[Back](/content/resources/epilepsy-treatment-use-and-need-for-support-services#/index.html) \\ Download\\ \\ print page print page](/content/resources/epilepsy-treatment-use-and-need-for-support-services#/index.html) \\ Print\\ \\ print page](/content/resources/epilepsy-treatment-use-and-need-for-support-services#/index.html) \\ Share](/content/resources/epilepsy-treatment-use-and-need-for-support-services#/index.html) [Share on Facebook](https://www.facebook.com/sharer/sharer.php?u=&t= "Share on Facebook") [Tweet](https://twitter.com/intent/tweet? "Tweet") [Share on LinkedIn](http://www.linkedin.com/shareArticle?mini=true&url=&title=&summary=&source= "Share on LinkedIn") Case Studies # A deeper understanding of epilepsy treatment use and need for support services ## Patient insights help transform lives Jazz Pharmaceuticals aims to transform the lives of patients and their families by developing innovative, life-changing medicines for people with serious diseases that often have limited or no therapeutic options. Epidiolex® (the only FDA-approved cannabidiol \[CBD\] product) is approved to treat seizures associated with rare, severe forms of epilepsy: Lennox-Gastaut syndrome, Dravet syndrome, and tuberous sclerosis complex. Jazz Pharmaceuticals has a history of putting the patient first. The JazzCares patient support programs help with access to treatments and services, and the company gathers feedback about patients’ health journeys directly from patients and their families through  partnerships with patient advocacy groups and other external organizations. There's growing evidence that cannabidiol reduces seizures and improves quality of life among individuals with epilepsy, but, still, little is known about the real-world use of the Epidiolex®, caregivers’ perceptions about their dependents’ condition after initiating Epidiolex®, and the impact on caregiver burden. Given the rarity of the conditions treated by Epidiolex and the burden of providing care for a chronic, often debilitating disease, Jazz Pharmaceuticals needed a partner who could survey this hard-to-reach population in a convenient, low-friction manner. ## Evidation Patient Insights connects you to the right-fit community Jazz Pharmaceuticals contacted our team to help develop and deploy a survey to better understand caregivers’ perspectives on the real-world implications of dependents’ use of Epidiolex and non-FDA-approved cannabinoid products. Using our Patient Insights solution within the Evidation platform, our team then led the scientific design of a one-time, cross-sectional survey co-developed with Jazz Pharmaceuticals. For recruitment and pre-screening, we leveraged our well-labeled, continuously updated database to identify potentially eligible Evidation Members. Data sources included previous surveys on the Evidation platform such as: - A single-question epilepsy caregiver survey: “Are you a parent or the main caregiver of a child or adult dependent who is being treated for seizures?” (~10,500 individuals) - A single-question Epidiolex caregiver survey: “Does the person you’re caring for currently take Epidiolex, a prescription medication used to treat seizures associated with Lennox-Gastaut syndrome (LGS), Dravet syndrome (DS), or tuberous sclerosis complex (TSC)?” (6,986 individuals) Analyses were performed on data from the entire cohort and from the following segments to explore differences in burden and experience by: - Race /ethnicity (underrepresented vs not underrepresented) - Sex (male vs female) - Caregiver responsibility (sole caregiver vs shared caregiving responsibilities) The process took less than six months to complete: ## Rapid engagement delivered the insights Jazz Pharmaceuticals needed Of the 346 Evidation Members who responded to the pre-screening survey, 204 self-identified caregivers (18 years and older) completed the CARE-EpiC survey. Each respondent had to provide care for an individual (age 1 year or older) who was being treated for epilepsy or a seizure condition with Epidiolex. ### Key insights - When seizures are better controlled, the caregiving experience also improves. - Caregivers require additional support for dependents’ emotional/behavioral care and physically strenuous activities. - Obtaining an Epidiolex prescription or waiting for insurance approval may be a treatment hurdle for some caregivers. | | | | | --- | --- | --- | | Outcome category | Types of insights | Finding | | Real-world use of Epidiolex | • Length of time used
• Reason for starting
• Other medications and classes used simultaneously | **47%** reported their dependent started taking Epidiolex to reduce **seizure frequency**. | | Non-FDA-approved cannabinoid experience | • Prior and current use
• Effectiveness for seizure control
• Influence of Non-FDA-approved cannabinoid use on decision to start Epidiolex | **76%** of dependents who started using the non-FDA-approved product before taking Epidiolex® were **influenced to try** Epidiolex® as a result. | | Caregiver burden | • Burden Scale for Family Caregivers—Short Version score | Caregivers who were **male** or belonged to an **underrepresented** race/ethnic community reported the **highest burden**, compared with other groups. | | Perceived impact of Epidiolex | • Change in dependent’s condition, including seizures and mood
