It has been demonstrated that as many as two out of three patients treated for epilepsy have seizures that are refractory (not responsive) to therapy, either because they have incomplete control of their seizures or they experience side effects from treatment that interfere with their quality of life making compliance with treatment difficult.
Besides requiring additional medical evaluation, patients with refractory seizures may benefit from education about seizure triggers and medication management. A research project funded by the Centers for Disease Control (Pugh et al, Neurology 2007;69:2020-7)developed a set of quality care measures pertaining to patients with refractory seizures. The following actions were rated as both valid and necessary indicators of quality care for patients with refractory seizures.
1. IF the diagnosis or seizure type remains unclear after the initial evaluations, or the patient has recurrent seizures THEN the patient should be referred to the next highest level of epilepsy care.
2. WHEN a patient with epilepsy receives follow-up care, THEN an estimate of the number of seizures since the last visit and an assessment of drug side effects should be documented.
3. IF the patient reports unacceptable side-effects from AED monotherapy, THEN an alternative AED should be started (with carefully planned crossover).
4. IF use of at least two different AED monotherapies has not resulted in seizure freedom, THEN referral for more highly specialized epilepsy care is indicated.
5. IF a person with epilepsy is found to have evidence of a mood disorder (e.g., depression, anxiety) THEN s/he should receive treatment or a referral for mental health care.
6. IF the patient continues to have seizures after initiating treatment THEN interventions should be performed.
Monitor AED blood levels
Increase AED dose
Patient education re: lifestyle modification
Referral to higher level of epilepsy care
To find an epilepsy specialist, go to http://www.epilepsy.com/get-help/find-doctor/find-doctor.
To find a comprehensive epilepsy center, go to http://www.epilepsy.com/get-help/find-doctor/find-epilepsy-center.
To find out more about refractory epilepsy go to http://www.epilepsy.com/information/professionals/refractory-seizures/overview.