Status epilepticus (SE) occurs when seizures do not stop spontaneously and can result in long-term disabilities and occasionally death. There is a paucity of high quality evidence on SE, particularly in children and causes and outcomes are different from adults. This program of research on SE uses mixed methods to address this gap in knowledge. The research includes identifying consensus research priorities among experts and a qualitative evaluation of alternatives to informed consent (which is a potential barrier to prospective emergency research).
The research included use of systematic reviews and a Delphi process to identify status epilepticus research priorities and quantitative and qualitative research on strategies to enable research in situations without prospective informed consent. Together, the research will help identify research priorities, and help in the design and conduct of further research to address knowledge gaps and improve outcomes.
The three stage Delphi study involved 54 medical specialists and 76 health consumers. From the study, Dr Furyk identified nine priority research questions for status epilepticus.
To better understand the situation with informed consent in respect to enrolling children in emergency department studies, Dr Furyk looked at the current research on informed consent in the emergency department setting and possible alternatives. He then conducted two surveys. In the first, smaller survey, 39 parents of children recruited via deferred consent into clinical trials were interviewed. A larger national survey was then conducted of 1217 adults from the community, who were broadly representative of the Australian population. In both surveys, the researchers found that overall the majority of parents and community members were supportive of ‘‘research in emergency circumstances without prospective informed consent’.
- In-kind: $15,000
- Additional funding: $90,000
- Furyk J., Franklin R.C., Watt K., Emeto T.I., Dalziel S.R., McBain-Rigg K., Stepanov N. and Babl F.E., “Community attitudes to emergency research without prospective informed consent: A survey of the general population”, Emerg Med Australas, 2018 May 2. doi: 10.1111/1742-6723.12958 [Epub ahead of print]
- Furyk J., Ray R., Watt K., Dalziel S.R., Oakely E., Mackay M., Dabscheck G., Riney K. Babl F.E., a PREDICT study, “Consensus research priorities for paediatric status epilepticus: A Delphi study of health consumers, researchers and clinicians”, Seizure, 2018; 56:104-9. doi: 10.1016/j.seizure.2018.01.025.
- Furyk J., Watt K., Emeto T.I., Dalziel S., Bodnar D., Riney K. and Babl F.E., “Review article: Paediatric status epilepticus in the pre-hospital setting: An update.”, Emerg Med Australas. 2017;29(4):383-390. doi: 10.1111/1742-6723.12824. Epub 2017 Jun 18.
- Furyk J., McBain-Rigg K., Watt K., Emeto T.I., Franklin R., Franklin D., Schibler A., Dalziel S.R., Babl F.E., Wilson C., Phillips N. and Ray R., “Qualitative evaluation of a deferred consent process in pediatric emergency research: A PREDICT study”, BMJ Open 2017;7:e018562. doi:10.1136/bmjopen-2017-018562
- Dalziel S.R., Furyk J., Bonisch M., Oakley E., Borland M., Neutze J., , Donath S., Sharpe C., Harvey S., Davidson A., Craig S., Phillips N., George S., Rao A., Cheng N., Zhang M., Sinn K., Kochar A., Brabyn C., Babl F.E.; PREDICT research network, “A multicentre randomised controlled trial of levetiracetam versus phenytoin for convulsive status epilepticus in children (protocol): Convulsive Status Epilepticus Paediatric Trial (ConSEPT) - a PREDICT study”, BMC pediatrics. 2017 Jun 22;17(1):152. PubMed PMID: 28641582. Pubmed Central PMCID: 5480418.
- Furyk J.S., Lawton L., Ting J.Y., Taylor D.M., “Perspective: Informed Consent in emergency care research: An oxymoron”, Emergency medicine Australasia: Emerg Med Australas. . 2017;29(1):110-2. doi.org/10.1111/1742-6723.12642 Epub 28 July 2016.
- Furyk J. & Dalziel S. (2018), “Seizures and non-epileptic events”. In Cameron P., Browne G.J., Mitra B., t Dalziel S. and Craig S., (Eds), Textbook of Paediatric Emergency Medicine. Elsevier Health Sciences, United Kingdom (3rd ed; pp243 – 247).
- Poster: Furyk J., Ray R., Watt K., Dalziel S., Oakley E., et al., “Consensus research priorities for paediatric status epilepticus: a Delphi study of consumers, researchers and clinicians”, 6th London-Innsbruck Colloquium on status epilepticus, 6-8 April 2017, Salzburg, Austria.
- Oral: Furyk J., Ray R., McBain-Rigg K., Fox H., Babl F., Schibler A., Franklin D., Dalziel S., PREDICT network, “Qualitative evaluation of a deferred consent process in paediatric emergency research”, ACEM Annual Scientific Meeting, Nov 2016, Queenstown, New Zealand.