Abstracts

Rationale: Epilepsy is characterised by an enduring predisposition to generate epileptic seizures and by the neurobiological, cognitive, psychological, and social consequences of this condition. In addition to the diagnosis itself and its inherent medical sequelae, the secondary outcomes can represent a substantial burden on the patient, family members and carers; both in financial and non-financial terms. While a number of studies have assessed the consequences of epilepsy, there have been none carried out on a well-defined ‘all-comers’ cohort of patients identified in an epilepsy incidence study. Our primary aims were to evaluate the early natural history of newly diagnosed epilepsy and the early impact of epilepsy on overall quality of life three years after a diagnosis had been made.

Methods: This cohort had been identified in a previous incidence study and included patients of all ages (excluding neonates) diagnosed with epilepsy during 2017 in Cork, Ireland. (Figure 1). The method involved prospective and retrospective collection of data including interrogation of patient’s charts, clinic letters and electronic hospital databases for up-to-date information on seizure frequency, history of anti-seizure drugs, seizure-related hospitalisations and deaths. Additionally, the patients or their next of kin were contacted to partake in a phone interview for further detail on their quality of life since diagnosis. Data was collected in a pseudonymised format and stored in an encrypted excel file on a password protected computer. Data will be analysed using SPSS software.

Results: The total number of patients included in the study was 336. To date, 124 interviews have been carried out (71.78% adults, 28.22% children). 22% of the cohort have died since it was established in 2017 with 76% aged over 65 years. Investigation of causes of death is ongoing. Preliminary results show that 74% of patients are taking one anti-seizure medication with 6.5% each taking two or three or more. 13% were no longer taking or had never taken any medications for seizures. 75% tolerate their medications with no side-effects. 52% report having seizure freedom of three or more years. Social outcomes that were assessed included impact on education, work, finances, mental health, relationships and social life since the diagnosis of epilepsy. Less than 45% of patients within each category reported a negative impact, with driving being the most affected at 44%. 62% had heard of Epilepsy Ireland with 22% availing of services.

Conclusions: The most significant findings thus far are that 22% of the overall cohort have died since being diagnosed with epilepsy and that of the survivors, the majority in fact have a good prognosis with only a minority reporting negative impact on markers of quality of life. Although data collection remains ongoing, we anticipate the overall findings will offer a unique perspective on the early natural history of epilepsy and its impact on quality of life in a cohort of newly diagnosed epilepsy patients within a defined geographical region.

Funding: Please list any funding that was received in support of this abstract.: Not applicable.