Title: Person centred risk communications - what works best for people with epilepsy and their clinicians (a qualitative study)
Funder: Department of Health and Social Care

Abstract: Developed with our partner charity SUDEP (Sudden Unexpected Death in Epilepsy) Action, this research will produce guidance for clinicians about how to discuss risk in clinical consultations for People With Epilepsy (PWE). It is known that PWE are at increased risk of death, and that there are easily manageable risks that can reduce death and mortality. It is a legal requirement to discuss risk with PWE. However, research and information from bereaved families and people living with epilepsy shows that risk communication does not always happen, or happen well, leaving PWE unable to make informed choices. Poor communication may be partly attributed to limited research or guidance on how to support clinicians in having these vital conversations with patients &ndash; resulting in varied, non-standardised discussions. Clinicians express concern not to upset PWE as being a limiting factor. This variation has differing effects on patients awareness and motivation to reduce risks. There are some recommendations about when to start conversations, possible support tools (e.g.: Checklists) and key areas to discuss; but guidance is vague and hidden in papers on wider topics. Therefore, best practice examples of positive, successful epilepsy risk communication are not easily identified. This study will identify best practice examples, to support future clinical discussions (& patient involvement in these) and produce guidelines exploring how best to hold conversations about risk. We will record appointments between PWE and their clinician, and analyse them using Conversation Analysis (CA) to identify how clinicians were most able to engage PWE in conversations about, and with advice about, risk. Reflections on conversations will be collected from clinicians, identifying barriers and facilitators experienced by clinicians. We will interview PWE post consultation to establish which approaches were preferred by PWE, and which were more effective at delivering advice about risk that PWE remembered after the consultation, assessed from the interview and use of a checklist. A multi-level analysis will draw out best practice. This includes recursive analysis between the research team, participants and our PPI consultation group. The research team will focus on thematic analysis of the interview data and reflections (what was preferred by PWE and clinicians), and patterns revealed through CA (how to introduce risk and offer advice). Joint analysis sessions will be held with participants (PWE and clinicians) to enhance rigor and credibility, ensure relevant analytic focus, consider carefully what is 'best practice' and the feasibility of implementation. PPI consultation sessions will discuss findings and transferability to different settings, furthering definitions of 'good practice'. We will develop a training protocol, and proposal for a programme grant - trialing the training protocol, and extending the research to encompass carers and primary care sites, using a learning spread approach. In the immediate term, sites will receive training, leading directly to improved patient experience/outcome. Conference presentations, academic publications, and information sheets will be produced. The intervention will not necessarily lead to a decrease in deaths. This is a risk modification tool. This will be made clear to clinicians and participants.

Lay abstract: Each week, 21 people with epilepsy die, yet at least 42% of these deaths could be prevented. Sudden Unexpected Death in Epilepsy (SUDEP &ndash; when someone with epilepsy dies and no other cause can be found) is a leading cause. Other causes include accidents, drownings, suicides, and seizures lasting a long time, or many seizures where the person stays unconscious in-between them. There are risk factors linked to epilepsy deaths which many people with epilepsy are not told about. Yet some can be reduced if known about. Reasons for not communicating risks vary from: clinicians being unaware fear of frightening patients time pressures these conversations being others responsibility Epilepsy guidelines recognise risk communication as important, a view supported by people with epilepsy, clinicians, researchers and those bereaved by epilepsy. Many bereaved people tell us they were unaware of epilepsy risks or SUDEP until after their relative died. The charity SUDEP Action raises awareness of this issue. They support this research and will ensure it consults with people with experience of living with epilepsy by creating a expert patient group . Risk levels differ between individuals and change over time, making regular risk checks important. If clinicians and patients discuss, understand & take action, risks can be reduced. Information is available from research and charities to support positive risk management. However, a common question from clinicians is HOW do I actually HAVE the conversation? . Clinicians want specific advice on having positive, impactful conversations. Awareness of the importance of discussing epilepsy risks/SUDEP is increasing, but HOW to have conversations with positive impact is unclear and under-researched. With no national guidance on this, clinicians decide; meaning the impact on their patient s risk management also varies. By looking at risk conversations with a variety of clinicians in different settings, we will consider: How do risk conversations differ? What language is used to discuss this potentially scary topic? What do patients think about this information and how they are told? Does the conversation affect how patients think about their risks/choices? How can conversations better empower clinicians and patients to reduce risks? Conversations will be recorded, and themes/patterns analysed using Conversational Analysis (a way to study language used in conversations). Views from the clinicians and patients involved will also be collected (by follow up phone call/questionnaire). Analysis will involve the research team, expert patient group, and any willing clinicians and patients. Repeated analysis sessions will gain agreement on best ways to communicate risk. Learning from clinicians and patient experience will also help identify best practice examples. SUDEP Action will lead on creating and publicising information and training materials for clinicians to improve risk conversations. Our goal is to encourage positive patient risk management which could save lives.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING;7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL