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Zhang JJ, Wang EN. Enhancing autism care through remote support: A family-centered approach. World J Psychiatry 2025; 15:102645. [DOI: 10.5498/wjp.v15.i4.102645] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/24/2024] [Revised: 01/16/2025] [Accepted: 02/12/2025] [Indexed: 03/25/2025] Open
Abstract
Autism spectrum disorder (ASD) poses significant challenges for families, with limited access to specialized care being a critical concern. The coronavirus disease 2019 pandemic has accelerated the adoption of remote support, highlighting its potential to enhance family-centered care for children with ASD. In this editorial, we comment on the article by Lu et al, emphasizing the effectiveness of integrating remote support courses with traditional caregiver-mediated interventions. We further explore the benefits of remote support in delivering family-centered care, summarize the essential components of effective family-centered remote support, outline key considerations for implementation, and discuss potential future research directions. We conclude that family-centered remote support has the potential to significantly improve outcomes and quality of life for individuals with ASD and their families.
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Affiliation(s)
- Jun-Jie Zhang
- School of Psychology, Northwest Normal University, Lanzhou 730070, Gansu Province, China
| | - En-Na Wang
- School of Psychology, Northwest Normal University, Lanzhou 730070, Gansu Province, China
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Cuesta-Gómez JL, Gatica-Bahamonde G, Ruggieri V, Roman-Urrestarazu A, van Kessel R. COVID-19, Autism, and Isolation: Good Practices for Continuity of Care During the Pandemic. SOCIAL WORK IN PUBLIC HEALTH 2025; 40:119-132. [PMID: 39881479 DOI: 10.1080/19371918.2025.2449966] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 01/31/2025]
Abstract
The COVID-19 pandemic, and particularly the associated conditions of isolation, has detrimental effects on the mental health of the population that are not yet fully understood. Variables such as individual stress, anxiety, and tolerance to uncertainty may play a role in the ability of individuals to adapt to the isolation situation. In this context, it is necessary to pay attention to population groups that present difficulties in adapting to this situation of uncertainty, such as people with autism. This narrative review of the evidence has as objectives to explore (1) the effect that the autism community has experienced as a result of the lockdown and isolation due to COVID-19; and (2) opportunities for health, educational, and social services providers to support people with autism and their families in isolation in an attempt to ensure that specialized interventions continue as much as possible. We map suggestions regarding information delivery, time management at home, recognition and emotional expression, and some suggestions to maintain support with service providers.
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Affiliation(s)
- José L Cuesta-Gómez
- Cátedra Miradas por el Autismo, Departamento de Cs. De la Educación, Facultad de Educación, Universidad de Burgos, Burgos, España
| | - Gabriel Gatica-Bahamonde
- Departmento de Salud Mental y Psiquiatría, Facultad de Medicina, Universidad de la Frontera, Claro, CP, Chile
- Department of International Health, Faculty of Health, Medicine and Life Sciences, University of Maastricht, Maastricht, Netherlands
| | - Victor Ruggieri
- Comité Científico de la Fundación Garrahan, Hospital de Pediatría J. P. Garrahan, Buenos Aires, CP, Argentina
| | - Andres Roman-Urrestarazu
- Mental Health, Policy and Economics Group, Department of Psychiatry, University of Cambridge, Cambridge, UK
- Institute of Public Health, University of Cambridge
| | - Robin van Kessel
- Department of International Health, Faculty of Health, Medicine and Life Sciences, University of Maastricht, Maastricht, Netherlands
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Wagner L, Foster T, Bonnet K, Spitler AK, Schlundt D, Warren Z. Identifying the unique determinants influencing rural families' engagement with an existing tele-assessment approach for autism identification: A qualitative study. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2024:13623613241307078. [PMID: 39704165 DOI: 10.1177/13623613241307078] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/21/2024]
Abstract
LAY ABSTRACT It is often difficult for families in rural communities to access autism evaluations for their children when they have concerns. Tele-assessment could make it easier for them to see specialists who give autism diagnoses, but we still need to figure out the best way to carry out these approaches. To understand how rural families view tele-assessment, as well as barriers they may face, we held focus groups with caregivers of children with autism and local service providers in the Southeastern United States. We met with 22 caregivers and 10 providers. We analyzed the discussions and found four key attitudes: (1) questions about whether autism assessment can really be done online; (2) level of trust in the evaluation process, especially tele-assessment; (3) beliefs about whether tele-assessment is practical for families; and (4) worries about privacy. These attitudes and beliefs are shaped by various factors at different stages, indicating that we need to improve tele-assessment by better supporting everyone involved at different stages of the tele-assessment process. This research highlights important areas for improvement to provide fair access to tele-assessment for rural families (e.g. creating education materials, conducting barrier counseling).
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Hodge A, Sutherland R, Ong N, Chan E, Barnett D, Bennett B, Boulton K, Francis D, Guastella A, Papanicolaou A, Tomsic G, Williamsz M, Silove N. Telehealth assessment of autism in preschoolers using the TELE-ASD-PEDS: A pilot clinical investigation. INTERNATIONAL JOURNAL OF SPEECH-LANGUAGE PATHOLOGY 2024; 26:767-783. [PMID: 38105699 DOI: 10.1080/17549507.2023.2270187] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 12/19/2023]
Abstract
PURPOSE Appropriate early intervention is beneficial but dependent on accurate and timely diagnoses. This has been affected by long waiting lists for face-to-face clinical services, in part due to pandemic lockdowns, with telehealth introduced in many services to continue clinical services. This pilot clinical study investigated the feasibility of integrating a specially-designed telepractice autism assessment tool into a tertiary diagnostic service. METHOD Eighteen boys (2;4-5;1) participated in the study. Assessment was undertaken as per standard practice (parent interview, questionnaires, review of reports), with an additional telepractice assessment, included in place of face-to-face assessment, to provide clinicians with an observation of the children's communication, behaviours, and interests. Ten parents provided feedback via semi-structured interviews. RESULT The TELE-ASD-PEDS was a feasible assessment tool in terms of administration, clinical experience, and information gained through the assessment process. Parents reported mostly positive experiences of the TELE-ASD-PEDS and made suggestions for improvements for future use of this tool. CONCLUSION It is possible to obtain useful information about a child's autism-specific behaviours using the activities in the TELE-ASD-PEDS. This information can be combined with clinical history from parents using the DSM-5 framework to provide a gold standard assessment for autism.
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Affiliation(s)
- Antoinette Hodge
- Child Development Unit, The Children's Hospital at Westmead, Westmead, Australia
| | - Rebecca Sutherland
- Discipline of Speech Pathology, Faculty of Medicine and Health, Univeristy of Sydney, Sydney, Australia
| | - Natalie Ong
- Child Development Unit, The Children's Hospital at Westmead, Westmead, Australia
- Discipline of Speech Pathology, Faculty of Medicine and Health, Univeristy of Sydney, Sydney, Australia
- The School of Women's and Children's Health, University of New South Wales, Sydney, Australia
| | - Esther Chan
- Child Development Unit, The Children's Hospital at Westmead, Westmead, Australia
| | - Diana Barnett
- Child Development Unit, The Children's Hospital at Westmead, Westmead, Australia
| | - Beverley Bennett
- Child Development Unit, The Children's Hospital at Westmead, Westmead, Australia
| | - Kelsie Boulton
- Discipline of Speech Pathology, Faculty of Medicine and Health, Univeristy of Sydney, Sydney, Australia
| | - Deanna Francis
- Child Development Unit, The Children's Hospital at Westmead, Westmead, Australia
- Black Dog Institute, University of New South Wales, Sydney, Australia, and
- School of Psychological Sciences, Macquarie University, Sydney, Australia
| | - Adam Guastella
- Discipline of Speech Pathology, Faculty of Medicine and Health, Univeristy of Sydney, Sydney, Australia
| | - Angela Papanicolaou
- Child Development Unit, The Children's Hospital at Westmead, Westmead, Australia
| | - Gail Tomsic
- Child Development Unit, The Children's Hospital at Westmead, Westmead, Australia
| | - Marcia Williamsz
- Child Development Unit, The Children's Hospital at Westmead, Westmead, Australia
| | - Natalie Silove
- Child Development Unit, The Children's Hospital at Westmead, Westmead, Australia
- Discipline of Speech Pathology, Faculty of Medicine and Health, Univeristy of Sydney, Sydney, Australia
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Stroupková L, Vyhnalová M, Kolář S, Knedlíková L, Packanová I, Bittnerová AM, Nováková N, Kučerová HP, Horák O, Ošlejšková H, Theiner P, Danhofer P. Use of Telehealth in Autism Spectrum Disorder Assessment in Children: Evaluation of an Online Diagnostic Protocol Including the Brief Observation of Symptoms of Autism. J Autism Dev Disord 2024:10.1007/s10803-024-06524-x. [PMID: 39325287 DOI: 10.1007/s10803-024-06524-x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 08/13/2024] [Indexed: 09/27/2024]
Abstract
The COVID-19 pandemic revealed the need to develop the field of remote assessment for autism spectrum disorders (ASD). The purpose of the study was to evaluate an online assessment protocol that includes the Brief Observation of Symptoms of Autism (BOSA). The online protocol consisting of BOSA and the Autism Diagnostic Interview-Revised (ADI-R) was administered by experienced examiners to 29 children with suspected ASD. The participants were then evaluated by clinical psychologists in a standard clinical setting using the Autism Diagnostic Observation Schedule-2 (ADOS-2) and other methods, and the ASD diagnosis was confirmed or ruled out. The results show substantial to moderate inter-rater agreement between the online and face-to-face raters with the value of Cohen's Kappa = 0.66 (P < 0.001); this corresponds with 79.8% agreement. The sensitivity of the protocol was approx. 94.7%, the specificity was 70%, the positive predictive value was 85.7%, and the negative predictive value was 87.5%. Further, direct false positive or false negative diagnostic conclusions based on the online protocol were absent when the possible conclusion of "I cannot decide" was included. The items B9 Showing, B10 Spontaneous Initiation of Joint Attention, B1 Unusual Eye Contact, B3 Facial Expressions Directed to Others, and C2 Imagination/Creativity were shown to be well observable in BOSA when related to ADOS-2 scoring. The results indicate that the protocol consisting of BOSA and ADI-R administered by an experienced examiner is a promising combination of tools for remote autism assessment.
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Affiliation(s)
- Lucie Stroupková
- Department of Pediatric Neurology, Faculty of Medicine, Masaryk University and University Hospital Brno, Brno, Czech Republic.
- Department of Psychology, Faculty of Arts of Masaryk University, Brno, Czech Republic.
| | - Martina Vyhnalová
- Department of Pediatric Neurology, Faculty of Medicine, Masaryk University and University Hospital Brno, Brno, Czech Republic
- Department of Psychology, Faculty of Arts of Masaryk University, Brno, Czech Republic
| | - Senad Kolář
- Department of Pediatric Neurology, Faculty of Medicine, Masaryk University and University Hospital Brno, Brno, Czech Republic
| | - Lenka Knedlíková
- Department of Pediatric Neurology, Faculty of Medicine, Masaryk University and University Hospital Brno, Brno, Czech Republic
| | - Ivona Packanová
- Department of Pediatric Neurology, Faculty of Medicine, Masaryk University and University Hospital Brno, Brno, Czech Republic
| | - Anna Marie Bittnerová
- Department of Pediatric Neurology, Faculty of Medicine, Masaryk University and University Hospital Brno, Brno, Czech Republic
| | - Nela Nováková
- Department of Pediatric Neurology, Faculty of Medicine, Masaryk University and University Hospital Brno, Brno, Czech Republic
| | | | - Ondřej Horák
- Department of Pediatric Neurology, Faculty of Medicine, Masaryk University and University Hospital Brno, Brno, Czech Republic
| | - Hana Ošlejšková
- Department of Pediatric Neurology, Faculty of Medicine, Masaryk University and University Hospital Brno, Brno, Czech Republic
| | - Pavel Theiner
- Department of Pediatric Neurology, Faculty of Medicine, Masaryk University and University Hospital Brno, Brno, Czech Republic
| | - Pavlína Danhofer
- Department of Psychiatry, Faculty of Medicine, Masaryk University and University Hospital Brno, Brno, Czech Republic
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Chu JTW, Wilson H, Cai CZ, McCormack JC, Newcombe D, Bullen C. Technologies for Supporting Individuals and Caregivers Living With Fetal Alcohol Spectrum Disorder: Scoping Review. JMIR Ment Health 2024; 11:e51074. [PMID: 38994826 PMCID: PMC11259581 DOI: 10.2196/51074] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/20/2023] [Revised: 04/14/2024] [Accepted: 04/15/2024] [Indexed: 07/13/2024] Open
Abstract
Background Fetal alcohol spectrum disorder (FASD) is a common developmental disability that requires lifelong and ongoing support but is often difficult to find due to the lack of trained professionals, funding, and support available. Technology could provide cost-effective, accessible, and effective support to those living with FASD and their caregivers. Objective In this review, we aimed to explore the use of technology available for supporting people living with FASD and their caregivers. Methods We conducted a scoping review to identify studies that included technology for people with FASD or their caregivers; focused on FASD; used an empirical study design; were published since 2005; and used technology for assessment, diagnosis, monitoring, or support for people with FASD. We searched MEDLINE, Web of Science, Scopus, Embase, APA PsycINFO, ACM Digital Library, JMIR Publications journals, the Cochrane Library, EBSCOhost, IEEE, study references, and gray literature to find studies. Searches were conducted in November 2022 and updated in January 2024. Two reviewers (CZC and HW) independently completed study selection and data extraction. Results In total, 17 studies exploring technology available for people with FASD showed that technology could be effective at teaching skills, supporting caregivers, and helping people with FASD develop skills. Conclusions Technology could provide support for people affected by FASD; however, currently there is limited technology available, and the potential benefits are largely unexplored.
