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A major purpose of the Techni cal Information Center is to provide the broadest dissemination possi ble of information contained in DOE's Research and Development Reports to business, industry, the academic community, and federal, state and local governments. Although a small portion of this report is not reproducible, it is being made available to expedite the. availability of information on the research discussed herein.

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IntroductionEpilepsy is a neurological disease that can negatively impact a person’s physical, psychological, social, and emotional well-being. The aim of this study was to provide insights into the experiences of people with epilepsy on polytherapy (i.e., people on a combination of two or more anti-seizure medications [ASMs]), with an emphasis on their emotional journey.MethodsMarket research was conducted with 40 people with epilepsy from France, Germany, Italy, Spain, and the United Kingdom. Semi-structured interviews were analyzed using both a content and framework analysis approach. A content analysis of participants’ expressed emotions was used to illustrate the changes of emotions experienced by people with epilepsy from presentation through to monitoring and follow-up stages.ResultsIn each stage of the journey, themes and subthemes were identified under the overarching headings: Stage 1: Presentation – Life is turned upside down; Stage 2: Diagnosis – Period of learning; Stage 3: Treatment – Aspirations and experimentation; and Stage 4: Monitoring and follow-up – Feeling “out on a limb”. The research identified key unmet needs and opportunities for people with epilepsy to improve their subjective experiences at different stages of their disease journey, namely: (1) establish and promote support networks from presentation through to monitoring and follow-up stages; (2) accelerate pathway to diagnosis; (3) provide opportunities to discuss the diagnosis with patients; (4) clarify treatment-change guidelines for patients; and (5) develop a shared treatment decision-making/empowerment tool.DiscussionThe research findings and recommendations have the potential to drive change at an individual level, as well as at a healthcare level.