Abstract
Background: Limitations of the traditional assessment for autism include the cost and length of the assessments and subsequent long waiting lists (often extending to two years) and reduced accessibility. Additionally, conventional assessment tools have questionable applicability to non-white, non-English speaking and non-male populations. There is a need for novel, efficient, equitable and culturally sensitive autism diagnostic assessments.
CHATA consists of two elements: first, a set of pre-assessment autism questionnaires delivered online (available in written and aural format).To increase accessibility we provided audio descriptions, translations into the two most commonly spoken languages of the population on our waiting list in East London(Bangla and Urdu) that caregivers can complete in their own time; second, a structured, short, online observational assessment of the child’s behavior and interaction with their caregiver. Information from these two procedures is combined to determine the likelihood for an autism diagnosis.
An important aspect of this research is to develop tools that are effective and acceptable for our target populations, we addressed this by using a variety of assessment methods that are not solely English-language-based and also developing our research with input from PPI in order to establish whether our ideas are suitable and acceptable to the target population. Project development was informed by PPI before and during the study. Alongside this we gained feedback from two focus group we conducted which allowed us to refine the study procedure. Two systematic reviews informed intervention development and concluded telehealth assessments for autism were comparable to in-person assessments (above 80%).
Objective: The aim of CHATA project is development and empirical examination of a new, autism diagnostic pathway for children up to five years old, which is offered via Telehealth, integrated within usual NHS digital systems and applicable to the target population in East London where– one of the most ethically and linguistically diverse populations in the UK.
Methods: This is an intervention development and pilot implementation evaluation study. We have completed a 6-month acceptability, feasibility and usability pilot study. We conducted a clinical validation study, comparing the predictions made by the CHATA pathway with the subsequent diagnosis made by independent clinicians from the Children with Autism in Newham Diagnostic service (CHAND).
Results: Preliminary data show excellent (100%) concordance between the predictions made by the CHATA assessment and the outcomes from the CHAND assessment pathway. The CHATA process has proved to have good acceptability and feasibility. We worked closely with families and clinicians to optimise the design of the CHATA, with iterative updates to the process over the period of development.
Conclusions: A rapid increase in the use of telehealth and the need to provide accurate and convenient services to diverse populations necessitate the development of novel assessments for autism.
The longer-term objective of the CHATA project is to embed the CHATA into ‘usual care’ for children with suspected autism. We aim to provide the assessment protocol for trialling in other clinical services and adapt it to other ethnic minority languages. Also aim to modify the procedure that suitable for school-age children.