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Affiliation(s)
- Joanna Ting Wai Chu
- National Institute for Health Innovation, School of Population Health, The University of Auckland, Auckland, New Zealand
- Centre for Arts and Social Transformation, Faculty of Education and Social Work, The University of Auckland, Auckland, New Zealand
- Centres for Addiction Research, Medical and Health Sciences, The University of Auckland, Auckland, New Zealand
- Social and Community Health, School of Population Health, The University of Auckland, Auckland, New Zealand
| | - Holly Wilson
- National Institute for Health Innovation, School of Population Health, The University of Auckland, Auckland, New Zealand
- Social and Community Health, School of Population Health, The University of Auckland, Auckland, New Zealand
| | - Cynthia Zhiyin Cai
- National Institute for Health Innovation, School of Population Health, The University of Auckland, Auckland, New Zealand
- Social and Community Health, School of Population Health, The University of Auckland, Auckland, New Zealand
| | - Jessica C McCormack
- National Institute for Health Innovation, School of Population Health, The University of Auckland, Auckland, New Zealand
- Sensory Neuroscience Lab, Food Science, University of Otago, Dunedin, New Zealand
| | - David Newcombe
- Centres for Addiction Research, Medical and Health Sciences, The University of Auckland, Auckland, New Zealand
- Social and Community Health, School of Population Health, The University of Auckland, Auckland, New Zealand
| | - Chris Bullen
- National Institute for Health Innovation, School of Population Health, The University of Auckland, Auckland, New Zealand
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Schiano N, Sivori T, Dumont R, Weaver M, Shehadeh A, Ridgway E, Schaaf R. Ayres Sensory Integration® Intervention for Autistic Children: A Telehealth Adaptation. Am J Occup Ther 2024; 78:7804345010. [PMID: 38900915 PMCID: PMC11220782 DOI: 10.5014/ajot.2024.050612] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 06/22/2024] Open
Abstract
IMPORTANCE Ayres Sensory Integration® is an evidence-based, manualized occupational therapy intervention for autism that is delivered in person. A telehealth adaptation could bridge service gaps for families who may have challenges accessing services. OBJECTIVE To create a telehealth adaptation of the evidence-based manualized protocol of Ayres Sensory Integration using best practice for telehealth guidelines and to obtain input on the adaptation from experts. SETTING Online survey of U.S. telehealth experts and occupational therapy clinicians in fall and winter 2022. PARTICIPANTS Two telehealth experts and six occupational therapy clinicians. OUTCOMES AND MEASURES Two Qualtrics surveys focused on perceived feasibility and acceptability, resources included, and clarity of instructions. RESULTS Telehealth experts and occupational therapy clinicians rated the Ayres Sensory Integration telehealth adapted manual as easy to follow, aligned with telehealth best practices, and feasible for remote delivery. Suggestions for additional adaptations included adding resources for technology troubleshooting, intervention planning, rapport building, and continuing education. CONCLUSIONS AND RELEVANCE Suggested adaptations were made; the manual is ready for feasibility testing. Plain-Language Summary: This report is the first to describe a telehealth adaptation of Ayres Sensory Integration®. The manual provides comprehensive training and resources to support clinicians in delivering sensory integration, telehealth-based interventions to autistic children. Two telehealth experts and six occupational therapy clinicians rated the Ayres Sensory Integration telehealth adapted manual as easy to follow, aligned with telehealth best practices, and feasible for remote delivery. The manual will be available to clinicians after feasibility and pilot testing.
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Affiliation(s)
- Natalie Schiano
- Natalie Schiano, OTD, OTR/L, is Occupational Therapist, Children's Hospital of Philadelphia, Philadelphia, PA
| | - Taylor Sivori
- Taylor Sivori, OTD, OTR/L, is Research Project Manager II, College of Nursing and Health Professions, Drexel University, Philadelphia, PA
| | - Rachel Dumont
- Rachel Dumont, MS, OTR/L, is Research Program Manager, Center of Telehealth, Geisinger Clinic, Danville, PA
| | - Molly Weaver
- Molly Weaver, OTD, OTR/L, is Occupational Therapist, Easterseals of Southeastern Pennsylvania's Approved Private School, Philadelphia, PA
| | - Aseel Shehadeh
- Aseel Shehadeh, OTD, OTR/L, is Occupational Therapist, PT Solutions, Totowa, NJ
| | - Elizabeth Ridgway
- Elizabeth Ridgway, OTD, OTR/L, C/NDT, is Occupational Therapy Assistant Chief and Assistant Professor, Pediatrics, Rose F. Kennedy Children's Evaluation and Rehabilitation Center at Einstein/Montefiore, Bronx, NY
| | - Roseann Schaaf
- Roseann Schaaf, PhD, OTR/L, FAOTA, is Director, Jefferson Autism Center of Excellence, and Professor, Department of Occupational Therapy, Thomas Jefferson University, Philadelphia, PA;
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Stephenson KG, Vargo KC, Cacciato NM, Albright CM, Kryszak EM. Developmental Assessment in Children at Higher Likelihood for Developmental Delays - Comparison of Parent Report and Direct Assessment. J Autism Dev Disord 2024:10.1007/s10803-024-06420-4. [PMID: 38874836 DOI: 10.1007/s10803-024-06420-4] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 05/22/2024] [Indexed: 06/15/2024]
Abstract
PURPOSE Accurate assessment of cognitive development of young children is a vital component of developmental evaluations. Direct assessment of developmental skills is not always feasible, but there is limited information on the agreement between direct assessment and caregiver-reported cognitive skills. There is limited information regarding the accuracy of the parent-reported Developmental Profile 4 (DP-4) in comparison to the widely-used developmental measure, the Bayley Scales of Infant and Toddler Development, Fourth Edition (Bayley-4). The purpose of the current study was to evaluate whether a standardized parent interview can effectively identify children at risk for cognitive developmental delays. METHODS We compared the agreement between the Bayley-4 Cognitive and the Developmental Profile 4 (DP-4) in young children being evaluated in-person for early developmental delays. 182 children (134 with an autism diagnosis), ages 6-42 months, completed both assessments. RESULTS Results showed that Bayley-4 Cognitive scores had a moderately strong correlation with DP4-Cognitive scores (r = 0.70, p < 0.001). A cutoff of 70 or 69 on the DP-4 Cognitive was determined as ideal for identifying developmental delay based on diagnosis of global developmental delay or the Bayley-4 Cognitive. CONCLUSIONS Our analyses revealed good agreement between DP-4 and Bayley-4 Cognitive scores, even after controlling for confounding variables such as degree of ASD characteristics, age, and sex. These results suggest that caregiver-report measures can be a valid and useful tool in the assessment of young children, particularly when direct developmental assessment is not feasible.
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Affiliation(s)
- Kevin G Stephenson
- Child Development Center, Department of Pediatrics, Nationwide Children's Hospital, 700 Children's Dr, Columbus, OH, 43205, USA.
- Departments of Pediatrics and Psychology, The Ohio State University, Columbus, OH, USA.
| | - Kerrigan C Vargo
- Child Development Center, Department of Pediatrics, Nationwide Children's Hospital, 700 Children's Dr, Columbus, OH, 43205, USA
| | - Nicole M Cacciato
- Child Development Center, Department of Pediatrics, Nationwide Children's Hospital, 700 Children's Dr, Columbus, OH, 43205, USA
| | - Charles M Albright
- Child Development Center, Department of Pediatrics, Nationwide Children's Hospital, 700 Children's Dr, Columbus, OH, 43205, USA
- Departments of Pediatrics and Psychology, The Ohio State University, Columbus, OH, USA
| | - Elizabeth M Kryszak
- Child Development Center, Department of Pediatrics, Nationwide Children's Hospital, 700 Children's Dr, Columbus, OH, 43205, USA
- Departments of Pediatrics and Psychology, The Ohio State University, Columbus, OH, USA
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Riva V, Villa L, Fulceri F, Arduino GM, Leonti G, Valeri G, Casula L, Zoccante L, Puttini E, Sogos C, Presicce M, Bentenuto A, Apicella F, Molteni M, Scattoni ML. The teleNIDA: Early Screening of Autism Spectrum Disorder Through a Novel Telehealth Approach. J Autism Dev Disord 2024; 54:1680-1690. [PMID: 36814040 PMCID: PMC9946866 DOI: 10.1007/s10803-023-05927-6] [Citation(s) in RCA: 2] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 02/08/2023] [Indexed: 02/24/2023]
Abstract
The COVID-19 pandemic has fast-tracked interest in telehealth methods to guarantee the continuity of care of children with Autism Spectrum Disorder (ASD). Store-and-forward telehealth approaches offer the opportunity to facilitate timely screening of ASD, allowing parents to record videos of their child's behaviors, subsequently shared with clinicians that provide an assessment remotely. This study aimed to examine the psychometric properties of a new telehealth screening tool, the teleNIDA, administered in home settings for remote observation of early signs of ASD in toddlers aged 18-30 months. Results showed good psychometric properties of the teleNIDA, as compared to the gold standard in-person assessment, and the predictive validity on the diagnosis of ASD at 36 months was demonstrated. This study supports the teleNIDA as a promising level 2 screening tool for ASD able to speed up diagnostic and intervention processes.
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Affiliation(s)
- Valentina Riva
- Child Psychopathology Unit, Scientific Institute, IRCCS E. Medea, Bosisio Parini, Lecco, Italy
| | - Laura Villa
- Child Psychopathology Unit, Scientific Institute, IRCCS E. Medea, Bosisio Parini, Lecco, Italy
| | - Francesca Fulceri
- Research Coordination and Support Service, Istituto Superiore di Sanità, Viale Regina Elena 299, 00161, Rome, Italy
| | | | - Guido Leonti
- Centro Autismo e Sindrome di Asperger ASLCN1, 12084, Mondovì, Italy
| | - Giovanni Valeri
- Department of Neuroscience, Child Neuropsychiatric Unit, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy
| | - Laura Casula
- Department of Neuroscience, Child Neuropsychiatric Unit, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy
| | - Leonardo Zoccante
- Child and Adolescent Neuropsychiatry Unit, Maternal-Child Integrated Care Department, Integrated University Hospital of Verona, 37126, Verona, Italy
| | - Elena Puttini
- Child and Adolescent Neuropsychiatry Unit, Maternal-Child Integrated Care Department, Integrated University Hospital of Verona, 37126, Verona, Italy
| | - Carla Sogos
- Child Neuropsychiatry Unit, Department of Human Neuroscience, Sapienza University of Rome, Rome, Italy
| | - Mariaelena Presicce
- Child Neuropsychiatry Unit, Department of Human Neuroscience, Sapienza University of Rome, Rome, Italy
| | - Arianna Bentenuto
- Laboratory of Observation, Diagnosis and Education (ODFLab), Department of Psychology and Cognitive Science, University of Trento, 38122, Trento, Italy
| | - Fabio Apicella
- Department of Developmental Neuroscience, IRCCS Stella Maris Foundation, Pisa, Italy
| | - Massimo Molteni
- Child Psychopathology Unit, Scientific Institute, IRCCS E. Medea, Bosisio Parini, Lecco, Italy
| | - Maria Luisa Scattoni
- Research Coordination and Support Service, Istituto Superiore di Sanità, Viale Regina Elena 299, 00161, Rome, Italy.
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10
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Tsai JM, Bhat AN. Demographic differences in access to health/therapeutic services over first year of the pandemic: a SPARK COVID-19 impact survey analysis. FRONTIERS IN HEALTH SERVICES 2024; 4:1343636. [PMID: 38745995 PMCID: PMC11091302 DOI: 10.3389/frhs.2024.1343636] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 11/29/2023] [Accepted: 04/09/2024] [Indexed: 05/16/2024]
Abstract
Introduction This analysis examined changes in services received and service recovery one-year post-pandemic compared to pre-pandemic levels in children with ASD aged between 19 months and 17 years in various subgroups based on factors such as age, income, race/ethnicity, geographic location, and sex. Methods An online, parent report survey was completed by the parents of children with ASD in the SPARK study cohort (N = 6,393). Descriptive statistics, chi-square analyses, and Spearman correlations were performed to study associations between various factors and service access, pre-pandemic and one-year, post-pandemic. Results One year after pandemic, the lag in service recovery in children with ASD was greatest for PT/OT services followed by SLT. ABA services only recovered in half of the subgroups. In contrast, SES fully recovered and MH and MED services superseded pre-pandemic levels. Across majority of the timepoints, younger children received more SLT, PT/OT, and ABA services whereas older children received more SES, MH, and MED services. Higher income families accessed more SES, SLT, and ABA whereas lower income families received more MH services. White families received less SLT compared to non-white families. Hispanic families received more SLT services compared to non-Hispanic families. Compared to rural families, urban families received more ABA services at baseline which also recovered one year after the pandemic. Certain counterintuitive findings may be attributed to home/remote schooling leading to reduced access to related services. Conclusions Future research and policy changes are needed to address the American healthcare vulnerabilities when serving children with ASD by enhancing the diversity of healthcare formats for continued service access during future pandemics and other similar crises.
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Affiliation(s)
- J.-M. Tsai
- Department of Physical Therapy, University of Delaware, Newark, DE, United States
- Interdisciplinary Neuroscience Graduate Program, University of Delaware, Newark, DE, United States
| | - A. N. Bhat
- Department of Physical Therapy, University of Delaware, Newark, DE, United States
- Interdisciplinary Neuroscience Graduate Program, University of Delaware, Newark, DE, United States
- Biomechanics & Movement Science Program, University of Delaware, Newark, DE, United States
- Department of Psychological & Brain Sciences, University of Delaware, Newark, DE, United States
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Tebar-Yébana S, Navarro-Mateu D, Gómez-Domínguez MT, Gómez-Dominguez V. Educational inclusion and satisfaction of families of students with intellectual disabilities: a bibliometric study. Front Psychol 2024; 15:1335168. [PMID: 38586293 PMCID: PMC10995399 DOI: 10.3389/fpsyg.2024.1335168] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/08/2023] [Accepted: 03/11/2024] [Indexed: 04/09/2024] Open
Abstract
This bibliometric study scrutinizes the corpus of scientific output within the Web of Science pertaining to familial satisfaction among parents raising children with intellectual disabilities, focusing specifically on the milieu of educational inclusion. The analysis discerns a discernible ascension in scholarly interest in this domain, encapsulating 77 papers emanating from 75 journals, incorporating an aggregate of 3,497 cited references. Our investigation delineated 354 researchers across 39 nations, underscoring the transnational purview of this scholarly endeavor. The United States emerged as the pre-eminent contributor, with Canada and the United Kingdom following suit. Collaboration on an international scale was notably led by the US, with the UK and Australia trailing in tandem. Prominent institutions were identified for their scholarly output; the University of Kansas led with four papers, followed closely by Monash University, University of California Los Angeles, and University of California Riverside, each contributing three papers. Of particular note, the University of Kansas accrued 250 global citations (TGCS). A total of 75 journals were encompassed in this study. The Journal of Intellectual Disability Research emerged as the vanguard with four published papers, closely trailed by Child Care Health and Development and Exceptional Children. Notably, the latter boasted the highest impact factor (JCR = 4.09; Q1). In summation, this review proffers a meticulous and expansive overview of extant scholarship concerning the experiences of families rearing children with disabilities within the inclusive education framework.
