitated the systematic characterization of individuals with autism spectrum disorders (ASD) in clinical and research settings. However, overemphasis on scores from specific instruments has significantly detracted from the original purpose of these tools. Rather than provide a definitive "answer," or even a confirmation of diagnosis, standardized diagnostic instruments were designed to aid clinicians in the process of gathering information about social communication, play, and repetitive and sensory behaviors relevant to diagnosis and treatment planning. Importantly, many autism diagnostic instruments are not validated for certain patient populations, including those with severe vision, hearing, motor, and/or cognitive impairments, and they cannot be administered via a translator. In addition, certain circumstances, such as the need to wear personal protective equipment (PPE), or behavioral factors (e.g., selective mutism) may interfere with standardized administration or scoring procedures, rendering scores invalid. Thus, understanding the uses and limitations of specific tools within specific clinical or research populations, as well as similarities or differences between these populations and the instrument validation samples, is paramount. Accordingly, payers and other systems must not mandate the use of specific tools in cases when their use would be inappropriate. To ensure equitable access to appropriate assessment and treatment services, it is imperative that diagnosticians be trained in best practice methods for the assessment of autism, including if, how, and when to appropriately employ standardized diagnostic instruments.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Child Behavior Disorders , Child , Humans , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/psychology , Autistic Disorder/diagnosis , Communication , Psychiatric Status Rating Scales
3.
BMC Pediatr ; 23(1): 32, 2023 01 20.
Article in English | MEDLINE | ID: covidwho-2295149

ABSTRACT

BACKGROUND: Few studies have estimated the real prevalence of neurodevelopmental disorders according to the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) in Spain and worldwide. However, there are disparate prevalence figures. We consider research in this field essential to improve early detection, secondary prevention, and health planning. METHODS: The Minikid ADHD and TICS-Mini International Neuropsychiatric Interview for Children and Adolescents, the Autism Spectrum Quotient (Children's version, AQ- Child) and a protocol of general medical questions were administered for screening purposes. The PROLEXIA battery for children aged from 4 to 6 years was used for direct assessments. Parents provided information on emotional, medical, and school aspects. The final population evaluated using these tools consisted of 291 6-year-old subjects. RESULTS: The overall risk of presenting with a neurodevelopmental disorder was 55.4%. A 23.4% risk of presenting with attention-deficit/hyperactivity disorder (ADHD) in any modality (inattentive, hyperactive-impulsive and combined), a 2.8% risk of developing autism spectrum disorder (ASD), a 30.6% risk of presenting with a learning disorder with reading difficulties, a 5.5% risk of tics and a 22.5% risk of language problems (incomprehensible language or minor language problems) were detected in the sample. The most common combination of disorders was learning and language difficulties, accounting for 6.9% of the sample. The second most frequent combination was the presence of learning and language difficulties and ADHD, accounting for 4.5% of the sample. CONCLUSIONS: The prevalence of risks detected in our sample seems to be consistent with national and international studies. A significant proportion of our sample had never been previously diagnosed (85%), so early detection programs are recommended.


Subject(s)
Attention Deficit Disorder with Hyperactivity , Autism Spectrum Disorder , Neurodevelopmental Disorders , Tics , Adolescent , Humans , Child , Child, Preschool , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/epidemiology , Autism Spectrum Disorder/psychology , Prevalence , Spain/epidemiology , Tics/complications , Tics/epidemiology , Attention Deficit Disorder with Hyperactivity/diagnosis , Attention Deficit Disorder with Hyperactivity/epidemiology , Attention Deficit Disorder with Hyperactivity/therapy , Neurodevelopmental Disorders/diagnosis , Neurodevelopmental Disorders/epidemiology , Neurodevelopmental Disorders/prevention & control , Comorbidity , Referral and Consultation , Primary Health Care
4.
MMWR Surveill Summ ; 72(1): 1-15, 2023 03 24.
Article in English | MEDLINE | ID: covidwho-2280973

