Chronic Disease Management

While many patients achieve complete seizure control after the initiation of antiepileptic drugs, others do not. These patients are said to have refractory seizures and require additional medical attention, including teaching about seizure triggers and medication management. They may also need further evaluation of their seizure disorder by a general neurologist or epilepsy specialist.

These quality indicators provide guidance regarding some specific actions a primary care or general neurologist will want to take when a patient does not achieve complete seizure control either because the medication is ineffective or the patient experiences drug side-effects.

Patients whose seizures are completely or nearly completely controlled also need information and assessment to assure that they are able to effectively manage their epilepsy and that they do not have other problems such as mood disorders that may require evaluation and treatment.

The links at the bottom provide information about finding epilepsy specialists and comprehensive epilepsy centers, mood disorders, and medication related side effects, and also provide tools that can help your patients track their seizures.

QI 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. Primary
QI 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. Primary
QI 3. IF the patient reports unacceptable side-effects from AED monotherapy, THEN an alternative AED should be started (with carefully planned crossover). Primary
QI 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. Primary
QI 5. IF the patient is on AEDs for 2 or more years THEN providers should assess bone health.  Primary
QI 6. 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.  Primary

QI 7. IF the patient continues to have seizures after initiating treatment THEN interventions should be performed. 
Options include:

  • Compliance assessment/ enhancement
  • Monitor AED blood levels 
  • Increase AED dose 
  • Change AED
  • Patient education re: lifestyle modificationReferral to higher level of epilepsy care

QI 8. Patients with epilepsy should receive an annual review of information including topics such as:

  • Chronic effects of epilepsy and its treatment including drug side effects, drug-drug interactions, effect on bone health
  • Contraception, family planning, and how pregnancy and menopause may affect seizures
  • Screening for mood disorders
  • Triggers and lifestyle issues that may affect seizures 
  • Impact of epilepsy on other chronic and acute diseases
  • Driving and safety issues
QI 9. A person with epilepsy should receive screening for depression at least once each year. Secondary
QI 10. IF a person with epilepsy is well controlled THEN s/he should have an annual review of adverse effects of drugs and self-management issues. Secondary

QI = Quality Indicator
Primary = Items that were rated as both valid and necessary indicators are primary quality indicators.
Secondary = Items that were rated as valid but not necessary are secondary quality indicators.

For more information:

Authored By: 
Mary Jo V. Pugh PhD RN
Steven C. Schachter MD
Authored Date: