Novel Procedures for Evaluating Autism Online in a Culturally Diverse Population of Children (CHATA): Protocol for a mixed methods pathway development and pilot implementation evaluation Study (Preprint)

Abstract

The traditional autism assessment procedures have limitations including the cost and length of the assessments and subsequent long waiting lists (often extending to two years) as well as reduced accessibility to non-white and non-English speaking populations. Therefore, there is a need for novel, efficient, equitable and culturally sensitive autism diagnostic assessments.

The aim of the Children’s Autism Technology-Assisted Assessments (CHATA) project is the development and empirical examination of a new, open-source, autism diagnostic pathway for children up to five years old, which will be offered via Telehealth. This novel diagnostic pathway is designed to be applicable to a culturally and linguistically diverse population, and the protocol can be integrated within existing NHS digital systems.

This is an intervention development, clinical validation and pilot implementation evaluation study, where the intervention is an online autism assessment pathway. Best available evidence, co-production and mixed methods development and usability data will inform the pathway development. During the clinical validation phase, the diagnostic results from the novel assessment will be compared with the current “gold-standard” clinical face-to-face evaluation conducted by a well-established multidisciplinary team in ~35 children from diverse ethnic backgrounds in Newham, London. We will compare the online procedure with subsequent conventional assessments of the same children in the Children with Autism in Newham Diagnosis (CHAND) service’s clinic, to obtain preliminary data and examine the sensitivity, specificity and usability of the novel proposed pathway. Following evaluation of our initial findings and necessary amendments to our protocol, we will assess a further 115 children with comparison to conventional procedures by the CHAND clinic (The CHildren with Autism in Newham Diagnosis service). Project development has been informed by extensive Patient and Public Involvement (PPI); a PPI representative is a named collaborator in the study. We will work with NHS data teams to automate data capture and to export and create clinically relevant summaries of assessment outputs.

The data will be utilised for the estimation of the diagnostic accuracy (sensitivity and specificity), validity, reliability, usability and acceptability of the new telehealth assessment. Both quantitative and qualitative analyses will be performed. Patient and public involvement (PPI) contributed to grant application in addition to designing the study procedure.

During the Covid-19 crisis, many medical consultations moved online, and telehealth services saw a rapid increase. Mindful of the imperative to expedite the reduction of waiting lists for autism assessments and the need to reach out to culturally diverse populations, we aimed to develop a novel online culturally sensitive and accurate assessment pathway, which will mitigate geographical and linguistic barriers and help reduce service costs, waiting times and inequities. The procedures we are developing in our initial study within the most culturally diverse inner-city borough in the UK, will, we anticipate, be generalizable to other populations nationwide.