Abstracts

Rationale: Though we as healthcare providers think we know what our patient concerns’ are, data from one of our recently-completed projects has caused us to re-think this notion and study it more closely. The objective of this study was to compare what patient’s concerns are to what their prescribing practitioner thinks the patient’s concerns are. Methods: Adult epilepsy patients were recruited from the Outpatient Epilepsy Clinic. Patients were asked to rank their top 5 concerns of living with epilepsy on a modified version of the Epilepsy Concerns Index (Gilliam 1999). Out of 20 concerns listed, they ranked their top 5 before their prescribing practitioner came into the room at their routine clinic visit. In parallel, before the prescribing practitioner went in to see the patient, the practitioners ranked what they believed were the patient’s top 5 concerns. All patients were known to the practitioner (last clinic visit ≤ 9 months ago). In addition to the concerns data, demographic data on the patients was collected. Results: We recruited 86 patients with epilepsy (44 women) from the Outpatient Epilepsy Clinic for this cross-sectional study. Their average age was 41.2 (± 13.8) years and the average age of seizure onset was 20.8 (± 15.7) years. Most were Caucasian (80.2%), single (44.2%), and completed high school (40.7%). The average number of people living in their household was 2.4 (± 1.1). Their mean number of seizures per month was 3.2 (± 7.1). When examining the data as a group, the top 5 ranked concerns for patients were “Your memory”, “Your seizures not being controlled”, “Having a seizure unexpectedly”, “Your legal right or ability to drive” and “Your future”. The top 5 concerns for prescribing practitioners were “Having a seizure unexpectedly”, “Your seizures not being controlled”, “Problems with medication side effects”, “Fear of being injured during a seizure” and “Your legal right or ability to drive”. When looking at the data individually, there was overlap of at least one concern between the patients and practitioners in 95% of the cases. When looking at differences within each patient, the concern with the largest gap from the patient’s perspective (Patient rank - Practitioner rank) was “Your memory”. This was followed by “Medical costs of your epilepsy” and “Being a burden or worry to your family”. The concern with the largest gap from the practitioner’s perspective (Practitioner rank - Patient rank) was “Your seizures not being controlled”. This was followed by “Fear of being injured during a seizure” and “Having a seizure unexpectedly”. Conclusions: Our data indicate a gap in understanding concerns between patients and their prescribing practitioners. Though there was some overlap, patients were concerned about life issues like memory and being a burden to others while practitioners were more concerned about clinical issues like seizure activity. Determining ways to address patient concerns can add to the current plan of care provided by our Comprehensive Epilepsy Program.