AI Article Synopsis
- Health research is often planned by scientists or companies without asking what people with epilepsy really need, so a special group worked together to find out what those needs are.
- They used questionnaires to gather opinions from people with epilepsy and their caregivers across Canada and then ranked the most important questions for research.
- The final list highlights key topics, like finding out more about genetic causes and treatment options, making sure future research focuses on what matters most to the epilepsy community.
Article Abstract
Background: Health research agendas are often set by researchers or by industry and may not reflect the needs and priorities of end users. This priority-setting partnership (PSP) for epilepsy was undertaken to identify the most pressing unanswered questions about epilepsy and seizures from the perspective of people with epilepsy (PWE) and their care providers.
Methods: Using the methodology developed by the James Lind Alliance (JLA), evidence uncertainties were gathered via online surveys from stakeholders across Canada. Submissions were formed into summary questions and checked against existing evidence to determine if they were true uncertainties. Verified uncertainties were then ranked by patients, caregivers, and healthcare providers and a final workshop was held to reach a consensus on the top 10 priorities.
Results: The final top 10 list reflects the priority areas of focus for research as identified by the Canadian epilepsy community, including genetic markers for diagnosis and treatment, concerns about living with the long-term effects of epilepsy, and addressing knowledge gaps in etiology and treatment approaches.
Conclusion: This project represents the first systematic evidence of patient- and clinician-centered research priorities for epilepsy. The results of this priority-setting exercise provide an opportunity for researchers and funding agencies to align their agendas with the values and needs of the epilepsy community in order to improve clinical outcomes and quality of life (QOL) for PWE.
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| http://dx.doi.org/10.1016/j.yebeh.2022.108673 | DOI Listing |
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