Priority 14 from the Epilepsy (Canada) PSP

UNCERTAINTY: Is it safe to wean a person who has experienced seizures off of anti-seizure drugs and if so, when is the right time to wean off anti-seizure drugs? (JLA PSP Priority 14)
Overall ranking 14
JLA question ID 0110/14
Explanatory note Patients who have been seizure-free for a prolonged period may wish to discontinue anti-seizure drug (ASD) treatment. Additionally, some people may wish to discontinue treatment because of side effects or concerns about long-term changes. In Canada, there are no specific guidelines for when or how to wean ASDs, and the risk of seizure recurrence after weaning can be high. The decision to discontinue treatment is shared between the person with epilepsy and their health care providers after carefully considering the risks and benefits. The risk of seizure recurrence, and how much risk is considered acceptable, can be different for each person depending on their type of epilepsy, their prognosis and their lifestyle. Due to a lack of data, weaning can become a "trial and error" process. Further research is neeeded to determine the optimal duration of ASD treatment and the best time to wean medications after seizure freedom has been achieved in order to minimize the chances of seizure recurrence. 

Strozzi, I., Nolan, S. J., Sperling, M. R., Wingerchuk, D. M., & Sirven, J. (2015). Early versus late antiepileptic drug withdrawal for people with epilepsy in remission. Cochrane Database of Systematic Reviews(2). doi:10.1002/14651858.CD001902.pub2 

Health Research Classification System category Neurological 
Extra information provided by this PSP
Original uncertainty examples Why do specialists make their patients stay on medication when they were initially told they can come off of it once brain surgery is complete and the patient has been seizure free for over 1 year?  ~  When multiple medications are not stopping the seizures what is the concerns a caregiver should be aware of. Should weaning medications be considered and how to go about that.  ~ How long after surgery should a person be on medication? How many years seizure free until there is no more risk of seizures? ~ Is the treatment “for life”? Can all drugs be taken during pregnancy? What impact would drugs have on a baby if taken during pregnancy?
Submitted by People with Seizures x 12, Caregivers x 4, Friend or Family Member x 8, Health Care provider 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