ABSTRACT

Problem/Condition: Autism spectrum disorder (ASD). Period Covered: 2020. Description of System: The Autism and Developmental Disabilities Monitoring Network is an active surveillance program that estimates prevalence and characteristics of ASD and monitors timing of ASD identification among children aged 4 and 8 years. In 2020, a total of 11 sites (located in Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah, and Wisconsin) conducted surveillance of ASD among children aged 4 and 8 years and suspected ASD among children aged 4 years. Surveillance included children who lived in the surveillance area at any time during 2020. Children were classified as having ASD if they ever received 1) an ASD diagnostic statement in an evaluation, 2) a special education classification of autism (eligibility), or 3) an ASD International Classification of Diseases (ICD) code (revisions 9 or 10). Children aged 4 years were classified as having suspected ASD if they did not meet the case definition for ASD but had a documented qualified professional's statement indicating a suspicion of ASD. This report focuses on children aged 4 years in 2020 compared with children aged 8 years in 2020. Results: For 2020, ASD prevalence among children aged 4 years varied across sites, from 12.7 per 1,000 children in Utah to 46.4 in California. The overall prevalence was 21.5 and was higher among boys than girls at every site. Compared with non-Hispanic White children, ASD prevalence was 1.8 times as high among Hispanic, 1.6 times as high among non-Hispanic Black, 1.4 times as high among Asian or Pacific Islander, and 1.2 times as high among multiracial children. Among the 58.3% of children aged 4 years with ASD and information on intellectual ability, 48.5% had an IQ score of ≤70 on their most recent IQ test or an examiner's statement of intellectual disability. Among children with a documented developmental evaluation, 78.0% were evaluated by age 36 months. Children aged 4 years had a higher cumulative incidence of ASD diagnosis or eligibility by age 48 months compared with children aged 8 years at all sites; risk ratios ranged from 1.3 in New Jersey and Utah to 2.0 in Tennessee. In the 6 months before the March 2020 COVID-19 pandemic declaration by the World Health Organization, there were 1,593 more evaluations and 1.89 more ASD identifications per 1,000 children aged 4 years than children aged 8 years received 4 years earlier. After the COVID-19 pandemic declaration, this pattern reversed: in the 6 months after pandemic onset, there were 217 fewer evaluations and 0.26 fewer identifications per 1,000 children aged 4 years than children aged 8 years received 4 years earlier. Patterns of evaluation and identification varied among sites, but there was not recovery to pre-COVID-19 pandemic levels by the end of 2020 at most sites or overall. For 2020, prevalence of suspected ASD ranged from 0.5 (California) to 10.4 (Arkansas) per 1,000 children aged 4 years, with an increase from 2018 at five sites (Arizona, Arkansas, Maryland, New Jersey, and Utah). Demographic and cognitive characteristics of children aged 4 years with suspected ASD were similar to children aged 4 years with ASD. Interpretation: A wide range of prevalence of ASD by age 4 years was observed, suggesting differences in early ASD identification practices among communities. At all sites, cumulative incidence of ASD by age 48 months among children aged 4 years was higher compared with children aged 8 years in 2020, indicating improvements in early identification of ASD. Higher numbers of evaluations and rates of identification were evident among children aged 4 years until the COVID-19 pandemic onset in 2020. Sustained lower levels of ASD evaluations and identification seen at a majority of sites after the pandemic onset could indicate disruptions in typical practices in evaluations and identification for health service providers and schools through the end of 2020. Sites with more recovery could indicate successful strategies to mitigate service interruption, such as pivoting to telehealth approaches for evaluation. Public Health Action: From 2016 through February of 2020, ASD evaluation and identification among the cohort of children aged 4 years was outpacing ASD evaluation and identification 4 years earlier (from 2012 until March 2016) among the cohort of children aged 8 years in 2020 . From 2016 to March 2020, ASD evaluation and identification among the cohort of children aged 4 years was outpacing that among children aged 8 years in 2020 from 2012 until March 2016. The disruptions in evaluation that coincided with the start of the COVID-19 pandemic and the increase in prevalence of suspected ASD in 2020 could have led to delays in ASD identification and interventions. Communities could evaluate the impact of these disruptions as children in affected cohorts age and consider strategies to mitigate service disruptions caused by future public health emergencies.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , COVID-19 , Male , Female , Humans , Child , United States/epidemiology , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/epidemiology , Autistic Disorder/diagnosis , Autistic Disorder/epidemiology , Developmental Disabilities/epidemiology , Pandemics , Population Surveillance , COVID-19/epidemiology , Utah , Prevalence
5.
Sci Rep ; 13(1): 4312, 2023 03 15.
Article in English | MEDLINE | ID: covidwho-2279176

