A Multistate Trial of an Early Surveillance Program for Autism Within General Practices in Australia

Abstract

Background: The early detection of developmental conditions such as autism is vital to ensure children can access appropriate and timely evidence-based supports, services, and interventions. Children who have undetected developmental conditions early in life are more likely to develop later health, developmental, learning, and behavioral issues, which in turn can have a cumulative effect over the life course.Methods: The current protocol describes a multi-site, cluster randomized control trial comparing a developmental surveillance pathway for autism to usual care, using opportunistic visits to general practitioners (GPs). Units of randomization are GP clinics across two Australian states (New South Wales and Victoria), with thirty clinics within each state, each of which will aim to recruit approximately forty children aged between ~18- and 24-months, for a total of ~2,400 participants. Children will be randomized to two clusters; namely, an autism surveillance pathway (ASP) or surveillance as usual (SaU). The screening process for the ASP arm involves primary and secondary screenings for developmental concerns for autism, using both parent and GP reports and observations. Children in both arms who show signs of developmental concerns for autism will be offered a full developmental assessment by the research team at 24 months of age to determine the efficacy of developmental surveillance in successfully identifying children with autism.Trial Registration: The trial is registered with ANZCTR (ACTRN12619001200178) and reporting of the trial results will be according to recommendations in the CONSORT Statement.

Parental experience of an early developmental surveillance programme for autism within Australian general practice: a qualitative study

“…Efforts are also needed to promote the implementation of systematic processes and access to accurate and easy to use evidence-based early identification tools, such as those used in this research programme. 22 Health professional time as well as financial and logistical constraints are other factors that impede the implementation of developmental monitoring in GP, which can be overcome through the inclusion of commonwealth MBS items specifically for child developmental surveillance. Facilitating parent engagement alongside supporting primary care physicians who often have a trusting and ongoing relationship with the family to conduct developmental checks at the point of care can significantly increase opportunities for early identification of children with developmental conditions including autism.…”

“…The original programme is a cluster, multistate randomised controlled trial of an early universal surveillance programme for developmental conditions, with a particular focus on autism, that was conducted in 53 GP clinics across New South Wales (NSW) and Victoria. 22 The clinics were allocated randomly to either the intervention group, the ASP, or the control group, the surveillance as usual (SaU) pathway.…”

“…Further details on the study methodology, measures and processes can be found in our main study protocol. 22 …”

“…In this regard, the escalating impact of developmental conditions, particularly autism, has been highlighted by the fact that 31% NDIS participants have a primary diagnosis of autism, with annual support package costs estimated to be $4.9 billion. 21 Using a qualitative research methodology, this current study aimed to explore the general experiences and perspectives of parents or caregivers who participated in the 'General Practice Surveillance for Autism' programme 22 within the primary healthcare setting. We ascertained key barriers and enablers, as well as the acceptability and feasibility of the digital developmental surveillance and referral used in the intervention (autism surveillance pathway (ASP)) arm of the trial, including the uptake of recommendations, service access and satisfaction, through the eyes of parents/caregivers.…”

“…The original programme is a cluster, multistate randomised controlled trial of an early universal surveillance programme for developmental conditions, with a particular focus on autism, that was conducted in 53 GP clinics across New South Wales (NSW) and Victoria. 22 The clinics were allocated randomly to either the intervention Box 1 General interview guide for parent cohort Main questions for all parents/caregivers ⇒ Can you please tell me about your general experience when attending the GP clinic with your child? ⇒ Did the COVID-19 pandemic and lockdowns impact how often you and your child attended appointments with your GP?…”