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Affiliation(s)
- Susana Tebar-Yébana
- Doctoral School, Catholic University of Valencia San Vicente Mártir, Valencia, Spain
- Department of Specific Educational Needs and Attention to Diversity, Faculty of Education Sciences, Catholic University of Valencia San Vicente Mártir, Valencia, Spain
| | - Diego Navarro-Mateu
- Department of Specific Educational Needs and Attention to Diversity, Faculty of Education Sciences, Catholic University of Valencia San Vicente Mártir, Valencia, Spain
| | - María Teresa Gómez-Domínguez
- Department of Specific Educational Needs and Attention to Diversity, Faculty of Education Sciences, Catholic University of Valencia San Vicente Mártir, Valencia, Spain
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Ludwig NN, Holingue C, Hong JS, Kalb LG, Pfeiffer D, Reetzke R, Menon D, Landa R. Diagnostic certainty during in-person and telehealth autism evaluations. JCPP ADVANCES 2024; 4:e12201. [PMID: 38486947 PMCID: PMC10933595 DOI: 10.1002/jcv2.12201] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/15/2022] [Accepted: 08/24/2023] [Indexed: 03/17/2024] Open
Abstract
Background Many diagnostic evaluations abruptly shifted to telehealth during the COVID-19 pandemic; however, little is known about the impact on diagnosis patterns for children evaluated for autism spectrum disorder (ASD). The purpose of this clinical research study was to examine (1) the frequency of diagnoses evaluated beyond ASD; (2) the frequency of diagnoses made, including ASD; and (3) clinician diagnostic certainty for all diagnoses evaluated for children who received an evaluation due to primary concerns about ASD via telehealth during the pandemic compared to those evaluated in person before the pandemic at an ASD specialty clinic. Methods The sample included 2192 children, 1-17 years (M = 6.5 years; SD = 3.9), evaluated by a physician/psychologist at an ASD specialty center. A total of 649 children were evaluated in-person September 1, 2019-March 13, 2020 (pre-pandemic) and 1543 were evaluated via telehealth March 14, 2020-July 26, 2021 (during pandemic). Upon completion of each evaluation, clinicians provided a final diagnostic determination (i.e., "Yes," "No," "Possible," or "Not Assessed") for the following DSM-5 conditions: ASD, attention-deficit/hyperactivity disorder (ADHD), intellectual developmental disorder (IDD), anxiety (ANX), depression (DEP), and behavioral disorder (BD). "Possible" indicated lower certainty and the diagnosis was not provided. "Not Assessed" indicated the disorder was not evaluated. Results Diagnostic certainty for ASD and ADHD was lower and clinicians evaluated for and made diagnoses of IDD less often during evaluations that occurred via telehealth during the pandemic versus in person before the pandemic. DEP and BD were diagnosed more frequently, diagnostic certainty of DEP was lower, and no differences in the frequency of ANX diagnoses emerged during evaluations conducted via telehealth during the pandemic compared to those conducted in person before the pandemic. Conclusions Differences emerged in the frequency of diagnoses evaluated and made and diagnostic certainty for evaluations conducted via telehealth during the pandemic compared to in person before the pandemic, which likely impacted patients and reflect real-word challenges. Future work should examine whether these patterns are generalizable and the mechanisms that contribute to these differences.
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Affiliation(s)
- Natasha N. Ludwig
- Department of NeuropsychologyKennedy Krieger InstituteBaltimoreMarylandUSA
- Department of Psychiatry and Behavioral SciencesJohns Hopkins School of MedicineBaltimoreMarylandUSA
| | - Calliope Holingue
- Center for Autism and Related DisordersKennedy Krieger InstituteBaltimoreMarylandUSA
- Department of Mental HealthJohns Hopkins Bloomberg School of Public HealthBaltimoreMarylandUSA
| | - Ji Su Hong
- Department of Psychiatry and Behavioral SciencesJohns Hopkins School of MedicineBaltimoreMarylandUSA
- Center for Autism and Related DisordersKennedy Krieger InstituteBaltimoreMarylandUSA
| | - Luther G. Kalb
- Department of NeuropsychologyKennedy Krieger InstituteBaltimoreMarylandUSA
- Center for Autism and Related DisordersKennedy Krieger InstituteBaltimoreMarylandUSA
- Department of Mental HealthJohns Hopkins Bloomberg School of Public HealthBaltimoreMarylandUSA
| | - Danika Pfeiffer
- Department of Psychiatry and Behavioral SciencesJohns Hopkins School of MedicineBaltimoreMarylandUSA
- Center for Autism and Related DisordersKennedy Krieger InstituteBaltimoreMarylandUSA
| | - Rachel Reetzke
- Department of Psychiatry and Behavioral SciencesJohns Hopkins School of MedicineBaltimoreMarylandUSA
- Center for Autism and Related DisordersKennedy Krieger InstituteBaltimoreMarylandUSA
| | - Deepa Menon
- Center for Autism and Related DisordersKennedy Krieger InstituteBaltimoreMarylandUSA
- Department of NeurologyJohns Hopkins School of MedicineBaltimoreMarylandUnited States
| | - Rebecca Landa
- Department of Psychiatry and Behavioral SciencesJohns Hopkins School of MedicineBaltimoreMarylandUSA
- Center for Autism and Related DisordersKennedy Krieger InstituteBaltimoreMarylandUSA
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13
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Shura RD, Sapp A, Ingram PB, Brearly TW. Evaluation of telehealth administration of MMPI symptom validity scales. J Clin Exp Neuropsychol 2024; 46:86-94. [PMID: 38375629 DOI: 10.1080/13803395.2024.2314734] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/06/2023] [Accepted: 01/11/2024] [Indexed: 02/21/2024]
Abstract
INTRODUCTION Telehealth assessment (TA) is a quickly emerging practice, offered with increasing frequency across many different clinical contexts. TA is also well-received by most patients, and there are numerous guidelines and training opportunities which can support effective telehealth practice. Although there are extensive recommended practices, these guidelines have rarely been evaluated empirically, particularly on personality measures. While existing research is limited, it does generally support the idea that TA and in-person assessment (IA) produce fairly equitable test scores. The MMPI-3, a recently released and highly popular personality and psychopathology measure has been the subject of several of those experimental or student (non-client) based studies; however, no study to date has evaluated these trends within a clinical sample. This study empirically tests for differences in TA and IA test scores on the MMPI-3 validity scores when following recommended administration procedures. METHOD Data were from a retrospective chart review. Veterans (n = 550) who underwent psychological assessment in a Veterans Affairs Medical Center ADHD evaluation clinic were contrasted between in person and telehealth assessment modalities on the MMPI-2-RF and MMPI-3. Groups were compared using t tests, chi square, and base rates. RESULTS Results suggest that there were minimal differences in elevation rates or mean scores across modality, supporting the use of TA. CONCLUSIONS This study's findings support the use of the MMPI via TA with ADHD evaluations, Veterans, and in neuro/psychological evaluation settings more generally. Observed elevation rates and mean scores of this study were notably different from those seen in other VA service clinics sampled nationally, which is an area of future investigation.
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Affiliation(s)
- Robert D Shura
- Research & Academic Affairs Service Line, Salisbury VA Healthcare System, Salisbury, NC, USA
- Neurocognition Research Lab, VA Mid-Atlantic Mental Illness Research, Education, and Clinical Center, Durham, NC, USA
- Department of Neurology, Wake Forest School of Medicine, Winston-Salem, NC, USA
| | - Alison Sapp
- Department of Psychological Sciences, Texas Tech University, Lubbock, TX, USA
| | - Paul B Ingram
- Department of Psychological Sciences, Texas Tech University, Lubbock, TX, USA
- Department of Veterans Affairs Eastern Kansas Healthcare, Leavenworth VAMC, Leavenworth, KS, USA
| | - Timothy W Brearly
- Department of Neurology, Penn State Milton S. Hershey Medical Center, Hershey, PA, USA
- Penn State College of Medicine, Department of Neurology, Hershey, PA, USA
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14
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Dai Y, Deng T, Chen M, Huang B, Ji Y, Feng Y, Liu S, Zhong D, Zhang T, Zhang L. Improving early detection, diagnosis and intervention for children with autism spectrum disorder: A cross-sectional survey in China. RESEARCH IN DEVELOPMENTAL DISABILITIES 2023; 142:104616. [PMID: 37820392 DOI: 10.1016/j.ridd.2023.104616] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 08/19/2022] [Revised: 08/01/2023] [Accepted: 10/02/2023] [Indexed: 10/13/2023]
Abstract
BACKGROUND Detection and diagnosis of autism spectrum disorder (ASD) are prerequisites for early interventions. However, few studies focused on this topic. AIM This study aims to characterize the timing from symptom detection to intervention in children with ASD and identify predictors of age at ASD diagnosis, presence of intervention, and the time lag between detection and diagnosis. METHODS AND PROCEDURES A cross-sectional survey was conducted with 303 parents (111 fathers and 192 mothers, 21-54 years) of children with ASD in Guangzhou, China. OUTCOMES AND RESULTS The median time from symptom observation to the first doctor visit was 3 months, while the time to ASD diagnosis averaged 6 months. Most children (76.24 %) were diagnosed within one year after detection, and 25.58 % had no intervention after diagnosis. Predictors of earlier ASD diagnosis included ASD-related symptoms identified at an older age, less serious symptoms, and initial symptoms with atypical motor development and sensory anomalies. ASD-related symptoms observed at an older age, initial symptoms with social deficits, sensory anomalies, and without language impairment, primary caregivers other than parents, families with lower income, and less social support utilization increased the odds of a time lag between detection and diagnosis. Children with fathers having lower education were less likely to receive interventions. CONCLUSIONS AND IMPLICATIONS Earlier ASD identification and intervention might be facilitated by health education on typical symptoms of ASD for parents with young children and incorporating ASD screening during routine health examinations for children. For children whose primary caregivers are not their parents and from lower-income families, additional support may be required for timely diagnosis after reporting ASD-related symptoms. Moreover, more intervention supports are expected for children whose fathers have lower education levels. Helping families take full advantage of support is also important for early diagnosis and intervention.
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Affiliation(s)
- Yushen Dai
- School of Nursing, Sun Yat-sen University, Guangzhou, China
| | - Tao Deng
- School of Nursing, Sun Yat-sen University, Guangzhou, China
| | - Miaoying Chen
- Child Development and Behavior Center, The Third Affiliated Hospital of Sun Yat-Sen University Lingnan Hospital, Guangzhou, China
| | - Baoqin Huang
- Child Development and Behavior Center, The Third Affiliated Hospital of Sun Yat-Sen University Lingnan Hospital, Guangzhou, China
| | - Yan Ji
- Child Development and Behavior Center, The Third Affiliated Hospital of Sun Yat-Sen University Lingnan Hospital, Guangzhou, China
| | - Yongshen Feng
- School of Nursing, Sun Yat-sen University, Guangzhou, China
| | - Shaofei Liu
- School of Nursing, Sun Yat-sen University, Guangzhou, China
| | - Dongmei Zhong
- School of Nursing, Sun Yat-sen University, Guangzhou, China
| | - Tao Zhang
- Faculty of Humanities and Social Sciences, Macao Polytechnic University, Macao, China
| | - Lifeng Zhang
- School of Nursing, Sun Yat-sen University, Guangzhou, China.
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15
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Khairetdinov OZ, Rubakova LI. Equivalence of the autism spectrum disorders diagnostics in children in telemedicine and face-to-face consultations: a literature review. CONSORTIUM PSYCHIATRICUM 2023; 4:55-64. [PMID: 38249532 PMCID: PMC10795948 DOI: 10.17816/cp12496] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/07/2023] [Accepted: 08/31/2023] [Indexed: 01/23/2024] Open
Abstract
BACKGROUND The use of remote forms of mental health care has become widespread during the period of epidemiological restrictions due to the COVID-19 pandemic. Methodological and organizational issues remain insufficiently developed, including the level of equivalence of the use of telemedicine technologies in the diagnosis of autistic spectrum disorders. AIM Study of the equivalence of diagnostic tools in the framework of telemedicine and face-to-face consultations in children with autistic spectrum disorders according to modern scientific literature. METHODS A descriptive review of scientific studies published between January 2017 and May 2023 was carried out. The papers presented in the electronic databases PubMed, Web of Science, and eLibrary were analyzed. Descriptive analysis was used to summarize the obtained data. RESULTS The conducted analysis convincingly indicates sufficient equivalence of remote tools used in different countries for level I screening, assessment scales, and structured procedures for diagnosing autistic spectrum disorders with a high level of specificity from 60.0 to 94.4%, sensitivity from 75 dog 98.4%, and satisfaction of patients and their legal representatives. CONCLUSION The widespread use of validated telemedicine diagnostic systems in clinical practice contributes to the early detection of autistic spectrum disorders, increasing the timeliness and effectiveness of medical, corrective psychological, pedagogical, and habilitation interventions.
