V24. Seizure diaries from the patients’ perspective

Abstract

Patient-reported seizure frequency is a key measure of modern epileptology regarding both research and individual treatment. Several studies from the last two decades, however, provided unambiguous evidence that patients underreport seizures. Here, we wanted to assess how patients experience the self-monitoring of their seizures and how they evaluate the data quality of their diaries. A novel 10-sided questionnaire addressed the following domains: sociodemographic characteristics, personality, epilepsy, treatment, seizure experience (separately for day and night), and documenting seizures/not documenting seizures, respectively. The survey was distributed to 1100 adult patients from our unit. We finally received N = 170 usable questionnaires (15.3%) indicating the patients’ little interest in this issue. On average, patients estimated to be aware of 5.3 out of 10 daytime seizures (95% CI 4.1–6.5) while relatives/colleagues appear to notice 7.1 (95% CI 6.1–8.1). For nocturnal seizures, patients stated to notice 2.6 out of 10 (95% CI 1.5–3.7) while relatives notice 4.6 (95% CI 3.4–5.8). One-hundred-four patients (61%, 95% CI 54–68%) reported to keep a seizure diary. These patients estimated to document 87% (95% CI 79–95%) of all daytime seizures they were aware of; for perceived nocturnal seizures the documentation rate was 77% (95% CI 67–87%). From this patient-reported data, the rate of documented daytime seizures can be estimated as 62% (95% CI 48–77%) in documenters and 38% (95% CI 26–53%) in the total sample. The respective percentages for documented nocturnal seizures are 35% (95% CI 23–50%) in documenters and 21% (95% CI 12–34%) in the total sample ( Fig. 1 ). In view of the low return rate, our data are even likely to overestimate the average documentation quality. Patients are well aware of the inherent difficulties to provide valid seizure counts and, consistent with many studies, lacking seizure awareness is the main cause of seizure underreporting. Note: First authorship is shared by CH and BB.