ABSTRACT

In the present study, we aimed to quantify the effects of COVID-19 restrictions and speech treatment approaches during lockdowns on autistic children using CBCL and neuro-fuzzy artificial intelligence method. In this regard, a survey including CBCL questionnaire is prepared using online forms. In total, 87 children with diagnosed Autism spectrum disorders (ASD) participated in the survey. The influences of three treatment approaches of in-person, telehealth and public services along with no-treatment condition during lockdown were the main factors of the investigation. The main output factors were internalized and externalized problems in general and their eight subcategory syndromes. We examined the reports by parents/caregivers to find correlation between treatments and CBCL listed problems. Moreover, comparison of the eight syndromes rating scores from pre-lockdown to post-lockdown periods were performed. In addition, artificial intelligence method were engaged to find the influence of speech treatment during restrictions on the level of internalizing and externalizing problems. In this regard, a fully connected adaptive neuro fuzzy inference system is employed with type and duration of treatments as input and T-scores of the syndromes are the output of the network. The results indicate that restrictions alleviate externalizing problems while intensifying internalizing problems. In addition, it is concluded that in-person speech therapy is the most effective and satisfactory approach to deal with ASD children during stay-at-home periods.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , COVID-19 , Humans , Child , Artificial Intelligence , Speech Therapy , COVID-19/therapy , Communicable Disease Control , Autism Spectrum Disorder/therapy , Autism Spectrum Disorder/diagnosis
6.
Neurosci Biobehav Rev ; 145: 105021, 2023 02.
Article in English | MEDLINE | ID: covidwho-2270072

ABSTRACT

In recent years, there has been a great interest in utilizing technology in mental health research. The rapid technological development has encouraged researchers to apply technology as a part of a diagnostic process or treatment of Neurodevelopmental Disorders (NDDs). With the large number of studies being published comes an urgent need to inform clinicians and researchers about the latest advances in this field. Here, we methodically explore and summarize findings from studies published between August 2019 and February 2022. A search strategy led to the identification of 4108 records from PubMed and APA PsycInfo databases. 221 quantitative studies were included, covering a wide range of technologies used for diagnosis and/or treatment of NDDs, with the biggest focus on Autism Spectrum Disorder (ASD). The most popular technologies included machine learning, functional magnetic resonance imaging, electroencephalogram, magnetic resonance imaging, and neurofeedback. The results of the review indicate that technology-based diagnosis and intervention for NDD population is promising. However, given a high risk of bias of many studies, more high-quality research is needed.


Subject(s)
Attention Deficit Disorder with Hyperactivity , Autism Spectrum Disorder , Neurodevelopmental Disorders , Humans , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/therapy , Autism Spectrum Disorder/epidemiology , Neurodevelopmental Disorders/diagnosis , Neurodevelopmental Disorders/therapy , Magnetic Resonance Imaging , Mental Health
7.
J Dev Behav Pediatr ; 44(2): e73-e79, 2023.
Article in English | MEDLINE | ID: covidwho-2232261

ABSTRACT

OBJECTIVE: The aim of this study was to identify barriers and improve access to services for children diagnosed with autism spectrum disorder (ASD) during the COVID-19 pandemic. METHODS: Sixty-two patients diagnosed with ASD between March 23 and June 30, 2020, at a large urban safety net hospital were identified by chart review. Patients were called from January to March 2021 and queried regarding access to services. Brief interventions were provided as part of a modified Plan-Do-Study-Act approach. A second chart review was conducted between April and May 2021 to determine whether families accessed any additional services. RESULTS: At the time of initial evaluation, 12 patients (19%) had been able to access all recommended services, 32 (52%) had been able to access some recommended services, and 9 (15%) were not able to access any services. Service levels for 9 families (15%) were undetermined. Sixteen patients (26%) lacked any follow-up with their developmental behavioral pediatrician since their initial evaluation. Thirty patients (48%) reported changes to their individualized educational program or early intervention services, and 17 patients (27%) were receiving in-home applied behavior analysis. After the brief intervention, 13 patients had accessed new services, and 9 patients previously lost to follow-up had completed an appointment. CONCLUSION: Patients diagnosed with ASD in the spring of 2020 had significant difficulty accessing community services. The transition to telemedicine exacerbated this hospital's difficulty contacting patients for follow-up. Additional research is needed to fully characterize the disruptions to services experienced by patients diagnosed with ASD during the pandemic and to increase accessibility and equity of care.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , COVID-19 , Child , Humans , Autism Spectrum Disorder/diagnosis , Pandemics , Quality Improvement , Health Services Accessibility , COVID-19 Testing
8.
Autism ; 27(5): 1362-1376, 2023 Jul.
Article in English | MEDLINE | ID: covidwho-2195216