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Affiliation(s)
- Oleg Z. Khairetdinov
- Scientific and Practical Center for Mental Health of Children and Adolescents named after G.E. Sukhareva
| | - Luciena I. Rubakova
- Scientific and Practical Center for Mental Health of Children and Adolescents named after G.E. Sukhareva
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16
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Micheletti M, Brukilacchio BH, Hooper-Boyle H, Basiru T, Brinster MI, Ravenscroft S, Shahidullah JD. Evaluating the Efficiency and Equity of Autism Diagnoses via Telehealth During COVID-19. J Autism Dev Disord 2023:10.1007/s10803-023-05986-9. [PMID: 37074489 PMCID: PMC10115372 DOI: 10.1007/s10803-023-05986-9] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 04/04/2023] [Indexed: 04/20/2023]
Abstract
Given existing barriers to a timely autism diagnosis, this study compares the efficiency and equity of diagnoses conducted in-person vs. telehealth in a developmental behavioral pediatrics setting. The transition to telehealth was prompted by the COVID-19 pandemic. Eleven months of clinic data in electronic medical records were retrospectively analyzed for children diagnosed with autism in-person (N = 71) vs. telehealth (N = 45). Time to autism diagnosis, patient demographics, and deferred diagnoses did not significantly differ across visit types. However, privately insured patients and families living farther from the clinic had a longer time to diagnosis via telehealth vs. in-person. Results of this exploratory study highlight the feasibility of telehealth evaluations for autism and which families may benefit from additional support to ensure a timely diagnosis.
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Affiliation(s)
- Megan Micheletti
- Department of Psychology, The University of Texas at Austin, 108 E Dean Keeton St, Austin, TX, 78712, USA
| | - Briana H Brukilacchio
- Lurie Center for Autism, Massachusetts General Hospital, Harvard Medical School, 1 Maguire Road, Lexington, MA, 02421, USA
| | - Haley Hooper-Boyle
- Dell Children's Medical Center, 4900 Mueller Blvd, Austin, TX, 78723, USA
| | - Tajudeen Basiru
- Dell Children's Medical Center, 4900 Mueller Blvd, Austin, TX, 78723, USA
| | - Meredith I Brinster
- Department of Psychiatry and Behavioral Sciences, Dell Medical School, The University of Texas at Austin, Health Discovery Building, 1601 Trinity St., Bldg B, Z0600, Austin, TX, 78712, USA
| | - Sheri Ravenscroft
- Department of Pediatrics, Dell Medical School, The University of Texas at Austin, 1400 Barbara Jordan Blvd, Austin, TX, 78723, USA
| | - Jeffrey D Shahidullah
- Department of Psychiatry and Behavioral Sciences, Dell Medical School, The University of Texas at Austin, Health Discovery Building, 1601 Trinity St., Bldg B, Z0600, Austin, TX, 78712, USA.
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17
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Blackmore CE, Nolan A, Stoencheva V, Greenwood N, Liu-Thwaites N, Maltezos S, McAlonan GM. Comparison of an online adaptation of the Autism Diagnostic Observation Schedule-2 with its in-person version in an adult autism diagnostic service. BJPsych Open 2023; 9:e51. [PMID: 36876642 PMCID: PMC10044163 DOI: 10.1192/bjo.2023.24] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 03/07/2023] Open
Abstract
BACKGROUND Restrictions on in-person assessments during the COVID-19 pandemic were a challenge for an adult autism diagnostic service receiving over 600 referrals annually. The service sought to adapt the Autism Diagnostic Observation Schedule (ADOS-2) for online administration. AIMS To investigate whether an online adaptation of the ADOS-2 performed comparably to the in-person ADOS-2. To obtain qualitative feedback from patients and clinicians regarding experiences of the online alternative. METHOD Online ADOS-2 assessments were completed for 163 referred individuals. A matched-comparison group comprised 198 individuals seen for an in-person ADOS-2 assessment prior to COVID-19 restrictions. A two-way analysis of variance (ANOVA) was run to explore any effect of assessment type (online or in-person ADOS-2) and gender on total ADOS score. Qualitative feedback was collected from 46 patients and 8 clinicians involved in diagnostic decision-making after the online ADOS-2 assessment. RESULTS A two-way ANOVA found no significant effect of assessment type or gender and no assessment type × gender interaction effect on total ADOS score. Qualitative feedback suggested that only 27% of patients would have preferred an in-person assessment. Nearly all clinicians reported gains from offering an online alternative. CONCLUSIONS This is the first study to examine an online adaptation of ADOS-2 within an adult autism diagnostic service. It performed comparably to the in-person ADOS-2, making it a viable alternative when in-person assessments are not possible. As this clinic group has high rates of comorbid mental health difficulties, we encourage further work to determine whether online assessment approaches generalise to other services to increase options for patients and efficiencies for service delivery.
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Affiliation(s)
- Charlotte E Blackmore
- Department of Forensic and Neurodevelopmental Sciences, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, UK; and Adult ADHD and Autism Service, Croydon Adult and Behavioural & Developmental Psychiatry Directorate, South London and Maudsley NHS Foundation Trust, London, UK
| | - Alexandra Nolan
- Adult ADHD and Autism Service, Croydon Adult and Behavioural & Developmental Psychiatry Directorate, South London and Maudsley NHS Foundation Trust, London, UK
| | - Vladimira Stoencheva
- Adult ADHD and Autism Service, Croydon Adult and Behavioural & Developmental Psychiatry Directorate, South London and Maudsley NHS Foundation Trust, London, UK
| | - Natalie Greenwood
- Adult ADHD and Autism Service, Croydon Adult and Behavioural & Developmental Psychiatry Directorate, South London and Maudsley NHS Foundation Trust, London, UK
| | - Natasha Liu-Thwaites
- Adult ADHD and Autism Service, Croydon Adult and Behavioural & Developmental Psychiatry Directorate, South London and Maudsley NHS Foundation Trust, London, UK
| | - Stefanos Maltezos
- Adult ADHD and Autism Service, Croydon Adult and Behavioural & Developmental Psychiatry Directorate, South London and Maudsley NHS Foundation Trust, London, UK
| | - Grainne M McAlonan
- Department of Forensic and Neurodevelopmental Sciences, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, UK; and Adult ADHD and Autism Service, Croydon Adult and Behavioural & Developmental Psychiatry Directorate, South London and Maudsley NHS Foundation Trust, London, UK
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18
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Enneking B, Ryan T, Tang Q, James C, Rouse M, Curtin M, Keehn RM. Acceptability and Access Metrics for Telehealth Consultation of Pediatric Neurodevelopmental Disabilities During COVID-19. J Pediatr Health Care 2023; 37:200-207. [PMID: 36175312 DOI: 10.1016/j.pedhc.2022.08.008] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/26/2022] [Accepted: 08/22/2022] [Indexed: 11/17/2022]
Abstract
INTRODUCTION We report caregiver agreement to attend telehealth neurodevelopmental consultation during COVID-19, demographic differences in agreement, reasons families declined, and clinical access metrics before and during COVID-19. METHOD Data were gathered from telehealth referrals and consultations from April to July 2020. Schedulers documented agreement status and reasons for the decline. Wait time, lag time, and missed appointment rates were calculated to measure access. RESULTS Ninety-one percent agreed to attend telehealth consultation; 55% of those who declined preferred in-person services. There were no demographic differences between those who accepted, declined, or did not respond. The median wait time from referral to appointment was 60 days. Missed appointment rates were consistent with prepandemic rates. DISCUSSION Findings support literature suggesting patients are agreeable to telehealth. They diverged from evidence suggesting telehealth reduces missed appointments. Overall, results indicate telehealth is an acceptable alternative; however, further telehealth innovation is needed to address existing disparities.
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Ali D, O'Brien S, Hull L, Kenny L, Mandy W. 'The key to this is not so much the technology. It's the individual who is using the technology': Perspectives on telehealth delivery for autistic adults during the COVID-19 pandemic. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2023; 27:552-564. [PMID: 35791666 PMCID: PMC10076158 DOI: 10.1177/13623613221108010] [Citation(s) in RCA: 7] [Impact Index Per Article: 3.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 02/02/2023]
Abstract
LAY ABSTRACT The COVID-19 pandemic meant that a lot of healthcare services had to move online, such as to video-calls, or to telephone. However, not many studies have looked at how autistic adults feel about this kind of service delivery. It is important to know this, as autistic people may have poorer health than non-autistic people, and they may also struggle to access services more than non-autistic people. This study asked 11 autistic adults (aged 27-67 years), seven family members/carers (aged 44-75) reporting about autistic adults and six service providers about their experiences of accessing or providing a telehealth service. These experiences were collected through interviews, which were then analysed through thematic analysis. Two main themes were: technology aids communication and access - except when it doesn't, and in/flexibility. The themes pointed out some positive aspects of telehealth delivery, including improved communication and decreased stress. The themes also pointed out negative aspects of telehealth, such as increased rigidity of the healthcare system, amplifying pre-existing barriers. Because autistic people have many barriers to accessing healthcare, this study encourages researchers and healthcare providers to think about how such barriers could be addressed through telehealth, and about the possible limitations of telehealth for some autistic people.
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Affiliation(s)
- Dorota Ali
- Autistica, London, UK.,King's College London, UK
| | | | - Laura Hull
- University of Bristol, UK.,University College London, UK
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20
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Kraft C, Chamanadjian C, Aylward BS. Autism Spectrum Disorder: The New Asthma? Clin Pediatr (Phila) 2022:99228221144146. [PMID: 36539943 DOI: 10.1177/00099228221144146] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/24/2022]
Abstract
While autism spectrum disorder (ASD) has traditionally been diagnosed in specialty care, rising prevalence rates have strained specialist capacity and created significant diagnostic bottlenecks. With long wait times for specialist evaluations, pediatricians are increasingly being asked to play a greater role in identifying, diagnosing, and managing ASD within the medical home. In this commentary we draw parallels between the challenges pediatricians faced two decades ago learning how to manage pediatric asthma in the medical home, to those faced today in the field of primary care ASD management. Reflecting on the lessons learnt in primary care asthma management may help us construct a roadmap towards a higher and more consistent standard of ASD primary care for patients and their families.
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Affiliation(s)
- Colleen Kraft
- University of Southern California, Los Angeles, CA, USA.,Cognoa, Inc., Palo Alto, CA, USA
| | | | - Brandon S Aylward
- Cognoa, Inc., Palo Alto, CA, USA.,RTI Health Advance, Research Triangle Park, NC, USA
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21
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McNally Keehn R, Enneking B, Ryan T, James C, Tang Q, Blewitt A, Tomlin A, Corona L, Wagner L. Tele-assessment of young children referred for autism spectrum disorder evaluation during COVID-19: Associations among clinical characteristics and diagnostic outcome. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2022:13623613221138642. [PMID: 36527227 PMCID: PMC9760512 DOI: 10.1177/13623613221138642] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/23/2022]
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.
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Affiliation(s)
- Rebecca McNally Keehn
- Indiana University School of Medicine,
USA,Rebecca McNally Keehn, Department of
Pediatrics, Indiana University School of Medicine, 410 West 10th Street, Room
2027, Indianapolis, IN 46202, USA.
| | | | | | | | - Qing Tang
- Indiana University School of Medicine,
USA
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22
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Reisinger DL, Hines E, Raches C, Tang Q, James C, Keehn RM. Provider and Caregiver Satisfaction with Telehealth Evaluation of Autism Spectrum Disorder in Young Children During the COVID-19 Pandemic. J Autism Dev Disord 2022; 52:5099-5113. [PMID: 35579789 PMCID: PMC9112250 DOI: 10.1007/s10803-022-05576-1] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 04/13/2022] [Indexed: 11/30/2022]
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.
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Affiliation(s)
- Debra L Reisinger
- Department of Pediatrics, Indiana University School of Medicine, 1002 Wishard Blvd, Suite 3120, 46202, Indianapolis, IN, United States.
| | - Elesia Hines
- Department of Pediatrics, Indiana University School of Medicine, 1002 Wishard Blvd, Suite 3120, 46202, Indianapolis, IN, United States
| | - Christine Raches
- Department of Pediatrics, Indiana University School of Medicine, 1002 Wishard Blvd, Suite 3120, 46202, Indianapolis, IN, United States
| | - Qing Tang
- Department of Biostatistics, Indiana University School of Medicine, Indianapolis, Indiana, United States
| | - Cristina James
- Department of Pediatrics, Indiana University School of Medicine, 1002 Wishard Blvd, Suite 3120, 46202, Indianapolis, IN, United States
| | - Rebecca McNally Keehn
- Department of Pediatrics, Indiana University School of Medicine, 1002 Wishard Blvd, Suite 3120, 46202, Indianapolis, IN, United States
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Phelps RA, Sample E, Greene RK, Duvall SW. Identifying Patient Characteristics to Understand Which Children May Receive Diagnostic Clarity in a Virtual Autism Spectrum Disorder Evaluation. J Autism Dev Disord 2022; 52:5126-5138. [PMID: 35064874 PMCID: PMC8783571 DOI: 10.1007/s10803-022-05434-0] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 01/05/2022] [Indexed: 11/27/2022]
Abstract
Given long waitlists for autism spectrum disorder (ASD) evaluation coupled with the COVID-19 pandemic, it is crucial to triage patients to services they are likely to receive diagnostic clarity (i.e., virtual, in-person evaluation). Participants attended a virtual ASD assessment. A subset also attended in-person evaluation. Results suggest younger children with educational services for ASD may benefit from virtual assessment while older patients with a history of psychiatric conditions may benefit from in-person evaluation. An ASD symptom severity tool related to virtual and in-person diagnostic clarity. Family history of ASD related to in-person diagnosis while other variables (e.g., age, educational services) did not. The study suggests patient characteristics may be used to determine for whom virtual ASD assessment may be appropriate.
