First seizures in adults: multicentre longitudinal study of patient reported outcome measures

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The health economic impact of epilepsy is well-studied, but similar data is lacking for first seizures. First seizures are a common and important neurological disorder, with unprovoked seizures affecting up to 10% of people and acute symptomatic seizures affecting over 3% of people during a lifetime. Establishing the true cost of first seizures is important to fully appreciate their substantial impact on patients, care-givers and society. Some data exists on the direct medical costs of first seizures, that is, the cost of health care utilisation, including hospitalisation, outpatient appointments, investigations and antiepileptic drugs. Far less studied is the indirect costs of seizures and the effect of seizures on patients’ quality of life. We propose to do this by measuring work productivity activity index (WPAI) through absenteeism, presenteeism and early retirement, and informal care needs. Additionally, patient reported outcome measures (PROMS) through validated quality of life surveys including EQ-5D, QoLIE-31 will be collected. In applicable cases, we will consider the reasons guiding initiation of antiepileptic drugs, both from clinicians’ and patients’ perspectives. People with epilepsy have a far higher prevalence of mood disorders compared to the general population. Screening for depression and anxiety via the Hospital Anxiety and Depression Scale (HADS) will help determine the onset of these disorders relative to the onset of the first seizure, and if the patients later develop epilepsy, provide a baseline measure of mood disorders to compare with subsequent evaluations. Flagging mood disorders as early as First Seizure Clinic will also promote earlier diagnosis and management, and this is an important part of providing holistic and comprehensive care. By adding indirect cost data and quality of life data to the literature, we hope to more comprehensively capture the true societal burden of first seizures, as well as to prospectively study the reasons behind decision to initiate or defer antiepileptic drug therapy.