ABSTRACT

LAY ABSTRACT: The diagnosis of autism spectrum disorder (ASD) has traditionally been made through in-person evaluation. While the COVID-19 pandemic disrupted access to ASD services, there has been remarkable growth in research focused on novel ASD diagnostic practices, including the use of telemedicine. We implemented a standard ASD tele-assessment evaluation procedure, including use of a novel remote clinician-coached, caregiver-delivered ASD assessment tool (TELE-ASD-PEDS; TAP), with the goal of continuing to provide diagnostic services to young children and their families during the pandemic. We examined the relationship between child characteristics and diagnostic outcome for 335 children, ages 14-78 months, who received ASD tele-assessment conducted by psychologists and pediatricians in an outpatient clinic of a Midwestern academic medical center. We found that clinicians could make a determination about ASD diagnosis for most children (85%) evaluated using tele-assessment. Child clinical characteristics, including TAP scores and clinician ratings of ASD symptoms, were related to diagnostic outcome (i.e. diagnosis of ASD, no ASD, and Unsure about ASD). When all clinical characteristics were examined together, the presence of specific repetitive behaviors predicted ASD diagnosis. We also found that the TAP is effective for making an ASD diagnosis when used as part of comprehensive tele-assessment evaluation in children ⩾ 36 months of age with delayed language. Our study adds to an increasing body of research supporting use of tele-assessment for diagnosis of ASD. Although further research is needed, telemedicine may help families from different backgrounds and geographic locations to access high-quality diagnostic services.


Subject(s)
Autism Spectrum Disorder , COVID-19 , Humans , Child , Child, Preschool , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/epidemiology , Pandemics , Cognition , Caregivers , COVID-19 Testing
9.
J Autism Dev Disord ; 52(12): 5114-5125, 2022 Dec.
Article in English | MEDLINE | ID: covidwho-2128880

ABSTRACT

Logistic regression was used to examine the use of Autism Spectrum diagnostic categories from pre-COVID-19 in-person evaluations and COVID-19 telehealth evaluations at a specialist community mental health clinic. The diagnostic classification for children 0-5 (DC: 0-5) affords a wider range of diagnoses that allowed for inferences of clinician certainty of diagnosis. Use of full criteria diagnoses was significantly lower from telehealth evaluations during the pandemic, and was less certain for younger children, some non-English speakers, and children reporting Native American/Alaska Native race. Higher Child Behavior Checklist (CBCL) ASD subscale scores, lower CBCL total scores, and global developmental delay diagnoses predicted greater use of full ASD diagnoses. Findings suggest factors that could identify children appropriate for telehealth evaluations.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , COVID-19 , Child Development Disorders, Pervasive , Telemedicine , Child , Humans , Autistic Disorder/diagnosis , Autism Spectrum Disorder/diagnosis , COVID-19/diagnosis
10.
Trials ; 23(1): 691, 2022 Aug 19.
Article in English | MEDLINE | ID: covidwho-2002217