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Affiliation(s)
- Randi A Phelps
- Division of Pediatric Psychology, Department of Pediatrics, Institute On Development and Disability, Oregon Health & Science University and Doernbecher Children's Hospital, Portland, OR, USA.
| | - Erika Sample
- School of Graduate Psychology, Pacific University, Hillsboro, OR, USA
| | - Rachel K Greene
- Division of Pediatric Psychology, Department of Pediatrics, Institute On Development and Disability, Oregon Health & Science University and Doernbecher Children's Hospital, Portland, OR, USA
| | - Susanne W Duvall
- Division of Pediatric Psychology, Department of Pediatrics, Institute On Development and Disability, Oregon Health & Science University and Doernbecher Children's Hospital, Portland, OR, USA
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24
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Holtman SJ, Winans KS, Hoch JD. Utility of Diagnostic Classification for Children 0-5 to Assess Features of Autism: Comparing In-person and COVID-19 Telehealth Evaluations. J Autism Dev Disord 2022; 52:5114-5125. [PMID: 35708824 PMCID: PMC9200933 DOI: 10.1007/s10803-022-05606-y] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 05/06/2022] [Indexed: 11/26/2022]
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.
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Affiliation(s)
- Sara Julsrud Holtman
- College of Social and Behavioral Sciences, Northwest University, 6710 108th Ave NE, Kirkland, WA 98033 USA
- Fraser, 3333 University Ave SE, Minneapolis, MN 55414 USA
| | | | - John D. Hoch
- Fraser, 3333 University Ave SE, Minneapolis, MN 55414 USA
- Department of Educational Psychology, University of Minnesota, Twin Cities, 3333 University Ave SE, Minneapolis, MN 55414 USA
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25
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Aiello S, Leonardi E, Cerasa A, Servidio R, Famà FI, Carrozza C, Campisi A, Marino F, Scifo R, Baieli S, Corpina F, Tartarisco G, Vagni D, Pioggia G, Ruta L. Video-Feedback Approach Improves Parental Compliance to Early Behavioral Interventions in Children with Autism Spectrum Disorders during the COVID-19 Pandemic: A Pilot Investigation. CHILDREN (BASEL, SWITZERLAND) 2022; 9:1710. [PMID: 36360438 PMCID: PMC9689261 DOI: 10.3390/children9111710] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 09/28/2022] [Revised: 11/02/2022] [Accepted: 11/05/2022] [Indexed: 03/25/2025]
Abstract
In the field of autism intervention, a large amount of evidence has demonstrated that parent-mediated interventions are effective in promoting a child's learning and parent caring skills. Furthermore, remote delivery treatments are feasible and can represent a promising opportunity to reach families at distance with positive results. Recently, the sudden outbreak of COVID-19 dramatically disrupted intervention services for autism and forced an immediate reorganization of the territory services toward tele-assisted intervention programs, according to professional and local resources. Our study aimed to conduct a retrospective pilot exploratory investigation on parental compliance, participation, and satisfaction in relation to three different telehealth intervention modalities, such as video feedback, live streaming, and psychoeducation, implemented in the context of a public community setting delivering early autism intervention during the COVID-19 emergency. We found that parents who attended video feedback expressed the highest rate of compliance and participation, while parental psychoeducation showed significantly lower compliance and the highest drop-out rate. Regardless of the tele-assistance modality, all the participants expressed satisfaction with the telehealth experience, finding it useful and effective. Potential benefits and advantages of different remote modalities with reference to parent involvement and effectiveness are important aspects to be taken into account and should be further investigated in future studies.
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Affiliation(s)
- Stefania Aiello
- Institute for Biomedical Research and Innovation (IRIB), National Research Council of Italy, 98122 Messina, Italy
| | - Elisa Leonardi
- Institute for Biomedical Research and Innovation (IRIB), National Research Council of Italy, 98122 Messina, Italy
| | - Antonio Cerasa
- Institute for Biomedical Research and Innovation (IRIB), National Research Council of Italy, 98122 Messina, Italy
- S. Anna Institute and Research in Advanced Neurorehabilitation (RAN), 88900 Crotone, Italy
- Pharmacotechnology Documentation and Transfer Unit, Preclinical and Translational Pharmacology, Department of Pharmacy, Health Science and Nutrition, University of Calabria, 87036 Arcavacata, Italy
| | - Rocco Servidio
- Department of Cultures, Education and Society, University of Calabria, 87036 Arcavacata, Italy
| | - Francesca Isabella Famà
- Institute for Biomedical Research and Innovation (IRIB), National Research Council of Italy, 98122 Messina, Italy
| | - Cristina Carrozza
- Institute for Biomedical Research and Innovation (IRIB), National Research Council of Italy, 98122 Messina, Italy
| | - Agrippina Campisi
- Institute for Biomedical Research and Innovation (IRIB), National Research Council of Italy, 98122 Messina, Italy
| | - Flavia Marino
- Institute for Biomedical Research and Innovation (IRIB), National Research Council of Italy, 98122 Messina, Italy
| | - Renato Scifo
- Centre for Autism Spectrum Disorders, Child Psychiatry Unit, Provincial Health Service of Catania (ASP CT), 95100 Catania, Italy
| | - Sabrina Baieli
- Centre for Autism Spectrum Disorders, Child Psychiatry Unit, Provincial Health Service of Catania (ASP CT), 95100 Catania, Italy
| | - Flavio Corpina
- Multi-Specialist Clinical Institute for Orthopedic Trauma Care (COT), 98124 Messina, Italy
| | - Gennaro Tartarisco
- Institute for Biomedical Research and Innovation (IRIB), National Research Council of Italy, 98122 Messina, Italy
| | - David Vagni
- Institute for Biomedical Research and Innovation (IRIB), National Research Council of Italy, 98122 Messina, Italy
| | - Giovanni Pioggia
- Institute for Biomedical Research and Innovation (IRIB), National Research Council of Italy, 98122 Messina, Italy
| | - Liliana Ruta
- Institute for Biomedical Research and Innovation (IRIB), National Research Council of Italy, 98122 Messina, Italy
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26
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Adams SN, Seedat J, Neille J. Life under lockdown for children with autism spectrum disorder: Insights from families in South Africa. Child Care Health Dev 2022; 48:1008-1016. [PMID: 35253243 DOI: 10.1111/cch.12996] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/16/2020] [Revised: 02/20/2022] [Accepted: 02/21/2022] [Indexed: 01/05/2023]
Abstract
BACKGROUND Children with Autism Spectrum Disorder (ASD) remain vulnerable during the Covid-19 outbreak due to significant changes to their daily routines, social interactions and diets. In addition, these challenges may be exacerbated for children living in low- and middle-income countries (LMIC) such as South Africa where there are already barriers such as poverty, access to resources and availability of support. Understanding the impact of the Covid-19 outbreak on children with ASD is imperative in order to create awareness as well as provide equitable services and support to both children with ASD and their families. PURPOSE The study aimed to explore family-reported changes for children with ASD and their reactions and responses to the Covid-19 restrictions in South Africa. METHOD A qualitative research design was employed. Twelve families consisting of different family compositions with a total of 21 family members (mothers, fathers and grandmothers) participated in the current study using semistructured interviews. Data were transcribed and analysed using a framework method for thematic analysis. RESULTS Findings indicated that children with ASD present with unique challenges related to Covid-19. Negative themes such as children's obstructive reactions due to the immediate changes to their routines, increases in emotional dysregulation as well as loss of previously acquired skills as a result of lack of access to services during lockdown were reported. However, families also reported on positive changes such as improved social interactions as children became more accustomed to their new lockdown routines. IMPLICATIONS The Covid-19 response has had a negative impact on children with disabilities, specifically around access to services and support for both children with ASD and their families. While the future of the virus and impending lockdown measures is unknown, clinicians, providers and educators need to ensure that provisions are made for children's current adjustments as well as further adjustments to their current routines both during and after the pandemic.
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Affiliation(s)
- Skye Nandi Adams
- Department of Speech Pathology and Audiology, School of Human and Community Development, University of the Witwatersrand, Johannesburg, South Africa
| | - Jaishika Seedat
- Department of Speech Pathology and Audiology, School of Human and Community Development, University of the Witwatersrand, Johannesburg, South Africa
| | - Joanne Neille
- Department of Speech Pathology and Audiology, School of Human and Community Development, University of the Witwatersrand, Johannesburg, South Africa
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27
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Lamont-Mills A, Bayliss LT, Christensen SA. Online suicidal thoughts and/or behaviours talk: A scoping review protocol. PLoS One 2022. [PMID: 36301893 DOI: 10.17605/osf.io/agtk7] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/03/2022] Open
Abstract
The anonymity that the internet and social media affords users means that suicidal thoughts and/or behaviours can be talked about with a sense of freedom and disinhibition that is often not possible in face-to-face contexts. Better understanding online suicidal thoughts and/or behaviour talk is critical as more people turn to online spaces for support. Without this the potentiality of such spaces as sites for suicide prevention and intervention is likely to remain unrealised. Currently there are no scoping or systematic review syntheses focusing on internet and/or on social media suicidal thoughts and/or behaviour talk. This lack of synthesis is problematic as it makes it more difficult for online suicide prevention and intervention practices, policies, and our understanding of suicide to advance in a coherent and evidence-based manner. A scoping review protocol following Arksey and O'Malley's six-step modified framework has been developed to address this synthesis gap. It aims to systematically map the empirical literature that has investigated online suicidal thoughts and/or behaviours talk. It is anticipated that review outcomes could inform the training of health practitioners and peer/professional online moderators in how to best talk with people experiencing suicidal thoughts and/or behaviours. Outcomes could also form an evidence-base for developing policies and practices that focus on online places as safe spaces to talk about suicidal thoughts and/or behaviours. Developers of safe language guidelines could also use the outcomes to audit how well current guidelines reflect empirical evidence. Outcomes could enable researchers to design future online suicidal thoughts and/behaviours talk studies that extend our understandings of suicide leading to potential refinements of contemporary suicide theories/models.
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Affiliation(s)
- Andrea Lamont-Mills
- School of Psychology and Wellbeing, University of Southern Queensland, Ipswich, Queensland, Australia
| | - Luke T Bayliss
- School of Psychology and Wellbeing, University of Southern Queensland, Ipswich, Queensland, Australia
| | - Steven A Christensen
- School of Psychology and Wellbeing, University of Southern Queensland, Ipswich, Queensland, Australia
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28
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Lamont-Mills A, Bayliss LT, Christensen SA. Online suicidal thoughts and/or behaviours talk: A scoping review protocol. PLoS One 2022; 17:e0276776. [PMID: 36301893 PMCID: PMC9612572 DOI: 10.1371/journal.pone.0276776] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/27/2022] [Accepted: 10/13/2022] [Indexed: 12/03/2022] Open
Abstract
The anonymity that the internet and social media affords users means that suicidal thoughts and/or behaviours can be talked about with a sense of freedom and disinhibition that is often not possible in face-to-face contexts. Better understanding online suicidal thoughts and/or behaviour talk is critical as more people turn to online spaces for support. Without this the potentiality of such spaces as sites for suicide prevention and intervention is likely to remain unrealised. Currently there are no scoping or systematic review syntheses focusing on internet and/or on social media suicidal thoughts and/or behaviour talk. This lack of synthesis is problematic as it makes it more difficult for online suicide prevention and intervention practices, policies, and our understanding of suicide to advance in a coherent and evidence-based manner. A scoping review protocol following Arksey and O'Malley's six-step modified framework has been developed to address this synthesis gap. It aims to systematically map the empirical literature that has investigated online suicidal thoughts and/or behaviours talk. It is anticipated that review outcomes could inform the training of health practitioners and peer/professional online moderators in how to best talk with people experiencing suicidal thoughts and/or behaviours. Outcomes could also form an evidence-base for developing policies and practices that focus on online places as safe spaces to talk about suicidal thoughts and/or behaviours. Developers of safe language guidelines could also use the outcomes to audit how well current guidelines reflect empirical evidence. Outcomes could enable researchers to design future online suicidal thoughts and/behaviours talk studies that extend our understandings of suicide leading to potential refinements of contemporary suicide theories/models.
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Affiliation(s)
- Andrea Lamont-Mills
- School of Psychology and Wellbeing, University of Southern Queensland, Ipswich, Queensland, Australia
| | - Luke T. Bayliss
- School of Psychology and Wellbeing, University of Southern Queensland, Ipswich, Queensland, Australia
| | - Steven A. Christensen
- School of Psychology and Wellbeing, University of Southern Queensland, Ipswich, Queensland, Australia
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29
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Meimei L, Zenghui M. A systematic review of telehealth screening, assessment, and diagnosis of autism spectrum disorder. Child Adolesc Psychiatry Ment Health 2022; 16:79. [PMID: 36209100 PMCID: PMC9547568 DOI: 10.1186/s13034-022-00514-6] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/28/2022] [Accepted: 09/21/2022] [Indexed: 11/18/2022] Open
Abstract
There is a significant delay between parents having concerns and receiving a formal assessment and Autism Spectrum Disorder (ASD) diagnosis. Telemedicine could be an effective alternative that shortens the waiting time for parents and primary health providers in ASD screening and diagnosis. We conducted a systematic review examining the uses of telemedicine technology for ASD screening, assessment, or diagnostic purposes and to what extent sample characteristics and psychometric properties were reported. This study searched four databases from 2000 to 2022 and obtained 26 studies that met the inclusion criteria. The 17 applications used in these 26 studies were divided into three categories based on their purpose: screening, diagnostic, and assessment. The results described the data extracted, including study characteristics, applied methods, indicators seen, and psychometric properties. Among the 15 applications with psychometric properties reported, the sensitivity ranged from 0.70 to 1, and the specificity ranged from 0.38 to 1. The present study highlights the strengths and weaknesses of current telemedicine approaches and provides a basis for future research. More rigorous empirical studies with larger sample sizes are needed to understand the feasibility, strengths, and limitations of telehealth technologies for screening, assessing, and diagnosing ASD.
