Patient–Identified Indicators of High Quality Epilepsy Care

Most quality indicators are based on published evidence, or experts' opinion of what constitutes high quality of care. In order to assure that the patients' perspective was also included during the development of these CDC quality indicators, we also asked patients to identify specific situations where they received what they thought was high quality of care and poor quality of care.

After reviewing transcripts from six focus groups we found that patients in all groups reported similar themes. These patient identified quality indicators represent a number of the themes. Interestingly, several of the patient identified themes were also represented in the literature review and are included in the evidence based indicators.

The links at the bottom of this page will help you provide information to your patients for each of these quality indicators such as how to obtain psychosocial support and details about the social effects of epilepsy.

QI P1. Providers should encourage patients to become educated about epilepsy and to advocate for themselves in the healthcare system and with providers. For example, provide patients with written material about epilepsy, references to epilepsy foundation or epilepsy web sites. Primary
QI P2. Providers should communicate with patients about potential medication side effects, including cognitive, emotional, physical and sexual side effects. Primary
QI P3. Providers should give referrals to social services to assist with employment, negotiating through SSDI, insurance and alternative transportation for patients who cannot drive. Primary
QI P4. Providers should refer patients to local support groups or other resources to obtain psychosocial support. Secondary
QI P5. Providers should discuss the complexity of epilepsy treatment and explain that each patient responds to medications differently and that they may need to try several different medications before they find out what works best for that individual. 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: