None listed
Conditions
Brief summary
This project will synergise and build on existing State and Federal programs to identify barriers and develop mechanisms for accurate early detection of developmental problems including autism spectrum disorders (ASD) in Australia. The project will also evaluate an integrated model of care for ASD surveillance within the primary care setting of General Practice followed by standardised assessment and care pathways incorporating the national guideline for the assessment and diagnosis of ASD in Australia (National Guideline) for further assessment and early intervention. Developed and published by Autism CRC with the support of the National Disability Insurance Agency, the National Guideline aims to create greater consistency in diagnostic practices across Australia. Aims of the project 1. To work with key stakeholders to: (a) develop a method for ‘universal’ surveillance of ASD in 18- to 24-month-olds across Australia, and (b) carry out a “real life” evaluation of a care pathway for children at ‘high likelihood’ for ASD using the National Guideline. 2. To examine the Autism Surveillance Pathway (ASP) with regard to uptake and completion of the surveillance program and the accurate diagnosis of ASD against the current program (Surveillance as Usual [SaU]). 3. To determine acceptability, feasibility, and effectiveness of this surveillance protocol. A major outcome of this project will be the cooperation of various agencies and organisations, which will enable the embedding of the surveillance program within the existing health system and facilitate the long-term sustainability of the program. In addition, this project will allow the evaluation of the National Guideline. Currently, many children are missing early intervention opportunities. In this regard, it is noteworthy that the mean age of diagnosis for ASD in Australia is 49 months which urgently requires addressing. This is in part due to the extremely low uptake of the existing surveillance programs contributing to lack of access and opportunity for early detection with flow on effect on delay in intervention and consequent long-term effects. The significance of the project is highlighted by the fact that there is escalating economic impact of ASD both from health care and from a socio-economic perspective. Early identification and early intervention can provide significant buffers to assist children with ASD to reach their optimum potential and enhance school readiness in addition to preventing the cascade of a negative developmental trajectory and these difficulties becoming entrenched with secondary consequences such as academic failure, school absence, social dysfunction and forensic involvement. Long term, this work will undoubtedly be of enormous benefit to not only children with ASD and their families, but also to the wider society in terms of increasing human capital and reducing health, social and economic impacts.
Interventions
Intervention: ASD (Autism Spectrum Disorder) surveillance pathway
Initially a parent of the participant aged between approximately 18 and 24 months will complete the following ‘surveillance’ instruments in the General Practice waiting room using either an online link on a tablet or on paper based questionnaires (if internet is not available): Participant Information and Consent form, brief demographics, Learn The Signs. Act Early (LTSAE) developmental check from Centres for Disease Control and
Intervention: ASD (Autism Spectrum Disorder) surveillance pathway Initially a parent of the participant aged between approximately 18 and 24 months will complete the following ‘surveillance’ instruments in the General Practice waiting room using either an online link on a tablet or on paper based questionnaires (if internet is not available): Participant Information and Consent form, brief demographics, Learn The Signs. Act Early (LTSAE) developmental check from Centres for Disease Control and Prevention (CDC), The Parents’ Evaluation of Developmental Status (PEDS) and the Quantitative Checklist for Autism in Toddlers-10 item (Q-CHAT-10). These questionnaires will take approximately 10-15 minutes. Then during a consultation on the same day, the General Practitioner (GP) or Practice Nurse (PN) will complete a face to face observational ‘surveillance’ instrument: the Social Attention and Communication Surveillance – online (SACS Online), which takes approximately 3-5 minutes. The assessor completing the SACS Online (GP or PN) will be noted. Parents of participants who are identified as 'at developmental risk' on both the LTSAE and PEDS or 'at risk' of autism using the SACS Online or Q-CHAT-10 will then complete the Ages and Stages Questionnaire: Social-Emotional (ASQ:SE-2) which will take approximately 10 minutes to complete (there will be the option to complete this at home). Participants identified 'at risk' on the ASQ:SE-2 or 'at risk' of autism on the SACS Online or Q-CHAT and 10% of those determined 'not at risk' (randomly selected) will be invited to undergo a “Gold Standard” diagnostic confirmation assessment at approximately 24 months of age. This assessment will take approximately 3-4 hours and will occur at the local university by research staff trained in the administration of the assessment, or at another approved location such as a community health centre. This assessment will include the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2), the Autism Diagnostic Interview-Revised (ADI-R), Mullen Scales of Early Learning (MSEL) and the Vineland Adaptive Behavior Scales, Third Edition (VABS-3) (Parent/Caregiver form). At 30 months of age the parents of all trial participants in both arms will complete the Social Responsiveness Scale (SRS-2) at home. All components of the intervention will be provided individually. GPs and PNs will undergo professional training on the surveillance program and the National Autism Guideline implementation. An eLearning program is available as an online educational resource designed to provide online training for GPs and PNs to carry out health and developmental screening and ongoing surveillance. The GP training will be available through RANZGP website as a 6 hour CPD for the full Personal Health Record checks from birth to start of school and a stand alone developmental surveillance module as a 1 hour CPD. The participating practices will be informed about the availability of the module. As the training is delivered in an online format it can be freely accessed by the GPs and broken down into the intensity or dose that suits their schedule.
Sponsors
Autism Cooperative Research Centre (Autism CRC)
Study design
Allocation
Randomised controlled trial
Primary purpose
Diagnosis
Eligibility
Sex/Gender
All
Age
18 Months to No maximum
Healthy volunteers
Yes
Inclusion criteria
Any toddler between the ages of approximately 18-24 months taken to their General Practitioner for any reason, including for an immunisation, will be part of the trial (a “universal approach”). Parents of participating toddlers are also included for the purpose of completing screening instruments and questionnaires about their toddler, and an evaluation survey at follow-up when toddler is 30 months of age.
Exclusion criteria
None
Outcome results
None listed