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Affiliation(s)
- Liu Meimei
- grid.12380.380000 0004 1754 9227Vrije University Amsterdam, Amsterdam, The Netherlands
| | - Ma Zenghui
- Beijing ALSOABA Technology Co. LTD, ALSOLIFE, Beijing, China
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30
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Bundy R, Mandy W, Crane L, Belcher H, Bourne L, Brede J, Hull L, Brinkert J, Cook J. The impact of early stages of COVID-19 on the mental health of autistic adults in the United Kingdom: A longitudinal mixed-methods study. AUTISM : THE INTERNATIONAL JOURNAL OF RESEARCH AND PRACTICE 2022; 26:1765-1782. [PMID: 35083922 PMCID: PMC9483192 DOI: 10.1177/13623613211065543] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/03/2023]
Abstract
LAY ABSTRACT During the COVID-19 pandemic, high levels of depression, anxiety and stress have been reported in the general population. However, much less has been reported about the impact of COVID-19 on the mental health of autistic people. What we did: In the present study, we investigated how the mental health of autistic adults in the United Kingdom changed during the early stages of the COVID-19 pandemic. In total, 133 participants completed an online survey at two different time points. Of the 133 participants, 70 completed the survey at the first time point just before the onset of the national lockdown. This allowed us to look at changes in their mental health, from before the lockdown to 10 to 15 weeks during lockdown. All participants (133) told us about their experiences of the pandemic. What we found: While many autistic adults told us that their mental health worsened, people's experience varied. For some autistic adults, aspects of mental health (e.g. anxiety, stress) actually improved. Participants also described social changes that had occurred, at home and in the outside world. They described feelings of uncertainty during the pandemic, and discussed how the pandemic had affected some of their previous coping strategies. Participants also told us about their difficulties in accessing healthcare services and food during the early stages of the pandemic. In our article, we discuss these findings and focus on what needs to change to ensure that autistic people are better supported as the pandemic continues.
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31
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deLeyer‐Tiarks JM, Li MG, Levine‐Schmitt M, Andrade B, Bray MA, Peters E. Advancing autism technology. PSYCHOLOGY IN THE SCHOOLS 2022. [DOI: 10.1002/pits.22802] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/11/2022]
Affiliation(s)
| | - Michael G. Li
- Department of Educational Psychology, Neag School of Education University of Connecticut Storrs Connecticut USA
| | - Michelle Levine‐Schmitt
- Department of Educational Psychology, Neag School of Education University of Connecticut Storrs Connecticut USA
| | - Bryndis Andrade
- Department of Educational Psychology, Neag School of Education University of Connecticut Storrs Connecticut USA
| | - Melissa A. Bray
- Department of Educational Psychology, Neag School of Education University of Connecticut Storrs Connecticut USA
| | - Emily Peters
- Department of Educational Psychology, Neag School of Education University of Connecticut Storrs Connecticut USA
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32
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Polónyiová K, Rašková B, Ostatníková D. Changes in Mental Health during Three Waves of the COVID-19 Pandemic in Slovakia: Neurotypical Children versus Children with Autism Spectrum Disorder and Their Parents. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2022; 19:11849. [PMID: 36231151 PMCID: PMC9565628 DOI: 10.3390/ijerph191911849] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 07/26/2022] [Revised: 09/06/2022] [Accepted: 09/14/2022] [Indexed: 06/16/2023]
Abstract
The main goal of our research was to monitor changes in the mental health of Slovak families with children with autism spectrum disorder (ASD) compared to families with neurotypical children during three waves of the COVID-19 pandemic. We focused on the prevalence of depression, anxiety, stress and different stressors of parents. In children, we explored maladaptive behavior and the availability of interventions for children with ASD. The data were collected using an extensive questionnaire including the Depression, Anxiety, and Stress Scale-42 questionnaire (DASS-42) and two subscales of the Vineland Adaptive Behavior Scales (VABS-3). The research sample consisted of a total of 506 parents, 236 of whom have a child with ASD. Parents of children with ASD reported elevated anxiety during the first wave, while changes were found in parents of neurotypical children. During the second wave, the prevalence of anxiety, depression and stress experienced by parents in both groups increased, but significantly more in parents with ASD children. The internalizing maladaptive behavior of children with ASD also increased. During the third wave, no significant differences between the groups of parents were found in stress and anxiety, but parents of ASD children scored higher in depression. Externalized maladaptive behavior of neurotypical children increased, with minimal changes in children with ASD, which can be explained by the improved therapy availability for children with ASD, also observed in our study.
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Affiliation(s)
- Katarína Polónyiová
- Academic Research Centre for Autism, Institute of Physiology, Faculty of Medicine, Comenius University, 813 72 Bratislava, Slovakia
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33
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Esther C, Natalie O, Diana B, Marie Antoinette H, Suzi D, Marcia W, Natalie S. Telehealth in a paediatric developmental metropolitan assessment clinic: Perspectives and experiences of families and clinicians. Health Expect 2022; 25:2557-2569. [PMID: 35978461 PMCID: PMC9615062 DOI: 10.1111/hex.13582] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/09/2022] [Revised: 06/16/2022] [Accepted: 07/26/2022] [Indexed: 11/28/2022] Open
Abstract
Background The application of telehealth in the paediatric setting is growing, and yet, limited research has focused on using telehealth in developmental diagnostic assessment and the consumers' perceptions of their telehealth experience. This study explored parents'/carers' and staff experiences of using telehealth as part of the developmental diagnostic assessment. Methods Parents/carers who attended an assessment between June 2020 and July 2021 that incorporated a telehealth component within a hybrid service delivery model were invited to provide feedback about their experience of telehealth appointments at a multidisciplinary developmental assessment service. All parents were invited to complete an online survey, with a sample of families being offered a telephone interview. Staff members were invited to a focus group to explore their experiences of delivering services via telehealth. Data obtained were analysed descriptively and thematically using a mixed method of analysis. Codes were categorized, enabling facilitators and barriers to be explored. Results The use of telehealth in the diagnostic assessment of complex developmental disorders received high levels of acceptance from parents/carers and staff, despite having limitations such as technical issues, difficulties building rapport between families/clinicians and limited direct observations of the child. Telehealth services are perceived to reduce costs and increase flexibility, including increased ability to accommodate family needs. Conclusions Results demonstrated that telehealth is a highly acceptable mode of service in a developmental assessment service. The current study informs the development of a hybrid service delivery model by enhancing facilitators and reducing barriers commonly reported by consumers and provides direction for future research. Patient or Public Contribution Parents or carers of children who attended a tertiary paediatric assessment unit for a diagnostic developmental assessment completed the online survey and were interviewed.
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Affiliation(s)
- Chan Esther
- Child Development Unit, The Children's Hospital at Westmead, Westmead, New South Wales, Australia
| | - Ong Natalie
- Child Development Unit, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.,University of Sydney, Sydney, New South Wales, Australia
| | - Barnett Diana
- Child Development Unit, The Children's Hospital at Westmead, Westmead, New South Wales, Australia
| | - Hodge Marie Antoinette
- Child Development Unit, The Children's Hospital at Westmead, Westmead, New South Wales, Australia
| | - Drevensek Suzi
- Child Development Unit, The Children's Hospital at Westmead, Westmead, New South Wales, Australia
| | - Williamsz Marcia
- Child Development Unit, The Children's Hospital at Westmead, Westmead, New South Wales, Australia
| | - Silove Natalie
- Child Development Unit, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.,University of Sydney, Sydney, New South Wales, Australia
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34
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La Valle C, Johnston E, Tager-Flusberg H. A systematic review of the use of telehealth to facilitate a diagnosis for children with developmental concerns. RESEARCH IN DEVELOPMENTAL DISABILITIES 2022; 127:104269. [PMID: 35636261 PMCID: PMC10521149 DOI: 10.1016/j.ridd.2022.104269] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 02/15/2021] [Revised: 04/04/2022] [Accepted: 05/17/2022] [Indexed: 06/15/2023]
Abstract
BACKGROUND Telehealth can reduce the gap between developmental concern and diagnosis. Evaluation of telehealth methods is needed for providers to make decisions about using telediagnostic assessments. AIM This systematic review examined telehealth in facilitating a diagnosis for children with developmental concerns and assessed 1) study characteristics and type of diagnostic evaluation; 2) comparison of telehealth technologies to in-person diagnostic methods; 3) feasibility and acceptability of telehealth technologies; and 4) methodological quality. METHOD AND PROCEDURES Peer-reviewed studies from PsycINFO, CINAHL, Web of Science, PubMed, Embase, and Cochrane published January 2000-July 2021 were searched using "telehealth" AND "developmental concern" AND "diagnosis". Data extraction included study characteristics, diagnostic evaluation, technology, diagnostic accuracy, feasibility, and acceptability. Methodological quality was assessed using NHLBI tools. OUTCOMES AND RESULTS Nine studies met inclusion. Children with suspected FAS, social-emotional concerns, suspected genetic conditions, and failed hearing screenings received a telediagnosis. Evaluations included dysmorphology, feeding, neurological, developmental, audiological, and psychiatric. Seven studies used videoconferencing in real-time and two used Store-and-Forward methods. High diagnostic agreement occurred between face-to-face and remote methods. Stakeholders reported high satisfaction and feasibility. Many of the studies were rated as fair quality. CONCLUSIONS AND IMPLICATIONS Findings underscore partnership models between local providers and remote specialists. Rigorous study designs with larger samples covering a wider range of developmental domains are needed to provide a stronger empirical base for providers.
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Affiliation(s)
- Chelsea La Valle
- Department of Psychological & Brain Sciences, Boston University Center for Autism Research Excellence, 100 Cummington Mall, Boston, MA 02215, USA.
| | - Emily Johnston
- Department of Psychological & Brain Sciences, Boston University Center for Autism Research Excellence, 100 Cummington Mall, Boston, MA 02215, USA.
| | - Helen Tager-Flusberg
- Department of Psychological & Brain Sciences, Boston University Center for Autism Research Excellence, 100 Cummington Mall, Boston, MA 02215, USA.
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35
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Spain D, Stewart GR, Mason D, Milner V, Fairhurst B, Robinson J, Gillan N, Ensum I, Stark E, Happe F. Telehealth Autism Diagnostic Assessments With Children, Young People, and Adults: Qualitative Interview Study With England-Wide Multidisciplinary Health Professionals. JMIR Ment Health 2022; 9:e37901. [PMID: 35857358 PMCID: PMC9302612 DOI: 10.2196/37901] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/10/2022] [Revised: 04/27/2022] [Accepted: 04/27/2022] [Indexed: 11/30/2022] Open
Abstract
BACKGROUND Autism spectrum disorder (hereafter, autism) is a common neurodevelopmental condition. Core traits can range from subtle to severe and fluctuate depending on context. Individuals can present for diagnostic assessments during childhood or adulthood. However, waiting times for assessment are typically lengthy, and many individuals wait months or even years to be seen. Traditionally, there has been a lack of standardization between services regarding how many and which multidisciplinary health professionals are involved in the assessment and the methods (diagnostic tools) that are used. The COVID-19 pandemic has affected routine service provision because of stay-at-home mandates and social distancing guidelines. Autism diagnostic services have had to adapt, such as by switching from conducting assessments in person to doing these fully via telehealth (defined as the use of remote technologies for the provision of health care) or using blended in-person or telehealth methods. OBJECTIVE This study explored health professionals' experiences of and perspectives about conducting telehealth autism diagnostic assessments, including barriers and facilitators to this, during the COVID-19 pandemic; potential telehealth training and supervision needs of health professionals; how the quality and effectiveness of telehealth autism diagnostic services can be enhanced; and experiences of delivering postdiagnostic support remotely. METHODS A total of 45 health professionals, working in varied settings across England, participated in one-off, in-depth semistructured qualitative interviews. These were conducted via videoconferencing or telephone. Altogether, participants represented 7 professional disciplines (psychiatry, medicine, psychology, speech and language therapy, occupational therapy, nursing, and social work). The data were then analyzed thematically. RESULTS Thematic analysis indicated the following 7 themes: practicalities of telehealth, telehealth autism diagnostic assessments, diagnostic conclusions, clinical considerations, postdiagnostic support, future ways of working, and health professionals' experiences and needs. Overall, telehealth autism diagnostic assessments were deemed by many participants to be convenient, flexible, and efficient for some patients, families, and health professionals. However, not all patients could be assessed in this way, for example, because of digital poverty, complex clinical presentation, or concerns about risk and safeguarding. Working remotely encouraged innovation, including the development of novel assessment measures. However, some participants expressed significant concerns about the validity and reliability of remotely assessing social communication conditions. CONCLUSIONS A shift to telehealth meant that autism diagnostic services remained operational during the COVID-19 pandemic. However, this method of working has potentially affected the parity of service, with people presenting with clinical complexity having to potentially wait longer to be seen or given a diagnostic opinion. There is also a lack of standardization in the provision of services. Further research should identify evidence-based ways of enhancing the timeliness, accessibility, and robustness of the autism diagnostic pathway, as well as the validity and reliability of telehealth methods.
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Affiliation(s)
- Debbie Spain
- Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, United Kingdom
- The National Psychology Clinic, London, United Kingdom
| | - Gavin R Stewart
- Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, United Kingdom
| | - David Mason
- Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, United Kingdom
| | - Victoria Milner
- Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, United Kingdom
- The National Psychology Clinic, London, United Kingdom
| | - Bryony Fairhurst
- The National Psychology Clinic, London, United Kingdom
- Berrywood Hospital, Northampton Healthcare National Health Service Foundation Trust, Northampton, United Kingdom
| | - Janine Robinson
- Cambridge Lifespan Autism Spectrum Service, Cambridgeshire and Peterborough National Health Service Foundation Trust, Cambridge, United Kingdom
| | - Nicola Gillan
- Bristol Autism Spectrum Service, Avon and Wiltshire Mental Health Partnership National Health Service Trust, Bristol, United Kingdom
| | - Ian Ensum
- Bristol Autism Spectrum Service, Avon and Wiltshire Mental Health Partnership National Health Service Trust, Bristol, United Kingdom
| | | | - Francesca Happe
- Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, United Kingdom
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36
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Ludwig NN, Child AE, Jashar DT, Mostow AJ, Wodka EL. Telehealth diagnosis of autism spectrum disorder through clinical cases. Clin Neuropsychol 2022; 36:960-980. [PMID: 34473008 PMCID: PMC10091235 DOI: 10.1080/13854046.2021.1970228] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/20/2022]
Abstract
A diagnosis of autism spectrum disorder (ASD) provides access to interventions that are important for fostering development and improving quality of life. Thus, the timeliness of a diagnosis should not be limited by social-distancing limitations whenever possible. Despite this, clear guidance for transitioning autism diagnostic services to a telehealth model of care in the era of the COVID-19 pandemic is lacking. At our Institute, we have adapted our approach to ASD evaluation to promote continued access to evaluation services during this unprecedented time. The purpose of this case series is to provide examples of three different approaches to ASD differential diagnostic services via telehealth that we have taken at our Institute. We illustrate our methods and clinical decision-making, based on patient characteristics and referral aims, in providing telehealth diagnostic services and discuss the advantages and limitations of telehealth utilization in the differential diagnosis of ASD. At our Institute, telehealth services have provided an invaluable opportunity to continue to confirm (or rule out) an ASD diagnosis when appropriate to facilitate access to services during this time. Future research examining the utility of telehealth in the differential diagnosis of ASD is imperative given the potential advantages of telehealth services beyond the COVID-19 pandemic for some patients.
