Title: Defining patient preferences and priorities for treatment options and outcomes in epilepsy
Funder: Department of Health (England)

Abstract: Background Epilepsy is the commonest serious neurological condition, affecting around 350,000 adults in England. While antiepileptic drugs (AEDs) are the mainstay of treatment, the role of other non-drug interventions, most importantly surgery but also psycho-educational and complementary therapies is being increasingly explored. The wide range of options and potential outcomes mean treatment decisions for people with epilepsy (PWE) are often complex, involving careful consideration of the potential benefits and harms To date, however, no systematic empirical research has been undertaken to properly assess the views of PWE about which treatment interventions and outcomes are important. The urgent need to redress this lack of evidence is firmly endorsed by our recent consultation exercise with PWE. Aims 1. To identify which healthcare interventions are considered important by people with epilepsy and how different patient subgroups prioritise different interventions. 2. To identify which outcomes of healthcare interventions are considered important by people with epilepsy, and how the different patient subgroups prioritise different outcomes. 3. To identify views and definitions of equivalence for outcomes used in clinical trials among people with epilepsy, and to investigate perceptions of acceptable trade-offs between benefits and harm across the different subgroups. Plan of Investigation Two linked studies will utilise a range of research methods. We will use semi-structured individual interviews and focus group discussions to explore views, understandings, experiences and interpretations of treatment options, outcomes and preferences. Interviews will provide insights about how individual patient biographies relate to treatment concerns; focus groups will allow individual patient accounts to be exchanged, commented on and challenged by others. A large-scale survey, involving discrete choice methodology, will then allow examination of whether the views and preferences of the few are supported by those of the many; and to quantify the relative weightings given to these by a larger and more inclusive stakeholder group. Potential Impact This research will inform a patient-directed agenda for treatment provision and outcomes. Information about patient preferences/priorities can be incorporated into DoH/NICE policy documents and disseminated via guidelines to policy makers, healthcare providers and neurology teams Impact will also be felt via adoption of user-defined treatment outcomes into consensus statements on key research outcomes including by bodies such as the International League Against Epilepsy (ILAE) Outcomes Commission and the pharmaceutical industry in the context of clinical trials of new epilepsy treatments. Results will have a direct impact upon what information is provided, in consultations for people with epilepsy, thus improving patient autonomy and facilitating a person-centred service.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: NEUROLOGICAL