Comparing patients’ and practitioners’ views on epilepsy concerns: A call to address memory concerns

The objective was to compare practitioners’ impressions of patients’ concerns with those expressed by the patients themselves. Prior to clinical interaction, adult patients with epilepsy and their established practitioners were asked to choose their top five concerns via a modified version of the Epilepsy Foundation Concerns Index. Patients with epilepsy (n = 257) with varying degrees of seizure control from the outpatient clinic practices of five prescribing practitioners completed the modified concerns index. The three most frequent concerns reported by patients were having a seizure unexpectedly, issues related to driving, and memory problems. These were similar to those reported by the practitioners, though memory was much less of a concern expressed by the practitioner. For the paired data, the concern with the largest gap from the patients’ perspective was “your memory.” Though there was an overlap, patients were concerned more about life issues and practitioners were concerned about clinical issues. This should serve as a major “wakeup call” to address memory problems in patients with epilepsy, regardless of seizure control.

Research Highlights
► We used a novel technique of asking both the patient with epilepsy and their practitioner about concerns.
► Patients ranked "your memory" as the second most important concern whereas it did not make the top five concerns of practitioners.
► Though there was an overlap, patients were concerned more about life issues while practitioners were concerned about clinical issues.
► These results suggest that attention should be made aligning the practitioners’ priorities with the patients’.
► This should also serve as a major “wake-up call” to address memory problems in patients with epilepsy, regardless of seizure control.