• Change in caregiver experience, including stress, worry about seizure-related injuries | The most frequently reported caregiver changes were **reduced stress (43%)** and **less worry** about their dependent having a **seizure-related injury (43%)**. | ### 83% of study participants had wearable activity data from the past year | | | | --- | --- | | Data Type | Finding | | Average daily step count | Over the past year, **male** caregivers took **1.5 times more daily steps**, on average, than female caregivers. | | Average active minutes | Over the past year, caregivers belonging to an **underrepresented** community had **39.7 fewer active minutes** on average, than not underrepresented individuals. | | Average resting heart rate | **Sole** caregivers had a **higher average resting heart rate** over the past year, than individuals who shared caregiving responsibilities. | ## Caregiver perspectives highlight opportunities to improve the epilepsy treatment paradigm Caregivers play an important role in epilepsy management. Therefore, characterizing their experience helps prioritize decisions about treatment development, distribution, and support services based on a deeper understanding of what is actually driving patient and caregiver behaviors and outcomes in everyday life. These insights uncover barriers and opportunities to improve access, such as patient programs to offset costs not covered by insurance in this population. Data collected from this representative sample enabled more nuanced segmentations of real-world experiences that can be used to inform caregiver programs for those with the highest burden (male caregivers, sole caregivers, or caregivers from underrepresented race/ethnic communities) and marketing strategies to individuals with epilepsy who have used other non-approved cannabinoid products. ‍ **The project outcomes are also available via the:** [American Epilepsy Society (AES) 2024 Annual Meeting](https://aesnet.org/AES-annual-meeting) [32nd Annual Education Conference held by the Developmental Disabilities Nurses Association (DDNA)](https://ddna.org/conference/) # Have questions? [CONTACT US](/content/for-customers/contact-us/index.html) [Subscribe to our business newsletter](/content/for-customers/newsletter-sign-up/index.html) [Back](/content/resources/epilepsy-treatment-use-and-need-for-support-services#/index.html) [Share on Facebook](https://www.facebook.com/sharer/sharer.php?u=&t= "Share on Facebook") [Tweet](https://twitter.com/intent/tweet? "Tweet") [Share on LinkedIn](http://www.linkedin.com/shareArticle?mini=true&url=&title=&summary=&source= "Share on LinkedIn") Case Studies # A deeper understanding of epilepsy treatment use and need for support services ## Patient insights help transform lives ## Evidation Patient Insights connects you to the right-fit community Analyses were performed on data from the entire cohort and from the following segments to explore differences in burden and experience by: The process took less than six months to complete: ## Rapid engagement delivered the insights Jazz Pharmaceuticals needed ### Key insights ### 83% of study participants had wearable activity data from the past year ## Caregiver perspectives highlight opportunities to improve the epilepsy treatment paradigm ‍ **The project outcomes are also available via the:** [American Epilepsy Society (AES) 2024 Annual Meeting](https://aesnet.org/AES-annual-meeting) [32nd Annual Education Conference held by the Developmental Disabilities Nurses Association (DDNA)](https://ddna.org/conference/) # Related work [News](/content/resources/evidation-launches-temporal-proteomics-platform-and-autoimmune-cohort/index.html) [News\\ \\ January 8, 2026\\ \\ **Evidation Launches Temporal Proteomics Platform to Power Autoimmune Research**\\ \\ ReAd](/content/resources/evidation-launches-temporal-proteomics-platform-and-autoimmune-cohort/index.html) [News](/content/resources/real-world-glp-1-dosing-behaviors/index.html) [News\\ \\ December 16, 2025\\ \\ **‍Evidation Shares Insights on Real-World GLP-1 Dosing Behaviors from Over 60,000 Individuals**\\ \\ ReAd](/content/resources/real-world-glp-1-dosing-behaviors/index.html) [News](/content/resources/evidation-appoints-dr-ghazanfar-khan-as-chief-medical-officer/index.html) [News\\ \\ December 2, 2025\\ \\ **Evidation Appoints Dr. Ghazanfar Khan as Chief Medical Officer**\\ \\ ReAd](/content/resources/evidation-appoints-dr-ghazanfar-khan-as-chief-medical-officer/index.html) # Have questions? 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"Tweet") [Share on LinkedIn](http://www.linkedin.com/shareArticle?mini=true&url=&title=&summary=&source= "Share on LinkedIn") Case Studies # A deeper understanding of epilepsy treatment use and need for support services ## Patient insights help transform lives ## Evidation Patient Insights connects you to the right-fit community Analyses were performed on data from the entire cohort and from the following segments to explore differences in burden and experience by: The process took less than six months to complete: ## Rapid engagement delivered the insights Jazz Pharmaceuticals needed ### Key insights ### 83% of study participants had wearable activity data from the past year ## Caregiver perspectives highlight opportunities to improve the epilepsy treatment paradigm ‍ **The project outcomes are also available via the:** [American Epilepsy Society (AES) 2024 Annual Meeting](https://aesnet.org/AES-annual-meeting) [32nd Annual Education Conference held by the Developmental Disabilities Nurses Association (DDNA)](https://ddna.org/conference/) # Related work # Have questions? 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"Tweet") [Share on LinkedIn](http://www.linkedin.com/shareArticle?mini=true&url=&title=&summary=&source= "Share on LinkedIn") Case Studies # A deeper understanding of epilepsy treatment use and need for support services Evidation and the Duke Big Ideas Lab have announced a partnership that aims to find ways to both increase representation of underserved populations and improve adherence among all participants in digital health studies. The organizations are working together to build an analytic structure that will be available to other digital health researchers, helping to better predict study participation, adherence, and retention. Click below to read more about the project, led by Iredia M. Olaye, PhD, MSc, MHA, of Covered By Group and Evidation, in HealthLeaders. 