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Affiliation(s)
- Natasha N Ludwig
- Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, MD, USA
- Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, USA
| | - Amanda E Child
- Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, MD, USA
- Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, USA
| | - Dasal Tenzin Jashar
- Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, MD, USA
- Center for Autism and Related Disorders, Kennedy Krieger Institute, Baltimore, MD, USA
| | - Allison J Mostow
- Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, MD, USA
- Center for Autism and Related Disorders, Kennedy Krieger Institute, Baltimore, MD, USA
| | - Ericka L Wodka
- Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, MD, USA
- Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, USA
- Center for Autism and Related Disorders, Kennedy Krieger Institute, Baltimore, MD, USA
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Stavropoulos KK, Heyman M, Salinas G, Baker E, Blacher J. Exploring telehealth during COVID for assessing autism spectrum disorder in a diverse sample. PSYCHOLOGY IN THE SCHOOLS 2022; 59:1319-1334. [PMID: 35572181 PMCID: PMC9088649 DOI: 10.1002/pits.22672] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/02/2021] [Revised: 10/27/2021] [Accepted: 11/15/2021] [Indexed: 11/10/2022]
Abstract
Due to the coronavirus disease 2019 (COVID-19) pandemic, the importance of telehealth has rapidly increased, in particular as many in-person clinics have closed. Early intervention is crucial for improving outcomes in children with autism spectrum disorder (ASD). As such, the need for timely assessments and diagnoses remains despite COVID-19-related closures. This study offers preliminary data collected from 23 children assessed through a no-cost autism clinic in Southern California using a novel telehealth model. This includes an overview of an adapted, telehealth version of in-person observational assessment techniques for diagnosing autism. In addition, preliminary data on social validity assessed at two points are presented. Findings suggest that caregivers found the telehealth assessment procedures acceptable and convenient, and overall were satisfied with both the assessment and the written report/verbal feedback. Implications for future uses of telehealth are discussed, including how telehealth can assist with decision-making around school-based services and/or placement.
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Affiliation(s)
| | - Michelle Heyman
- Graduate School of EducationUniversity of California, RiversideRiversideCAUSA
| | - Giselle Salinas
- Graduate School of EducationUniversity of California, RiversideRiversideCAUSA
| | - Elizabeth Baker
- Graduate School of EducationUniversity of California, RiversideRiversideCAUSA
| | - Jan Blacher
- Graduate School of EducationUniversity of California, RiversideRiversideCAUSA
- Department of PsychologyUniversity of CaliforniaLos AngelesUSA
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Expectations and Concerns about the Use of Telemedicine for Autism Spectrum Disorder: A Cross-Sectional Survey of Parents and Healthcare Professionals. J Clin Med 2022; 11:jcm11123294. [PMID: 35743364 PMCID: PMC9224762 DOI: 10.3390/jcm11123294] [Citation(s) in RCA: 13] [Impact Index Per Article: 4.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/17/2022] [Revised: 06/02/2022] [Accepted: 06/07/2022] [Indexed: 11/17/2022] Open
Abstract
Telemedicine has recently been used for diagnosis and interventions inpatients with autism spectrum disorder (ASD), traditionally performed in-person, but little attention has been paid to user expectations prior to its use. The aim of this study is to compare the expectations and concerns of 50 healthcare professionals and 45 parents of children with ASD regarding the use of telemedicine for diagnostic or treatment purposes. Parents have higher expectations for the use of telemedicine as an alternative (p = 0.0223) and supplement (p = 0.0061) to in-person diagnosis of ASD, as well as a supplement to traditional intervention (p ≤ 0.0001). In addition, while they also have greater hope for improvement in family routines (p = 0.0034) and parenting skills in child management (p = 0.0147), they express greater concern about the need for active parental involvement/supervision during telemedicine services (p = 0.015) and changes in the behaviour of the child with ASD during telemedicine services (p = 0.049). On the other hand, healthcare professionals are more concerned about barriers such as lack of devices (p = 0.000), unfamiliarity with the technology (p = 0.000), poor quality of internet connection (p = 0.006), and severity of ASD (p = 0.000). To achieve promising healthcare for ASD patients, the telemedicine service should try to meet the needs and preferences of both healthcare professionals and parents, as well as identify and, if possible, reduce perceived barriers.
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McNally Keehn R, Enneking B, James C, Tang Q, Rouse M, Hines E, Raches C, Etling A. Telehealth Evaluation of Pediatric Neurodevelopmental Disabilities During the COVID-19 Pandemic: Clinician and Caregiver Perspectives. J Dev Behav Pediatr 2022; 43:262-272. [PMID: 34954761 DOI: 10.1097/dbp.0000000000001043] [Citation(s) in RCA: 10] [Impact Index Per Article: 3.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/07/2021] [Accepted: 10/18/2021] [Indexed: 11/26/2022]
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.
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Affiliation(s)
| | | | | | - Qing Tang
- Biostatistics, Indiana University School of Medicine, Indianapolis, IN
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Wagner L, Weitlauf AS, Hine J, Corona LL, Berman AF, Nicholson A, Allen W, Black M, Warren Z. Transitioning to Telemedicine During COVID-19: Impact on Perceptions and Use of Telemedicine Procedures for the Diagnosis of Autism in Toddlers. J Autism Dev Disord 2022; 52:2247-2257. [PMID: 34085153 PMCID: PMC8175230 DOI: 10.1007/s10803-021-05112-7] [Citation(s) in RCA: 21] [Impact Index Per Article: 7.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 05/25/2021] [Indexed: 12/25/2022]
Abstract
The COVID-19 pandemic has increased the use of telemedicine as an avenue to address the need for diagnostic clarification in young children at risk for autism spectrum disorder (ASD). Although preliminary research has supported the use of telemedicine for identifying ASD in toddlers, little is known about the experiences of practitioners attempting direct-to-home tele-assessment. We surveyed diagnostic providers regarding changes in practice behavior in the initial months of the COVID-19 pandemic and their perceptions of ASD tele-assessment. We also examined the use of the TELE-ASD-PEDS, a novel tool for ASD tele-assessment, in response to COVID-19 at seven sites across the country. Results support the clinical acceptability and diagnostic utility of ASD tele-assessment while also highlighting critical avenues of future investigation.
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Affiliation(s)
- Liliana Wagner
- Vanderbilt Kennedy Center/Treatment and Research Institute for Autism Spectrum Disorders, Vanderbilt University Medical Center, 1207 17thAvenue, Suite 202, Nashville, TN, 37203, USA.
- Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN, USA.
| | - Amy S Weitlauf
- Vanderbilt Kennedy Center/Treatment and Research Institute for Autism Spectrum Disorders, Vanderbilt University Medical Center, 1207 17thAvenue, Suite 202, Nashville, TN, 37203, USA
- Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN, USA
| | - Jeffrey Hine
- Vanderbilt Kennedy Center/Treatment and Research Institute for Autism Spectrum Disorders, Vanderbilt University Medical Center, 1207 17thAvenue, Suite 202, Nashville, TN, 37203, USA
- Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN, USA
| | - Laura L Corona
- Vanderbilt Kennedy Center/Treatment and Research Institute for Autism Spectrum Disorders, Vanderbilt University Medical Center, 1207 17thAvenue, Suite 202, Nashville, TN, 37203, USA
- Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN, USA
| | - Anna F Berman
- Vanderbilt Kennedy Center/Treatment and Research Institute for Autism Spectrum Disorders, Vanderbilt University Medical Center, 1207 17thAvenue, Suite 202, Nashville, TN, 37203, USA
| | - Amy Nicholson
- Vanderbilt Kennedy Center/Treatment and Research Institute for Autism Spectrum Disorders, Vanderbilt University Medical Center, 1207 17thAvenue, Suite 202, Nashville, TN, 37203, USA
- Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN, USA
- Department of Psychiatry & Behavioral Sciences, Vanderbilt University Medical Center, Nashville, TN, USA
| | | | | | - Zachary Warren
- Vanderbilt Kennedy Center/Treatment and Research Institute for Autism Spectrum Disorders, Vanderbilt University Medical Center, 1207 17thAvenue, Suite 202, Nashville, TN, 37203, USA
- Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN, USA
- Department of Psychiatry & Behavioral Sciences, Vanderbilt University Medical Center, Nashville, TN, USA
- Department of Special Education, Vanderbilt University, Nashville, TN, USA
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Spain D, Stewart GR, Mason D, Robinson J, Capp SJ, Gillan N, Ensum I, Happé F. Autism Diagnostic Assessments With Children, Adolescents, and Adults Prior to and During the COVID-19 Pandemic: A Cross-Sectional Survey of Professionals. Front Psychiatry 2022; 13:789449. [PMID: 35573336 PMCID: PMC9096098 DOI: 10.3389/fpsyt.2022.789449] [Citation(s) in RCA: 9] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/05/2021] [Accepted: 03/23/2022] [Indexed: 12/24/2022] Open
Abstract
Background Access to timely high quality autism diagnostic assessments has traditionally been patchy; many individuals wait months, if not years, for an appointment. The onset of the COVID-19 pandemic has likely impacted autism diagnostic services. This study investigated professionals' experiences of, and thoughts about: (1) how autism diagnostic assessments were conducted before the pandemic; (2) adaptations to service provision because of the pandemic; and (3) challenges, risks, advantages and opportunities associated with autism assessments conducted via online platforms (telehealth). Method Fifty-two professionals, based in different autism diagnostic services and working with children, adolescents and/or adults, completed an online cross-sectional survey in August and September 2020. This comprised demographic questions (about professionals' roles and experiences), and closed and open questions about service provision and telehealth autism assessments. Results There was substantial variation in how autism assessments were conducted prior to and during the pandemic; for example, in relation to the number of professionals involved in the assessment and types of structured, semi-structured and unstructured measures used to conduct this. Fifty-two percent of participants (n = 27) reported some service disruption (e.g., full closure, substantial reduction in provision, and/or pausing of in person appointments). Waiting times for assessment had become longer for 58% of services (n = 30), due to pandemic-related disruption. Six themes emerged from thematic analysis of open responses: (1) the autism diagnostic pathway, pre-pandemic; (2) initial impact of the pandemic on service delivery; (3) conducting autism assessments during the pandemic; (4) working remotely; (5) improving service design and delivery; and (6) post-diagnostic support. Views about the accessibility, validity, and reliability of conducting telehealth autism assessments were polarized. Some participants considered this efficient, flexible, and adequate; others viewed this as unethical and inappropriate. What constitutes good practice in telehealth autism assessments remains unclear, but there is a general openness to using this method (potentially in a hybrid telehealth-in person model), provided rigor and standardization are enhanced. Conclusions The pandemic has potentially compounded existing bottlenecks to the autism diagnostic pathway. Future research should seek to improve timeliness, standardization, accessibility and robustness of this pathway, and the validity and reliability of telehealth autism assessments.
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Affiliation(s)
- Debbie Spain
- Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom
| | - Gavin R. Stewart
- Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom
| | - David Mason
- Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom
| | - Janine Robinson
- Cambridge Lifespan Autism Spectrum Service, Cambridge, United Kingdom
| | - Simone J. Capp
- Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom
| | - Nicola Gillan
- Bristol Autism Spectrum Service, Bristol, United Kingdom
| | - Ian Ensum
- Bristol Autism Spectrum Service, Bristol, United Kingdom
| | - Francesca Happé
- Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom
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Mire SS, Keller‐Margulis MA, Izuno‐Garcia AK, Jellinek ER, Loría Garro ES. Evaluating the feasibility of remotely administered curriculum‐based measurement for students with autism: A pilot study. PSYCHOLOGY IN THE SCHOOLS 2022. [DOI: 10.1002/pits.22668] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/08/2022]
Affiliation(s)
- Sarah S. Mire
- Department of Psychological, Health, and Learning Sciences University of Houston Houston Texas USA
| | | | - Amy K. Izuno‐Garcia
- Department of Psychological, Health, and Learning Sciences University of Houston Houston Texas USA
| | - Emily R. Jellinek
- Department of Psychological, Health, and Learning Sciences University of Houston Houston Texas USA
| | - Elías S. Loría Garro
- Department of Psychological, Health, and Learning Sciences University of Houston Houston Texas USA
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43
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Stavropoulos KKM, Bolourian Y, Blacher J. A scoping review of telehealth diagnosis of autism spectrum disorder. PLoS One 2022; 17:e0263062. [PMID: 35143494 PMCID: PMC8830614 DOI: 10.1371/journal.pone.0263062] [Citation(s) in RCA: 26] [Impact Index Per Article: 8.7] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/03/2021] [Accepted: 01/11/2022] [Indexed: 12/16/2022] Open
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.
