Epilepsy-related concerns among patients with epilepsy in West China

In the present study, we aimed to investigate patient-derived epilepsy-related concerns among Chinese individuals with epilepsy and the impact of seizure control on patient concerns.

All adult patients with epilepsy who had visited the outpatient clinic at West China Hospital between July 2014 and June 2016 were invited to participate in the study. All patients were given a blank sheet of paper and asked to list any concerns they had regarding their disease in order of importance. Demographic and clinical characteristics were also evaluated while regression models were used to examine the impact of seizure control on patient concerns.

A total of 1040 patients reported 2202 concerns across 25 distinct categories. The most frequently listed concerns were worries about seizures (55.4%), maintaining a job (17.4%), and the heritability of epilepsy (16.0%). The legal right to drive was listed by only 3.5% of patients who took the survey while seizure recurrence was described by participants as the most important concern (379, 36.4%). Compared with the group with uncontrolled seizures, the group with controlled seizures reported less frequently about "holding down a job" (odds ratio (OR): 0.333 (0.187-0.591)), "fear of being injured during a seizure" (OR: 0.353 (0.183-0.682)), and "leading a normal life" (OR: 0.452 (0.234-0.871)), but they reported more frequently about "having another seizure" (OR: 2.447 (1.614-3.710)), "problems with medication side effects" (OR: 1.733 (1.148-2.616)), and their "legal right or ability to drive" (OR: 2.360 (1.094-5.092)).

Our findings indicated that Chinese adults with epilepsy had various concerns, some of which differed from those observed in Western populations. Concerns about heritability of seizures, marriage, and pregnancy were of greater concern to Chinese patients compared with Western patients while the legal right to drive appeared to be less of a concern to Chinese patients. Patients with controlled seizures may still have many concerns. Chinese physicians should monitor patient concerns even among those whose seizures remain controlled to meet their needs. More time and attention should be given to address these issues in clinical practice in the context of Chinese culture.