ABSTRACT

BACKGROUND: The COVID-19 pandemic impacted nearly all facets of our daily lives, and clinical research was no exception. Here, we discuss the impact of the pandemic on our ongoing, three-arm randomized controlled trial (RCT) Sensory Integration Therapy (SIT) in Autism: Mechanisms and Effectiveness (NCT02536365), which investigates the immediate and sustained utility of SIT to strengthen functional daily-living skills and minimize the presence of maladaptive sensory behaviors in autistic children. MAIN TEXT: In this text, we detail how we navigated the unique challenges that the pandemic brought forth between the years 2020 and 2021, including the need to rapidly adjust our study protocol, recruitment strategy, and in-person assessment battery to allow for virtual recruitment and data collection. We further detail how we triaged participants and allocated limited resources to best preserve our primary outcome measures while prioritizing the safety of our participants and study team. We specifically note the importance of open and consistent communication with all participating families throughout the pandemic in ensuring all our protocol adjustments were successfully implemented. CONCLUSIONS: Though the COVID-19 pandemic resulted in an unprecedented interruption to in-person clinical research, clinical trials have always been and will continue to be at risk for unforeseen interruptions, whether from world events or participants' personal circumstances. By presenting our steps to preserving this RCT throughout the pandemic, we offer suggestions for successfully managing unexpected interruptions to research. Ideally, by taking these into account, future RCTs may be increasingly prepared to minimize the impact of these potential interruptions to research.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , COVID-19 , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/therapy , Child , Humans , Pandemics
11.
Autism Res ; 15(10): 1909-1916, 2022 10.
Article in English | MEDLINE | ID: covidwho-1995524

ABSTRACT

This study evaluates an online ADOS-2 Module 4 administration. Adolescents and adults with (n = 24; 7 females) and without (n = 13; 5 females) a history of autism spectrum disorder (ASD) completed the ADOS-2 Module 4 via videoconference. Parents or caregivers completed the Parent/Caregiver Form of the Vineland Adaptive Behavior Scales and the Achenbach Adult Behavior Checklist. The ADOS-2 was reviewed and scored by five trained clinicians and supervised by a senior clinician with established research reliability. The autistic group's scores differed on ADOS total (Calibrated Severity Score, WPS instrument) and domain scores, KSADS domain scores, and Achenbach T-scores. Inter-rater reliability was "moderate" (κ = 0.732), and percentage item-wise agreement was r = 0.69. The online ADOS-2 showed significant convergence with parent-reported assessments of ASD-relevant symptoms and characteristics, suggesting it was a valid assessment. While any online assessments must be used with caution, results suggest that the approach described here could have sufficient validity and reliability to fill the urgent need to assess and evaluate ASD symptomatology, as one component of a thorough clinical evaluation of ASD-related behaviors. LAY SUMMARY: In this exploratory study, we asked whether it was possible to give the ADOS-2 to adolescents and adults in a completely online way. Results showed that expert clinicians agreed on 69% of ADOS-2 items; also, participants with autism had higher scores on all parts of the ADOS-2. The online ADOS-2 scores had strong and significant relationships with parents' reports of friendship and social skills. While we need more research that tests this method, this way of doing the ADOS-2 online may be useful for clinicians and researchers who have an urgent need to evaluate autism during the pandemic.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Adolescent , Adult , Autism Spectrum Disorder/diagnosis , Autistic Disorder/diagnosis , Female , Humans , Pandemics , Parents , Reproducibility of Results
12.
J Autism Dev Disord ; 52(12): 5266-5273, 2022 Dec.
Article in English | MEDLINE | ID: covidwho-1982235

ABSTRACT

A growing literature supports the feasibility and validity of telehealth-based assessments for autism spectrum disorder (ASD). Better understanding families' experiences is crucial for sustained use beyond the COVID-19 pandemic. This study qualitatively examines caregiver experiences with the Telehealth Evaluation of Development for Infants (TEDI) protocol to better understand benefits and challenges of telehealth-based evaluations. Caregivers (N = 32) completed an online survey following a telehealth-based evaluation with their 6-12 month-old infants. Open-ended text responses to queries about perceived benefits, challenges, and suggestions for future adaptations were coded. Most caregivers reported positive experiences with minor feedback relating to tailoring of individual needs. Responses suggest the TEDI is a feasible approach and provide guidance for components of successful telehealth evaluations more broadly.


