Patient Quality of Life Survey

Objective

Quality of life (QoL) in patients with epilepsy may be affected by numerous complex factors such as disease severity, antiepileptic drugs, stigma, and comorbid conditions. Comorbidities can affect QoL even in the absence of active seizures and may be stronger predictors for QoL than seizure-related factors. Observational studies on the prevalence of comorbidities and AEs typically recruit more easily accessed patients who may be in the more severe end of the disease spectrum. This group of patients may not be representative of a broader population of patients with epilepsy, which includes those who are well-controlled or who do not regularly access tertiary hospital services or specialised care. Understanding for patients with less severe epilepsy is therefore limited. The objective of this study was to generate real world evidence to explore the QoL of patients with epilepsy in Australia and determine the relationship between QoL and presence of comorbidities and AEs from antiepileptic drugs.

Methods

Patient-centric Surveys were designed and administered via an online survey platform and completed by either patients with epilepsy or their carers by proxy. Respondents were recruited via the social media channels of patient advocacy groups such as Epilepsy Australia, Epilepsy Action, and Epilepsy Foundation, and on MedAdvisor, an Australian personal medication management mobile application.

Validated questionnaires such as the Generalized Anxiety Disorder 7-item (GAD-7) scale, the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E), and the Patient-Weighted Quality of Life in Epilepsy Inventory (QOLIE-10-P) were used to obtained various measures of QoL. Analyses based on a pre-specified analysis plan, developed in consultation with the client and clinicians, were subsequently conducted in R, producing clinically meaningful results for dissemination.

Impact

This study was able to capture and quantify the experience of patients living with epilepsy in Australia, particularly in terms of their struggles and unmet needs based on the current standard of care. In addition to posters and congress presentations for clinicians, the results were distributed on social media, where feedback indicated that they resonated well with patients’ lived experiences.