Priority 5 from the Epilepsy (Canada) PSP

UNCERTAINTY: What is the most effective testing protocol for determining causes of seizures and/or a diagnosis of epilepsy or other seizure disorders and to reduce time to diagnosis? (JLA PSP Priority 5)
Overall ranking	5
JLA question ID	0110/5
Explanatory note	The diagnosis of epilepsy can be challenging. Seizures can have many different causes, and even after testing, the cause can be unclear. The diagnosis of epilepsy can be made by different health care providers, such as family physicians, pediatricians, or neurologists. Tests that can be used to assist with diagnosis include electroencephalography (EEG), brain imaging, or genetic testing; however,there is no standard procedure, and access to testing can vary widely across the country. There is no established protocol to determine whether a person's seizures are the result of trauma to the brain, genetic variations, or other causes, or if seizures are non-epileptic. In addition, testing may not reveal any abnormalities, and there are no clear guidelines for how to proceed when tests are inconclusive. This can lead to long delays in diagnosis, or an incorrect diagnosis, and failed attempts at treatment. More research in this area is needed, as early diagnosis of seizure disorders is critical for effective treatment.
Evidence	Scottish Intercollegiate Guidelines Network (SIGN). Diagnosis and management of epilepsy in adults. Edinburgh: SIGN; 2015.(SIGN publication no. 143). [May 2015]. Available from URL: http://www.sign.ac.uk Guidelines on Neonatal Seizures. Geneva: World Health Organization; 2011.
Health Research Classification System category	Neurological

Extra information provided by this PSP
Original uncertainty examples	I understand there are Epileptic Seizures and Non-Epileptic Seizures, how can a correct diagnoses be made to differentiate between the two? If a prolonged EEG is not possible are there any specific ways to distinguish between the two? ~ Are there new tools to understand the root cause of idiopathic epilepsy? ~ Can the medical community find out if an unborn fetus has epilepsy before it's born? Do the biological parents health or chromosomes have to do with the epileptic getting epilepsy? ~ It seems many places still do not consistently follow an algorithm for diagnosing-why is this? Are we diagnosing to early? not early enough?
Submitted by	People with Seizures x 23, Caregivers x 7, Friend or Family Member x 9, Health Care provider x 2, Community Agency Representative x 2, Other x 2

Extra information provided by this PSP

Original uncertainty examples

I understand there are Epileptic Seizures and Non-Epileptic Seizures, how can a correct diagnoses be made to differentiate between the two? If a prolonged EEG is not possible are there any specific ways to distinguish between the two? ~ Are there new tools to understand the root cause of idiopathic epilepsy? ~ Can the medical community find out if an unborn fetus has epilepsy before it's born? Do the biological parents health or chromosomes have to do with the epileptic getting epilepsy? ~ It seems many places still do not consistently follow an algorithm for diagnosing-why is this? Are we diagnosing to early? not early enough?

Submitted by

People with Seizures x 23, Caregivers x 7, Friend or Family Member x 9, Health Care provider x 2, Community Agency Representative x 2, Other x 2

PSP information
PSP unique ID	0110
PSP name	Epilepsy (Canada)
Total number of uncertainties identified by this PSP.	96 (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop	6th & 7th April 2021