Implementation of quality measures and patient-reported outcomes in an epilepsy clinic

Objective To see if systematic collection of patient-reported epilepsy quality measures can identify opportunities to improve care, and to examine the associations between these measures and physical and mental health. Methods We developed a patient-reported questionnaire for medication adherence, seizure frequency, medication side effects, and driving that included the Patient-Reported Outcome Measurement Information System–10 (PROMIS-10) (physical and mental health). We offered it to all adult patients seen twice in an epilepsy clinic (January 2017–January 2018). The questionnaire was available on the web as well as a tablet provided at appointment check-in. We used the first completed questionnaire to explore the relationship between patient-reported care quality and measures of physical and mental health. Results A total of 610 unique patients (15% of the total encounters) completed a survey. Respondents were comparable to nonrespondents. Respondents reported gaps in care or opportunities for quality improvement in 48.4% (n = 295) of the encounters. Of patients who reported at least 1 seizure per month over the previous 3 months, 55.2% (n = 100) reported problems with adherence, 30.0% (n = 131) reported having problems believed to be adverse reactions to anticonvulsants, and 15.2% (n = 41) reported driving. In addition, respondents who reported either seizures over the recent 3 months, nonadherence to treatment due to cost, or anticonvulsant-associated adverse effects had consistently worse physical and mental health (all p Conclusions Systematic collection of epilepsy quality measures endorsed by the American Academy of Neurology can identify opportunities for quality improvement. Measures of epilepsy care quality predict outcomes that matter to patients.