Novel Procedures for Evaluating Autism Online in a Culturally Diverse Population of Children: Protocol for a Mixed Methods Pathway Development Study
BackgroundCurrent autism assessment procedures are costly and resource-intensive. The COVID-19 pandemic accelerated the adoption of telemedicine, highlighting the benefits of innovative diagnostic tools. Telemedicine-based pathways could enhance accessibility and equity in au...
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JMIR Publications
2025-02-01
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| Series: | JMIR Research Protocols |
| Online Access: | https://www.researchprotocols.org/2025/1/e55741 |
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| author | Venus Mirzaei Jeanne Wolstencroft Georgia Lockwood Estrin Eleanor Buckley Shermina Sayani Panos Katakis Reena Anand Tessa Squire Eleanor Short Paige Frankson David Skuse Michelle Heys |
| author_facet | Venus Mirzaei Jeanne Wolstencroft Georgia Lockwood Estrin Eleanor Buckley Shermina Sayani Panos Katakis Reena Anand Tessa Squire Eleanor Short Paige Frankson David Skuse Michelle Heys |
| author_sort | Venus Mirzaei |
| collection | DOAJ |
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BackgroundCurrent autism assessment procedures are costly and resource-intensive. The COVID-19 pandemic accelerated the adoption of telemedicine, highlighting the benefits of innovative diagnostic tools. Telemedicine-based pathways could enhance accessibility and equity in autism diagnostics.
ObjectiveThe Children with Autism Technology Enabled Assessment (CHATA) project aims to develop and pilot an open-source autism diagnostic pathway for children up to 5 years old, delivered through telemedicine. The pathway is designed to be culturally and linguistically adaptable, increasing its applicability to diverse populations and integrating with existing National Health Service digital systems.
MethodsInitial pathway development was informed by systematic evidence reviews, coproduction, and mixed methods usability. CHATA comprises 2 key elements: online self-completed standardized autism questionnaires and a structured online interview and observation by a trained clinician. Out of 60 families near the top of the local waiting list will be invited to participate in the pilot evaluation, assessed using both the CHATA and usual assessment pathways. Sensitivity and specificity will be calculated by comparing the diagnosis of autism through CHATA with usual care. Quantitative usability assessment will be gathered from all families using the System Usability Scale (where a mean above 68 indicates above-average usability). A subset of CHATA assessments will be reviewed for interrater reliability (measured by the Cohen κ for categorical data [diagnosis present or absent], with values indicating the level of agreement; eg, <0 indicating no agreement, 0.61-0.80 indicating substantial agreement). Qualitative data on acceptability, feasibility, and usability will be gathered from semistructured interviews with a subset of families and health care providers. We will recruit 60 families for the main pilot study (including the usability testing) and 10-15 participants for the qualitative substudy. Data will estimate CHATA’s diagnostic accuracy, validity, reliability, usability, and acceptability. Patient and public involvement will be integral throughout. The study will take place in a socio-economically deprived, ethnically diverse inner-London Borough within a community-based child health National health service responsible for the Autism assessment of children and young people up to the age of 13 years.
ResultsEthics approval was received in June 2023 (Research Ethics Committee reference 22/LO/0751; IRAS project ID 320499). Data collection commenced in April 2023 and completed in October 2024. Project end date is March 2025. As of November 2024, we had enrolled 57 participants to the pilot study and 12 to the qualitative substudy.
ConclusionsThe CHATA project aims to establish a novel, culturally sensitive, equitable, and accurate online autism assessment pathway. By addressing geographical and linguistic barriers, this pathway seeks to reduce service costs, shorten waiting times, and promote equity in autism diagnosis. The procedures developed are expected to be generalized to other populations nationwide.
