This member-proposed project collected information from over 400 Australian families about their experiences of their child’s ASD diagnosis: from the timing of diagnosis, to the information they received, and the therapeutic services they access now. This is the first large-scale survey of ASD service delivery in Australia and how the experience of Australian families might be improved during this difficult time. It is complemented by a survey of the practices and experiences of APRN paediatricians. Ultimately, we hope this information will inform guidelines to improve this experience for Australian families and their paediatricians.
Investigators: Drs Sabine Hennel (Monash Medical Centre, Vic), Christos Symeonides (Murdoch Childrens Research Institute, Vic), Cathy Coates (Latrobe Regional Hospital, Vic), Harriet Hiscock (Royal Children’s Hospital, Vic)
Start date: October 2011
End date: July 2012
Funding bodies: Scobie and Claire Mackinnon Trust, Southern Health
Ethics approval: Royal Children’s Hospital, Victoria, (#31175A) and Southern Health, Victoria (#10318B), plus approval for Qld and WA sites.
What we asked APRN members to do:
- Identify children, aged 18 months to 18 years from their clinic records who have received any ASD diagnosis since January 1st 2010.
- Mail these families a pre-prepared letter that describes the study and gives families the opportunity to opt-out/opt-in* of hearing more (see example of opt-out letter attached).
- Display an APRN poster in their clinic to let families know that they may be approached about taking part in APRN research (see attached).
What we asked families to do:
- Complete a 10-page parent questionnaire (approx. 30 minutes) and post it back to the study team in a reply-paid envelope.
What the study team did:
- Supplied all pre-prepared letters (enclosed, sealed and stamped) for the mail out.
- Contacted families who do not opt-out/opt-in* within 2-4 weeks of receiving the letter and invite them to participate. Families choose to participate or not, and families who enrolled in the study are free to withdraw at any time.
A message from the study team:
We have finished recruitment and data collection and are in the data analysis and paper writing stage. Thank you to all families and our APRN members who are participating in the study. We had 53 paediatricians participated in this study and 45 (85%) paediatrician surveys were returned. There were 1127 interested and eligible families that were sent questionnaires with 404 (36%) questionnaires returned.
Parents said there were many aspects of information that were important, particularly what the diagnosis means and finding allied health professionals with ASD experience. The study found that there are some areas where paediatricians are meeting parent information needs (e.g. how the diagnosis was made) and gaps that may need addressing (e.g. school support and ways to explain the diagnosis to the child).
We are pleased to announce, our paper was accepted in the Journal of Paediatrics and Child Health in December 2015. We will update this reference once it becomes available online.
Hennel S, Coates C, Symeonides C, Gulenc A, Smith L, Price A, Hiscock H. (2015). Diagnosing autism: contemporaneous surveys of parent needs and paediatric practice. Journal of Paediatrics and Child Health.2016:52(5); 506-511 JPCH link
We also collaborated with investigators on the APRN Multi-Topic Survey 2013. We have published the below paper on how paediatricians are making ASD diagnoses.
Randall M, Albein-Urios N, Brignell A, Gulenc A, Hennel S, Coates C, Symeonides C, Hiscock H, Marraffa C, Silove N, Bayl V, Woolfenden S, Williams, K. Diagnosing autism: Australian Paediatric Research Network surveys. Journal of Paediatrics and Child Health.2016:52(1): 11–17. doi:10.1111/jpc.13029. JPCH link
This project had two abstracts accepted at the Asia Pacific Autism Conference (APAC) in Adelaide on the 8th-10th of August 2013.
APRN members Sabine Hennel (VIC) and Cathy Coates (VIC) presented:
- Information needs of families after a diagnosis of an Autism Spectrum Disorder: a cross sectional survey of parents by the Australian Paediatric Research Network
- Paediatrician approaches to diagnosis of an Autism Spectrum Disorder: a survey of Paediatricians by the Australian Paediatric Research Network
For more information on the conference please visit: http://www.apac13.org.au/
We propose a written resource kit for paediatricians to run through with families given the sheer volume of information.
Contact: If you would like more information, please email us at email@example.com.
* Families are not asked to commit to participating to the project at this point. APRN members working at Southern Health who see public patients use an opt-in procedure (Southern Health Ethics approval). All other APRN members use the opt-out procedure (Royal Children’s Hospital Ethics approval).