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Morgan Annual Conference and its surrounding events. Our team looks forward to staying in touch and helping you produce better health outcomes in 2023! # Get to know your Evidation team Bertina Yen, Evidation's Senior Vice President of People & Community Bertina Yen is Evidation's Senior Vice President of People & Community, where she is responsible for the end-to-end employee experience and building a community that supports everyone's ability to show up as their authentic selves and perform their best work. Prior to joining Evidation, Bertina served as EVP overseeing clinical teams, product management, marketing, and product development at Zynx Health, driving development of evidence-based clinical decision support solutions that improve health and financial outcomes. Bertina received her BAS from Stanford, then completed her MD and residency in internal medicine at UC San Diego. She also holds an MPH in health services administration from UCLA. Bertina is the resident DJ at Evidation and sources the music that is played during the All-Employee Meetings. Outside of work, she enjoys hiking, traveling, and watching anything with a live audience (sporting events, plays, movies). She also starts every morning by completing at least one crossword puzzle! Connect with Bertina [here](/content/resources/epilepsy-treatment-use-and-need-for-support-services#/index.html) [Subscribe to our business newsletter](/content/for-customers/newsletter-sign-up/index.html) [Back](/content/resources/epilepsy-treatment-use-and-need-for-support-services#/index.html) [Share on Facebook](https://www.facebook.com/sharer/sharer.php?u=&t= "Share on Facebook") [Tweet](https://twitter.com/intent/tweet? "Tweet") [Share on LinkedIn](http://www.linkedin.com/shareArticle?mini=true&url=&title=&summary=&source= "Share on LinkedIn") Case Studies # A deeper understanding of epilepsy treatment use and need for support services ## Patient insights help transform lives ## Evidation Patient Insights connects you to the right-fit community Analyses were performed on data from the entire cohort and from the following segments to explore differences in burden and experience by: The process took less than six months to complete: ## Rapid engagement delivered the insights Jazz Pharmaceuticals needed ### Key insights ### 83% of study participants had wearable activity data from the past year ## Caregiver perspectives highlight opportunities to improve the epilepsy treatment paradigm ‍ **The project outcomes are also available via the:** [American Epilepsy Society (AES) 2024 Annual Meeting](https://aesnet.org/AES-annual-meeting) [32nd Annual Education Conference held by the Developmental Disabilities Nurses Association (DDNA)](https://ddna.org/conference/) # Related work # Have questions? 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"Tweet") [Share on LinkedIn](http://www.linkedin.com/shareArticle?mini=true&url=&title=&summary=&source= "Share on LinkedIn") Case Studies # A deeper understanding of epilepsy treatment use and need for support services ## Patient insights help transform lives ## Evidation Patient Insights connects you to the right-fit community Analyses were performed on data from the entire cohort and from the following segments to explore differences in burden and experience by: The process took less than six months to complete: ## Rapid engagement delivered the insights Jazz Pharmaceuticals needed ### Key insights ### 83% of study participants had wearable activity data from the past year ## Caregiver perspectives highlight opportunities to improve the epilepsy treatment paradigm ‍ **The project outcomes are also available via the:** [American Epilepsy Society (AES) 2024 Annual Meeting](https://aesnet.org/AES-annual-meeting) [32nd Annual Education Conference held by the Developmental Disabilities Nurses Association (DDNA)](https://ddna.org/conference/) # Related work # Have questions? 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"Tweet") [Share on LinkedIn](http://www.linkedin.com/shareArticle?mini=true&url=&title=&summary=&source= "Share on LinkedIn") # A deeper understanding of epilepsy treatment use and need for support services October 1, 2024 Case Studies [Download](/content/resources/epilepsy-treatment-use-and-need-for-support-services#/index.html) ## Patient insights help transform lives ## Evidation Patient Insights connects you to the right-fit community Analyses were performed on data from the entire cohort and from the following segments to explore differences in burden and experience by: The process took less than six months to complete: ## Rapid engagement delivered the insights Jazz Pharmaceuticals needed ### Key insights ### 83% of study participants had wearable activity data from the past year ## Caregiver perspectives highlight opportunities to improve the epilepsy treatment paradigm ‍ **The project outcomes are also available via the:** [American Epilepsy Society (AES) 2024 Annual Meeting](https://aesnet.org/AES-annual-meeting) [32nd Annual Education Conference held by the Developmental Disabilities Nurses Association (DDNA)](https://ddna.org/conference/) ## Related Therapeutic Areas: No related Therapeutic areas found. 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