International Registered Report Identifier (IRRID)DERR1-10.2196/55741 |
| format | Article |
| id | doaj-art-8ab20a87f6584204aa4d1e5a3b0c8d45 |
| institution | Kabale University |
| issn | 1929-0748 |
| language | English |
| publishDate | 2025-02-01 |
| publisher | JMIR Publications |
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| series | JMIR Research Protocols |
| spelling | doaj-art-8ab20a87f6584204aa4d1e5a3b0c8d452025-02-11T15:45:51ZengJMIR PublicationsJMIR Research Protocols1929-07482025-02-0114e5574110.2196/55741Novel Procedures for Evaluating Autism Online in a Culturally Diverse Population of Children: Protocol for a Mixed Methods Pathway Development StudyVenus Mirzaeihttps://orcid.org/0000-0002-4669-9211Jeanne Wolstencrofthttps://orcid.org/0000-0001-6160-9731Georgia Lockwood Estrinhttps://orcid.org/0000-0001-9865-1415Eleanor Buckleyhttps://orcid.org/0000-0002-6652-6051Shermina Sayanihttps://orcid.org/0009-0003-7263-044XPanos Katakishttps://orcid.org/0000-0003-0601-4246Reena Anandhttps://orcid.org/0009-0001-7316-6533Tessa Squirehttps://orcid.org/0009-0005-3237-4298Eleanor Shorthttps://orcid.org/0009-0006-6675-0957Paige Franksonhttps://orcid.org/0009-0000-6492-8586David Skusehttps://orcid.org/0000-0002-7891-5732Michelle Heyshttps://orcid.org/0000-0002-1458-505X BackgroundCurrent autism assessment procedures are costly and resource-intensive. The COVID-19 pandemic accelerated the adoption of telemedicine, highlighting the benefits of innovative diagnostic tools. Telemedicine-based pathways could enhance accessibility and equity in autism diagnostics. ObjectiveThe Children with Autism Technology Enabled Assessment (CHATA) project aims to develop and pilot an open-source autism diagnostic pathway for children up to 5 years old, delivered through telemedicine. The pathway is designed to be culturally and linguistically adaptable, increasing its applicability to diverse populations and integrating with existing National Health Service digital systems. MethodsInitial pathway development was informed by systematic evidence reviews, coproduction, and mixed methods usability. CHATA comprises 2 key elements: online self-completed standardized autism questionnaires and a structured online interview and observation by a trained clinician. Out of 60 families near the top of the local waiting list will be invited to participate in the pilot evaluation, assessed using both the CHATA and usual assessment pathways. Sensitivity and specificity will be calculated by comparing the diagnosis of autism through CHATA with usual care. Quantitative usability assessment will be gathered from all families using the System Usability Scale (where a mean above 68 indicates above-average usability). A subset of CHATA assessments will be reviewed for interrater reliability (measured by the Cohen κ for categorical data [diagnosis present or absent], with values indicating the level of agreement; eg, <0 indicating no agreement, 0.61-0.80 indicating substantial agreement). Qualitative data on acceptability, feasibility, and usability will be gathered from semistructured interviews with a subset of families and health care providers. We will recruit 60 families for the main pilot study (including the usability testing) and 10-15 participants for the qualitative substudy. Data will estimate CHATA’s diagnostic accuracy, validity, reliability, usability, and acceptability. Patient and public involvement will be integral throughout. The study will take place in a socio-economically deprived, ethnically diverse inner-London Borough within a community-based child health National health service responsible for the Autism assessment of children and young people up to the age of 13 years. ResultsEthics approval was received in June 2023 (Research Ethics Committee reference 22/LO/0751; IRAS project ID 320499). Data collection commenced in April 2023 and completed in October 2024. Project end date is March 2025. As of November 2024, we had enrolled 57 participants to the pilot study and 12 to the qualitative substudy. ConclusionsThe CHATA project aims to establish a novel, culturally sensitive, equitable, and accurate online autism assessment pathway. By addressing geographical and linguistic barriers, this pathway seeks to reduce service costs, shorten waiting times, and promote equity in autism diagnosis. The procedures developed are expected to be generalized to other populations nationwide. International Registered Report Identifier (IRRID)DERR1-10.2196/55741https://www.researchprotocols.org/2025/1/e55741 |
| spellingShingle | Venus Mirzaei Jeanne Wolstencroft Georgia Lockwood Estrin Eleanor Buckley Shermina Sayani Panos Katakis Reena Anand Tessa Squire Eleanor Short Paige Frankson David Skuse Michelle Heys Novel Procedures for Evaluating Autism Online in a Culturally Diverse Population of Children: Protocol for a Mixed Methods Pathway Development Study JMIR Research Protocols |
| title | Novel Procedures for Evaluating Autism Online in a Culturally Diverse Population of Children: Protocol for a Mixed Methods Pathway Development Study |
| title_full | Novel Procedures for Evaluating Autism Online in a Culturally Diverse Population of Children: Protocol for a Mixed Methods Pathway Development Study |
| title_fullStr | Novel Procedures for Evaluating Autism Online in a Culturally Diverse Population of Children: Protocol for a Mixed Methods Pathway Development Study |
| title_full_unstemmed | Novel Procedures for Evaluating Autism Online in a Culturally Diverse Population of Children: Protocol for a Mixed Methods Pathway Development Study |
| title_short | Novel Procedures for Evaluating Autism Online in a Culturally Diverse Population of Children: Protocol for a Mixed Methods Pathway Development Study |
| title_sort | novel procedures for evaluating autism online in a culturally diverse population of children protocol for a mixed methods pathway development study |
| url | https://www.researchprotocols.org/2025/1/e55741 |
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