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Affiliation(s)
| | - Yasamin Bolourian
- School of Education, University of California, Riverside, CA, United States of America
| | - Jan Blacher
- School of Education, University of California, Riverside, CA, United States of America
- Department of Psychology, University of California, Los Angeles, CA, United States of America
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44
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Ho KY, Liang JN, Budge S, Madriaga A, Meske K, Nguyenton D. Brain and Spinal Cord Adaptations Associated With Patellofemoral Pain: A Systematic Review and Meta-Analysis. Front Integr Neurosci 2022; 16:791719. [PMID: 35197832 PMCID: PMC8859985 DOI: 10.3389/fnint.2022.791719] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/26/2021] [Accepted: 01/06/2022] [Indexed: 11/16/2022] Open
Abstract
Objective To evaluate the evidence for altered cortical and spinal cord functions in individuals with patellofemoral pain (PFP). Methods We conducted a comprehensive search of databases to appraise and analyze the studies published prior to December 10, 2021 that examined spinal reflex excitability measured using Hoffmann reflex (H-reflex) amplitudes, corticospinal excitability measured using transcranial magnetic stimulation (TMS)-elicited motor evoked potential (MEP) amplitudes, motor threshold (MT), or stimulus-response (SR) curves, cortical reorganization assessed using TMS cortical mapping or structural magnetic resonance imaging (MRI), or functional changes of the brain assessed using functional MRI (fMRI) in individuals with PFP. Results Eight studies were eligible for analyses. While an earlier study showed that pain had no effect on the H-reflex amplitude of the quadriceps muscle, more recent evidence reported a decrease in vastus medialis (VM) H-reflex amplitude in participants with PFP. VM H-reflex amplitude was correlated with pain, chronicity, physical function, and isometric knee extensor torque production in participants with PFP. Altered corticospinal excitability was reported in participants with PFP, observed as increased MT in the VM and vastus lateralis (VL) muscles. In addition, cortical reorganization has been observed, where decreased number of cortical peaks, shifts and reduced volumes, and increased overlap of motor cortex representations for the VM, VL, and rectus femoris (RF) muscles were reported in participants with PFP. Conclusion There is emerging evidence on altered cortical and spinal cord functions in individuals with PFP, however, solid conclusions cannot be drawn due to limited literature available. Further research is needed to better understand the adaptations of the brain and spinal cord in this population. Systematic Review Registration https://www.crd.york.ac.uk/prospero/, identifier: CRD42020212128.
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Kryszak EM, Albright CM, Fell LA, Butter EM, Kuhlthau KA. Clinician Perspectives on Telehealth Assessment of Autism Spectrum Disorder During the COVID-19 Pandemic. J Autism Dev Disord 2022; 52:5083-5098. [PMID: 35103899 PMCID: PMC8804366 DOI: 10.1007/s10803-022-05435-z] [Citation(s) in RCA: 9] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 01/05/2022] [Indexed: 01/25/2023]
Abstract
This study examined clinician insights into telehealth assessment services for autism spectrum disorder implemented during the COVID-19 pandemic. 35 clinicians from multiple disciplines across 17 sites in the Autism Care Network were interviewed. Themes identified through qualitative analyses included factors related to confidence in diagnosis (impressions of in-home observation; child and family factors that affected diagnostic confidence; changes in rapport); patient and family factors related to telehealth (perceived family benefits of and barriers to telehealth; factors related to healthcare disparities; factors specific to non-native English speakers); and institutional and workplace factors related to transitioning to telehealth (institutional support; changes to efficacy, attendance, and work satisfaction). Results suggest that telehealth has potential to be an effective tool in autism assessment practice.
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Affiliation(s)
- Elizabeth M Kryszak
- Nationwide Children's Hospital, Columbus, OH, USA. .,Department of Pediatrics and Psychology, The Ohio State University, Columbus, OH, USA. .,Child Development Center, Nationwide Children's Hospital, 187 W. Schrock Rd., Westerville, OH, 43081, USA.
| | - Charles M Albright
- Nationwide Children's Hospital, Columbus, OH, USA.,Department of Pediatrics and Psychology, The Ohio State University, Columbus, OH, USA
| | - Lucy A Fell
- Division of Pediatric Health Outcomes Research, Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA
| | - Eric M Butter
- Nationwide Children's Hospital, Columbus, OH, USA.,Department of Pediatrics and Psychology, The Ohio State University, Columbus, OH, USA
| | - Karen A Kuhlthau
- Division of Pediatric Health Outcomes Research, Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA.,Department of Pediatrics, Harvard Medical School, Boston, MA, USA
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46
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Hudock RL, Esler AN. Clinical considerations when conducting diagnostic evaluations to identify autism spectrum disorder in young children. Clin Neuropsychol 2022; 36:921-942. [DOI: 10.1080/13854046.2022.2025907] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/03/2022]
Affiliation(s)
- Rebekah L. Hudock
- Division of Clinical Behavioral Neuroscience, Department of Pediatrics, Medical School, University of Minnesota, Minneapolis, MN, USA
| | - Amy N. Esler
- Division of Clinical Behavioral Neuroscience, Department of Pediatrics, Medical School, University of Minnesota, Minneapolis, MN, USA
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47
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Li F, Wu D, Ren F, Shen L, Xue M, Yu J, Zhang L, Tang Y, Liu X, Tao M, Zhou L, Jiang L, Xu M, Li F. Effectiveness of Online-Delivered Project ImPACT for Children With ASD and Their Parents: A Pilot Study During the COVID-19 Pandemic. Front Psychiatry 2022; 13:806149. [PMID: 35401276 PMCID: PMC8987566 DOI: 10.3389/fpsyt.2022.806149] [Citation(s) in RCA: 6] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/31/2021] [Accepted: 02/25/2022] [Indexed: 01/13/2023] Open
Abstract
OBJECTIVE During the COVID-19 pandemic, face-to-face intervention services for families of children with autism spectrum disorder (ASD) were limited. This study aimed to evaluate the effectiveness of an 8-week, online-delivered Project ImPACT program for children with ASD and their parents in China during the COVID-19 pandemic. METHODS A pilot non-randomized study with a waitlist control group was conducted in 68 children with ASD and their parents in the Department of Developmental and Behavioral Pediatrics between April 15, 2020 and March 19, 2021. Participants were allocated to either the intervention (IG) or the waitlist group (WLG) according to their order of recruitment. Parents in the IG immediately received 8 weeks of the online-delivered Project ImPACT program, and the WLG received the same program with a delay when the IG had completed all sessions. Participants in both groups received treatment as usual during the research period. RESULTS The online-delivered Project ImPACT program significantly improved the parent-reported social communication skills of children with ASD. Furthermore, parent's involvement in the training program produced a collateral reduction in parenting stress and an increase in perceived competence in the parental role. Parents rated the program acceptable in terms of curriculum schedule, session content, homework assignments, and therapist feedback. CONCLUSIONS The 8-week, online-delivered Project ImPACT program is a feasible and effective social skill training program for families of children with ASD in China during the COVID-19 pandemic. Due to the methodological limitations, randomized controlled studies with larger sample sizes are suggested to provide more solid evidence.
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Affiliation(s)
- Fēi Li
- School of Nursing, Shanghai Jiao Tong University School of Medicine, Shanghai, China.,Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education (MOE)-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China
| | - Danping Wu
- Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education (MOE)-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China
| | - Fang Ren
- Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education (MOE)-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China
| | - Lixiao Shen
- Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education (MOE)-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China
| | - Minbo Xue
- Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education (MOE)-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China
| | - Juehua Yu
- Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education (MOE)-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China
| | - Lingli Zhang
- Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education (MOE)-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China
| | - Yun Tang
- Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education (MOE)-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China.,Faculty of Education, Yunnan Normal University, Kunming, China
| | - Xin Liu
- Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education (MOE)-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China
| | - Minyi Tao
- Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education (MOE)-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China
| | - Li Zhou
- Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education (MOE)-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China.,Psychology and Neuroscience of Cognition Research Unit, University of Liège, Liège, Belgium
| | - Liping Jiang
- Department of Nursing, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China
| | - Mingyu Xu
- Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education (MOE)-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China
| | - Fei Li
- Department of Developmental and Behavioral Pediatric and Child Primary Care, Brain and Behavioral Research Unit of Shanghai Institute for Pediatric Research, Ministry of Education (MOE)-Shanghai Key Laboratory for Children's Environmental Health, Xinhua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine, Shanghai, China
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Crepeau-Hobson MF, Leech N, Russell C. CLEAR Autism Diagnostic Evaluation (CADE): Evaluation of Reliability and Validity. JOURNAL OF DEVELOPMENTAL AND PHYSICAL DISABILITIES 2021; 34:853-869. [PMID: 34873387 PMCID: PMC8636580 DOI: 10.1007/s10882-021-09828-3] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Accepted: 11/15/2021] [Indexed: 06/13/2023]
Abstract
Recent surveillance efforts indicate that 1 in 54 American children meet the criteria for Autism Spectrum Disorder (ASD), making it the fastest growing neurodevelopmental disorder in the U.S. Despite evidence that ASD can be reliably diagnosed as early as 24 months, the median age at ASD diagnosis in 2016 in the U.S. was 51 months. The CLEAR Autism Diagnostic Evaluation (CADE; Willard & Kroncke, 2019), was developed in response to the need to improve, shorten, and standardize the clinical ASD evaluation process. The CADE is a 33-item rating scale designed to be completed by caregivers and clinicians. The current study was conducted to examine the reliability and validity of the CADE using a sample of 191 individuals who received a private evaluation for ASD. Using the client's evaluation records, clinicians completed the CADE items. The coefficient alpha was .94, which indicates that the items form a scale that has high internal consistency. The CADE total scores were highly correlated with ADOS scores, with r values ranging from .52-.86, and discriminated between those participants with a diagnosis of ASD and those without (p < .001). Receiver operator characteristic (ROC) curve analyses indicated excellent diagnostic accuracy of the CADE total score (ROC area under the curve = .998). Results suggest that the CADE can be used as an efficient and accurate means of evaluating ASD. Limitations and implications for use of the CADE are discussed.
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Affiliation(s)
| | - Nancy Leech
- School of Education and Human Development, University of Colorado Denver, Denver, CO USA
| | - Courtney Russell
- School of Education and Human Development, University of Colorado Denver, Denver, CO USA
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49
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Aylward BS, Gal-Szabo DE, Taraman S. Racial, Ethnic, and Sociodemographic Disparities in Diagnosis of Children with Autism Spectrum Disorder. J Dev Behav Pediatr 2021; 42:682-689. [PMID: 34510108 PMCID: PMC8500365 DOI: 10.1097/dbp.0000000000000996] [Citation(s) in RCA: 65] [Impact Index Per Article: 16.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/03/2020] [Accepted: 06/28/2021] [Indexed: 11/26/2022]
Abstract
ABSTRACT This special article uses a biosocial-ecological framework to discuss findings in the literature on racial, ethnic, and sociodemographic diagnostic disparities in autism spectrum disorder. We draw explanations from this framework on the complex and cumulative influences of social injustices across interpersonal and systemic levels.
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Affiliation(s)
| | | | - Sharief Taraman
- Cognoa, Inc, Palo Alto, CA; and
- Department of Neurology, CHOC Children's, Orange, CA
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50
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Selick A, Bobbette N, Lunsky Y, Hamdani Y, Rayner J, Durbin J. Virtual health care for adult patients with intellectual and developmental disabilities: A scoping review. Disabil Health J 2021; 14:101132. [PMID: 34127406 PMCID: PMC9619129 DOI: 10.1016/j.dhjo.2021.101132] [Citation(s) in RCA: 18] [Impact Index Per Article: 4.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/15/2021] [Revised: 06/01/2021] [Accepted: 06/02/2021] [Indexed: 11/06/2022]
Abstract
BACKGROUND The COVID-19 pandemic led to an abrupt shift to virtual health care for many patients, including adults with intellectual and developmental disabilities (IDD). Approaches to virtual care that are successful for people without IDD may need to be adapted for adults with IDD. OBJECTIVE The aim of this scoping review was to examine what is known about virtual health care for adults with IDD and in particular, the impact of virtual delivery on access to care for this population. METHODS A comprehensive search was conducted of the academic and grey literature. A two-stage screening process was conducted by two independent reviewers and a structured data extraction template was populated for each included study. Findings were analyzed thematically using Access to Care Framework domains. RESULTS In total, 22 studies met inclusion criteria. The majority were published in the past three years and focused on specialized IDD services. A subset of 12 studies reported findings on access to care for adults with IDD. Participants generally reported high acceptability of virtual care, though some preferred face-to-face encounters. Initial results on effectiveness were positive, though limited by small sample sizes. Challenges included internet quality and technical skill or comfort. CONCLUSIONS This review suggests that it is possible to deliver accessible, high quality virtual care for adults with IDD, however, relatively little research has been conducted on this topic. Due to COVID-19 there is currently a unique opportunity and urgency to learn when and for whom virtual care can be successful and how it can be supported.
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Affiliation(s)
- Avra Selick
- University of Toronto, 27 King's College Cir, Toronto, ON, M5S 3K1, Canada; Centre for Addiction and Mental Health, 1001 Queen St, Toronto, ON, M6J 1H1, Canada.
| | - Nicole Bobbette
- Centre for Addiction and Mental Health, 1001 Queen St, Toronto, ON, M6J 1H1, Canada; Queen's University, 99 University Ave, Kingston, ON, K7L 3N6, Canada
| | - Yona Lunsky
- University of Toronto, 27 King's College Cir, Toronto, ON, M5S 3K1, Canada; Centre for Addiction and Mental Health, 1001 Queen St, Toronto, ON, M6J 1H1, Canada
| | - Yani Hamdani
- University of Toronto, 27 King's College Cir, Toronto, ON, M5S 3K1, Canada; Centre for Addiction and Mental Health, 1001 Queen St, Toronto, ON, M6J 1H1, Canada
| | - Jennifer Rayner
- University of Toronto, 27 King's College Cir, Toronto, ON, M5S 3K1, Canada
| | - Janet Durbin
- University of Toronto, 27 King's College Cir, Toronto, ON, M5S 3K1, Canada; Centre for Addiction and Mental Health, 1001 Queen St, Toronto, ON, M6J 1H1, Canada
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