Subject(s)
Autism Spectrum Disorder , COVID-19 , Telemedicine , Infant , Humans , Caregivers , Autism Spectrum Disorder/diagnosis , Pandemics , Telemedicine/methods
13.
J Dev Behav Pediatr ; 43(5): 262-272, 2022.
Article in English | MEDLINE | ID: covidwho-1961179

ABSTRACT

OBJECTIVE: The objective of this study was to present clinician and caregiver perspectives regarding telehealth neurodevelopmental evaluation delivered at the onset of the coronavirus disease 2019 (COVID-19) pandemic. Specifically, we sought to describe telehealth neurodevelopmental evaluations, examine associations between child characteristics and diagnostic factors, determine the impact of technology and family barriers, and report on clinician and caregiver satisfaction with telehealth evaluation. METHODS: In response to the COVID-19 pandemic, in-person clinical services at a large children's hospital neurodevelopmental clinic were transitioned to telehealth. Data are presented for 254 remote evaluations of children (18-212 months; referral concern: 51% autism spectrum disorder [ASD], 24% developmental delay/intellectual disability, 25% other neurodevelopmental concern) conducted from May to July 2020. Data were gathered from electronic health records as well as clinician and caregiver surveys. RESULTS: A clinical diagnosis was provided in 72% of telehealth evaluations. Clinicians rated diagnostic certainty as "completely" or "somewhat" certain in 74% of evaluations. Certainty ratings were higher for evaluations in which a diagnosis of ASD was provided. Although technology and family challenges were reported, clinicians rarely identified these as disruptive to the evaluation process. Clinicians reported satisfaction with various aspects of delivering telehealth. Caregivers endorsed high satisfaction with receipt of telehealth and reduced travel burden. CONCLUSION: The COVID-19 pandemic has rapidly transformed service delivery for individuals with neurodevelopmental disabilities and provided an unprecedented opportunity to evaluate the deployment of telehealth evaluation to meet the need for ongoing diagnostic care. Our findings suggest that telehealth holds significant promise for neurodevelopmental assessment both within the context of a global pandemic and beyond.


Subject(s)
Autism Spectrum Disorder , COVID-19 , Telemedicine , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/epidemiology , Autism Spectrum Disorder/therapy , COVID-19/epidemiology , Caregivers , Child , Humans , Pandemics
14.
Res Dev Disabil ; 125: 104232, 2022 Jun.
Article in English | MEDLINE | ID: covidwho-1852008

ABSTRACT

BACKGROUND: The unprecedented challenges introduced by the Coronavirus disease 2019 (COVID-19) pandemic may be amplified for children with autism spectrum disorder (ASD) and their families. AIMS: The current study aimed to describe the experiences of children with ASD and their families during the pandemic and to identify the needs of this community during emergency situations. METHODS AND PROCEDURES: Participants were 122 parents of 122 children and adolescents (aged 3-18 years; one parent per family participated) with ASD living in Arizona, USA who participated in the first time point (July/August 2020) of a larger longitudinal survey study. A qualitative approach based in grounded theory methodology was used to analyze six open-ended survey questions. OUTCOMES AND RESULTS: The resulting conceptual model included a core category, Longing for Stability, and four main categories: Public Health Measures Yielding New Challenges and Unexpected Gains, Experiencing Abrupt Changes across Developmental Domains, Changing Family Dynamics, and Protective Factors. CONCLUSIONS: Findings add to limited research examining whether, and how, emergency events uniquely impact the ASD community, identifying potential methods by which services can be proactively adapted to best support the needs of children with ASD.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , COVID-19 , Adolescent , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/epidemiology , COVID-19/epidemiology , Child , Humans , Pandemics , Parents
15.
J Autism Dev Disord ; 52(12): 5099-5113, 2022 Dec.
Article in English | MEDLINE | ID: covidwho-1844418

ABSTRACT

The present study examines provider and caregiver satisfaction with telehealth evaluation of autism spectrum disorder (ASD) in young children during the coronavirus SARS-CoV-2 (COVID-19) pandemic. A telehealth model of ASD evaluation was implemented with 308 children ages 14 to 78 months between May 2020 to June 2021. Data were gathered from electronic health records, autism-specific telehealth diagnostic tools, and post-evaluation surveys. Overall, the majority of providers and caregivers were satisfied with telehealth ASD evaluation. Multiple variables were associated with ratings of satisfaction, differing by providers and caregivers. Findings have important implications for the feasibility and acceptability of telehealth ASD evaluations, in addition to key factors to consider in optimizing and sustaining telehealth evaluations beyond the COVID-19 pandemic.


