E-Appendix 2
Potential Quality Indicators Included forFirst-Round Ratings
Quality Indicator 1IF the patient has an unprovoked first seizure, or is thought to have epilepsy,
THEN s/he should receive a complete history and full neurological examination including EEG (asleep and awake), lab values and EKG to rule out other medical etiology, and MRI imaging.
Quality Indicator 2
IF MRI is not available or is contraindicated,
THEN for acute seizures, a head CT with and without contrast should be used
Quality Indicator 3
IF a patient is thought to have a diagnosis of epilepsy
THEN the diagnosis should include a best estimation of seizure type
Quality Indicator 4
IF the patient has been diagnosed as having epilepsy by a primary care or emergency room provider
THEN the diagnosis should be confirmed by a neurologist or epilepsy specialist
Quality Indicator 5
IF the diagnosis or seizure type/ syndrome remains unclear after clinical assessment and standard EEG and the patient has frequent seizures
THEN video or ambulatory EEG should be performed within two to three weeks
Quality Indicator 6
IF the individual with a first unprovoked seizure has
- A neurological deficit
- The EEG shows unequivocal epileptic activity
- The individual and/or their family and/or care-givers consider the risk of having a further seizure unacceptable
- Brain imaging shows a structural abnormality
- Age over 60 years
THEN AED therapy should be discussed with individuals and their caregivers and offered as treatment after a first unprovoked seizure
Quality Indicator 7
IF the patient has two unprovoked seizures
THEN treatment with a single AED should be prescribed to patients
Quality Indicator 8
IF the patient continues to have seizures after 3-6 months or experiences intolerable AED adverse effects
THEN alternative monotherapy should be attempted with a cautious overlap period.
Quality Indicator 9
IF the patient has intolerable adverse effects from the first AED monotherapy
THEN a second AED should be started and built up to an adequate or maximum tolerated dose and then the first drug should be tapered off slowly
Quality Indicator 10
IF use of at least two different types of AED monotherapy has not resulted in seizure freedom
THEN referral for specialty care is needed
Quality Indicator 11
IF a newly diagnosed patient is a woman of childbearing years
THEN valproate should not be used unless at least two other AEDs have been tried
Quality Indicator 12
IF a newly diagnosed person with epilepsy is over the age of 65 and on multiple medications
THEN use of enzyme inducing AEDs (phenobarbital, phenytoin, carbamazepine) should not be started for long-term maintenance unless at least two other AEDs have been unsuccessful in stopping seizures or have intolerable adverse effects
Quality Indicator 13
IF a newly diagnosed person with epilepsy is over the age of 65 and on multiple medications
AND received initial treatment with an enzyme inducing AED (phenobarbital, phenytoin, carbamazepine),
THEN s/he should be started on a maintenance drug that is not enzyme inducing as soon as possible (even after treatment stabilization).
Quality Indicator 14
IF a newly diagnosed person with epilepsy is over the age of 65 and fails treatment with a first AED monotherapy due to continued seizures after 3-6
months or intolerable adverse effects
THEN s/he should be referred to an epilepsy expert.
Quality Indicator 15
IF a patient with epilepsy seeks care
THEN current level of seizures and drug side-effects should be monitored and documented
Quality Indicator 16
IF a patient is newly diagnosed with epilepsy
THEN the patient should receive information on:
- Diagnosis and treatment options
- Importance of taking epilepsy medications and their side-effects
- Seizure type
- His/her prognosis
- Triggers and seizure control (recreational drugs, alcohol, sleep deprivation)
- Management and self-care
- Safety and injury prevention
- Road safety and driving limitations
- Issues of disclosing epilepsy at work, if relevant
- Insurance issues
- Family planning and pregnancy issues
- Social services and voluntary organizations that provide support
Quality Indicator 17
IF the patient is thought to
-Take medication irregularly or discontinue,
- Have developed adverse effects that are unacceptable to him/her, or
-Need an AED dose adjustment
THEN monitoring of AED levels should be performed
Quality Indicator 18
IF the patient is on AEDs for 2 or more years
THEN providers should assess 25-hydroxyvitamin D and parathyroid hormone levels, with subsequent DXA scan if abnormal.
Quality Indicator 19
IF abnormalities of 25-hydroxyvitamin D and parathyroid hormone levels are found,
THEN patients should receive supplemental Vitamin D
Quality Indicator 20
IF a person with epilepsy seeks care
THEN s/he should receive screening for depression at least once each year
Quality Indicator 21
IF a person with epilepsy is found to have evidence of a mood disorder
THEN s/he should receive treatment for this disorder
Quality Indicator 22
IF a woman with epilepsy is in childbearing years
THEN she should receive daily supplemental folate.
Quality Indicator 23
IF a woman with epilepsy is in childbearing years and receives oral contraceptives in conjunction with an enzyme inducing AED
THEN they should receive minimal doses of 50 micrograms to 1 mg estrogen and ‘tricycling’ (taking three packs without a break) should be considered.
Quality Indicator 24
IF a woman with epilepsy is pregnant
THEN dose of AED and blood levels of AED should be monitored monthly and after delivery, even if NO changes in dose were required
Quality Indicator 25
IF a woman with epilepsy is pregnant
THEN a high-resolution ultrasound scan should be offered at 18-20 weeks to screen for structural abnormalities
Quality Indicator 26
IF a woman with epilepsy is pregnant
THEN Vitamin K (10mg/ day) should be prescribed in the last month of pregnancy
Quality Indicator 27
IF a woman with epilepsy has taken AEDs throughout pregnancy,
THEN she should be informed that there is no contraindication to breastfeeding while taking an AED
Quality Indicator 28
IF a person with epilepsy has controlled seizures
THEN s/he should have an annual review of seizures, adverse effects of drugs, and self-management issues
Quality Indicator 29
IF a person with epilepsy inquires about the possibility of tapering off AEDs
THEN the patient should receive information regarding the risk and benefits of continuing or withdrawing AED therapy
Quality Indicator 30
IF AED treatment is being discontinued
THEN it should be carried out slowly over 3-6 months, and one drug should be withdrawn at a time
Quality Indicator 31
IF patients with epilepsy continue to have seizures not controlled by AEDs after 3-6 months of treatment
THEN they should be referred to specialty care