Unmet needs of people with epilepsy: A qualitative study exploring their journey from presentation to long-term management across five European countries
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...
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2023-04-01
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| Series: | Frontiers in Neurology |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fneur.2023.1130817/full |
| _version_ | 1797847265445937152 |
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| author | Ella Graham-Rowe Caroline Brigitte Katzer Sumira Riaz Amanda Attwood Liz Bates Ricardo Sainz-Fuertes Becky Swan |
| author_facet | Ella Graham-Rowe Caroline Brigitte Katzer Sumira Riaz Amanda Attwood Liz Bates Ricardo Sainz-Fuertes Becky Swan |
| author_sort | Ella Graham-Rowe |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-04-09T18:08:31Z |
| format | Article |
| id | doaj.art-f98ad888d72d4c4aade69c642c91b31e |
| institution | Directory Open Access Journal |
| issn | 1664-2295 |
| language | English |
| last_indexed | 2024-04-09T18:08:31Z |
| publishDate | 2023-04-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Neurology |
| spelling | doaj.art-f98ad888d72d4c4aade69c642c91b31e2023-04-14T05:21:14ZengFrontiers Media S.A.Frontiers in Neurology1664-22952023-04-011410.3389/fneur.2023.11308171130817Unmet needs of people with epilepsy: A qualitative study exploring their journey from presentation to long-term management across five European countriesElla Graham-Rowe0Caroline Brigitte Katzer1Sumira Riaz2Amanda Attwood3Liz Bates4Ricardo Sainz-Fuertes5Becky Swan6OPEN Health Communications LLP, Marlow, Buckinghamshire, United KingdomOPEN Health Communications LLP, Marlow, Buckinghamshire, United KingdomOPEN Health Communications LLP, Marlow, Buckinghamshire, United KingdomOPEN Health Communications LLP, Marlow, Buckinghamshire, United KingdomEisai Europe Ltd, Hatfield, United KingdomEisai Europe Ltd, Hatfield, United KingdomEisai Europe Ltd, Hatfield, United KingdomIntroductionEpilepsy 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.https://www.frontiersin.org/articles/10.3389/fneur.2023.1130817/fullepilepsypatient journeyemotionsqualitativemarket researchunmet needs |
| spellingShingle | Ella Graham-Rowe Caroline Brigitte Katzer Sumira Riaz Amanda Attwood Liz Bates Ricardo Sainz-Fuertes Becky Swan Unmet needs of people with epilepsy: A qualitative study exploring their journey from presentation to long-term management across five European countries Frontiers in Neurology epilepsy patient journey emotions qualitative market research unmet needs |
| title | Unmet needs of people with epilepsy: A qualitative study exploring their journey from presentation to long-term management across five European countries |
| title_full | Unmet needs of people with epilepsy: A qualitative study exploring their journey from presentation to long-term management across five European countries |
| title_fullStr | Unmet needs of people with epilepsy: A qualitative study exploring their journey from presentation to long-term management across five European countries |
| title_full_unstemmed | Unmet needs of people with epilepsy: A qualitative study exploring their journey from presentation to long-term management across five European countries |
| title_short | Unmet needs of people with epilepsy: A qualitative study exploring their journey from presentation to long-term management across five European countries |
| title_sort | unmet needs of people with epilepsy a qualitative study exploring their journey from presentation to long term management across five european countries |
| topic | epilepsy patient journey emotions qualitative market research unmet needs |
| url | https://www.frontiersin.org/articles/10.3389/fneur.2023.1130817/full |
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