The Top 10 Epilepsy Research Priorities: A UK Priority Setting Partnership
Abstract number :
1.398
Submission category :
13. Health Services (Delivery of Care, Access to Care, Health Care Models)
Year :
2022
Submission ID :
2204712
Source :
www.aesnet.org
Presentation date :
12/3/2022 12:00:00 PM
Published date :
Nov 22, 2022, 05:26 AM
Authors :
Rhys Thomas, BSc, MBChB, MSc, PhD, FRCP – Newcastle University; Anna Norton, Ms – Epilepsy Research UK; Caoimhe Twohig-Bennett, Dr – Epilepsy Research UK; Maxine Smeaton, Ms – Epilepsy Research UK; Jack Armstrong, Mr – Epilepsy Research UK; Samantha Ashby, Ms – SUDEP Action; Hannah Cock, Prof – St George's Hospital; Anne Coxon, Dr – Epilepsy Research UK; Jon Dixon, Dr – University of Sheffield; Abbie Fearon, Ms – Epilepsy Research UK; Michael Kinney, Dr – Belfast Health and Social Care Trust; Anthony Marson, Prof – The University of Liverpool; Andree Mayne, Ms – Epilepsy Society; Tom McLaughlan, Mr – Epilepsy Research UK; James Mitchell, Dr – Universirty of Liverpool; Rosemarie Pardington, Ms – Young Epilepsy; Angie Pullen, Ms – Epilepsy Action; Rohit Shankar, Prof – University of Plymouth; Juliet Solomon, Ms – British Branch ILAE; Phil Tittensor, Mr – Royal Wolverhampton NHS Trust; Sukhvir Wright, Dr – Aston University; Alice Yandle, Ms – Epilepsy Research UK; Sameer Zuberi, Prof – Royal Hospital for Children, Glasgow; Katherine Cowan, Ms – James Lind Alliance
Rationale: 600,000 people live with epilepsy in the UK, as do an estimated 65 million people worldwide. Despite epilepsy being one of the most prevalent, serious neurological conditions, funding for research into epilepsy from the UK government is disproportionately less than other neurological conditions. Epilepsy research receives just 7% of neurological research funding – only 0.3% of the total £4.8 billion ($6.5 billion U.S. dollars) spend on health-related research. To ensure that research into epilepsy takes an evidence-based approach to addressing the priorities of people affected by epilepsy, and their clinicians, we conducted a James Lind Alliance (JLA) Priority Setting Partnership (PSP) to identify the Top 10 unanswered questions for research into epilepsy.
Methods: The UK Epilepsy PSP adopted the JLA methodology, bringing together a steering group that broadly represents the diverse epilepsy community in the UK: people affected by epilepsy, clinicians working in epilepsy and key patient organisations from across the UK. This represented all geographic regions and both adult and paediatric care. The steering group developed a survey that collected the epilepsy community’s research priorities and demographic data. These research priorities were categorised and grouped before being translated into distinct researchable questions. To ensure the questions had not been previously answered by research, an “evidence checking” process was undertaken literature review and an artificial intelligent tool "Elicit." We removed questions already answered by research and the unanswered questions formed the basis for a second shortlisting survey of the epilepsy community. The final Top 10 questions for research into epilepsy were established during a final priority setting workshop.
Results: The first UK Epilepsy PSP survey received a total of 5,418 research priorities from over 2,000 people within 14 weeks. The highest proportion of survey responses were from people with epilepsy (45.8%) followed by parents of children with epilepsy (19.7%). A total of 541 responses were from healthcare professionals working in epilepsy, with the highest proportion attributed to epilepsy specialist nurses (13.5%) and adult neurologists (12.6%). Geographically, survey responses were from across all regions of the UK. Most frequently reported research priorities included treatment side effects, anti-seizure medications, seizure management (including technology) and SUDEP. Epilepsy Research UK will announce the final Top 10 at the ILAE British Branch meeting, taking place in October 2022.
Conclusions: The UK Epilepsy PSP is a once in a generation, national collaboration that collates the views of the UK’s diverse epilepsy community and will generate the evidence needed to influence government and institutional funders to ensure research into epilepsy receives an equitable share of research funding. Most importantly, funded research will be focused on the priorities of those most affected by epilepsy and associated conditions.
Funding: Epilepsy Research UK funded, led, and managed the programme.
Health Services (Delivery of Care, Access to Care, Health Care Models)