Subject(s)
Autism Spectrum Disorder , COVID-19 , Telemedicine , Child , Humans , Child, Preschool , Infant , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/epidemiology , Autism Spectrum Disorder/therapy , Pandemics , Caregivers , SARS-CoV-2 , Personal Satisfaction
16.
Acad Pediatr ; 22(8): 1384-1389, 2022.
Article in English | MEDLINE | ID: covidwho-1797340

ABSTRACT

OBJECTIVE: To assess the impact of the COVID-19 pandemic on screening for autism spectrum disorder (ASD) and screening equity among eligible children presenting for well-child care in a large primary care pediatric network, we compared rates of ASD screening completion and positivity during the pandemic to the year prior, stratified by sociodemographic factors. METHODS: Patients who presented for in-person well-child care at 16 to 26 months between March 1, 2020 and February 28, 2021 (COVID-19 cohort, n = 24,549) were compared to those who presented between March 1, 2019 and February 29, 2020 (pre-COVID-19 cohort, n = 26,779). Demographics and rates of completion and positivity of the Modified Checklist for Autism in Toddlers with Follow-up (M-CHAT/F) were calculated from the electronic health record and compared by cohort using logistic regression models. RESULTS: Total eligible visits decreased by 8.3% between cohorts, with a greater decline in Black and publicly insured children. In the pre-COVID-19 cohort, 89.0% of eligible children were screened at least once, compared to 86.4% during the pandemic (P < 0.001). Significant declines in screening completion were observed across all sociodemographic groups except among Asian children, with the sharpest declines among non-Hispanic White children. Sociodemographic differences were not observed in screen-positive rates by cohort. CONCLUSIONS: Well-child visits and ASD screenings declined across groups, but with different patterns by race and ethnicity during the COVID-19 pandemic. Findings regarding screen-completion rates should not be interpreted as a decline in screening disparities, given differences in who presented for care. Strategies for catch-up screening for all children should be considered.


Subject(s)
Autism Spectrum Disorder , COVID-19 , Humans , Child , Infant , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/epidemiology , COVID-19/diagnosis , Pandemics , Mass Screening , Primary Health Care
20.
PLoS One ; 17(2): e0263062, 2022.
Article in English | MEDLINE | ID: covidwho-1690733

ABSTRACT

BACKGROUND: Considering the COVID-19 pandemic, understanding the reliability, validity, social validity, and feasibility of using telehealth to diagnose ASD is a critical public health issue. This paper examines evidence supporting the use of telehealth methods to diagnose ASD and outlines the necessary modifications and adaptations to support telehealth diagnosis. METHODS AND PROCEDURES: Studies were identified by searching PubMed and PsychInfo electronic databases and references lists of relevant articles. Only peer reviewed articles published in English with a focus on using telehealth for the purposes of diagnosing ASD were included. Searches were conducted through June 3rd, 2021. OUTCOMES AND RESULTS: A total of 10 studies were identified as meeting inclusion criteria. Of the eight papers that reported on reliability (e.g., accuracy), telehealth methods to diagnose ASD were between 80-91% accurate when compared with traditional in-person diagnosis. Six studies reported on validity (i.e., sensitivity and/or specificity). All six studies calculated sensitivity, with values ranging from 75% and 100%. Five of the six studies calculated specificity, with values ranging from 68.75% and 100%. The seven papers that reported social validity indicated that caregivers, as well as adult participants and clinicians, were mostly satisfied with telehealth. Feasibility was reported by seven studies and suggests that telehealth methods appear largely viable, though some challenges were reported. CONCLUSIONS AND IMPLICATIONS: Although findings reviewed here are promising, more research is needed to verify the accuracy, validity, and feasibility of utilizing telehealth to diagnose ASD. Studies with larger sample sizes and samples across sites will be critical, as these will allow clinicians to identify subjects most likely to benefit from telehealth as well as those more likely to require an in-person assessment. This research is important not only due to the current pandemic, but also due to increased prevalence rates of ASD and an insufficient number of diagnostic providers-particularly in rural and/or otherwise under-served communities.


Subject(s)
Autism Spectrum Disorder/diagnosis , Telemedicine , Feasibility Studies , Humans , Outcome Assessment, Health Care , Reproducibility of Results
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