Abstract Details

Title Caregiver-Reported Real-world Use of Cannabidiol (CBD) and Effects on Seizures and Caregiver Burden: Results From the CARE-EpiC Survey

Topic Epilepsy/Clinical Neurophysiology (EEG)

Presentation(s) P1 - Poster Session 1 (11:45 AM-12:45 PM)

Poster/Presentation
Number 9-003

Objective The Caregiver Analysis of Real-world Epidiolex^® in Epilepsy Context (CARE-EpiC) study was conducted to understand real-world implications of CBD treatment from the caregiver’s perspective.

Background

Epidiolex^®, a plant-derived highly purified pharmaceutical formulation of CBD, is approved for treatment of seizures associated with Lennox-Gastaut syndrome (LGS), Dravet syndrome (DS), and tuberous sclerosis complex (TSC); non-seizure benefits of CBD have also been reported.

Design/Methods

Caregivers (aged ≥18 years) of dependents taking CBD (Epidiolex^®; 100 mg/mL oral solution for treatment of seizures) completed a cross-sectional survey. Caregiver burden was measured using the Burden Scale for Family Caregivers (BSFC; maximum score, 30; higher scores=greater burden). Outcomes were evaluated overall and for subgroups: race/ethnic communities (underrepresented/non-underrepresented), sex (female/male), and caregiver responsibility (shared/sole).

Results Overall, 204 caregivers completed the survey. Mean (SD) age of caregivers was 38 years (11); 38% were from underrepresented communities, 54% were female, and 78% shared caregiver responsibilities. Most dependents were adults (56%), had co-occurring conditions, and were taking concomitant medications for seizures (86%). LGS, DS, or TSC was diagnosed in 52% of dependents; 45% were experiencing <1 seizure/week. Mean (SD) overall BSFC score was 14.1 (6.8); higher scores for caregivers from underrepresented and male subgroups. Overall, caregivers reported emotional and behavioral care activities as most burdensome (81%), and daily care activities had greater negative impact on underrepresented caregivers (83%). Seizure frequency reduction was the most common reason for starting CBD (46%). Most caregivers reported reduction in average seizure duration (64%) and improvements in dependent’s condition (78%) and their own experience (78%) after CBD initiation.

Conclusions

CBD initiation was associated with positive changes not only in dependents’ well-being but also in caregiver experiences. Results showed that in caring for their dependents’ physical, emotional, and behavioral needs, caregivers may require additional support that might not be captured in traditional burden of illness and cost-effectiveness analyses.

Authors/Disclosures
Michael Faithe, PharmD PRESENTER	Dr. Faithe has received personal compensation for serving as an employee of Jazz Pharmaceuticals. Dr. Faithe has stock in Jazz Pharmaceuticals. Dr. Faithe has stock in Amgen .
Sheila Thomas	Sheila Thomas has received personal compensation for serving as an employee of Jazz Pharmaceuticals. Sheila Thomas has stock in Jazz Pharmaceuticals.
James McAuley, PhD	Dr. McAuley has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Jazz Pharmaceuticals.
Christopher A. Jones, PhD	Dr. Jones has received personal compensation in the range of $100,000-$499,999 for serving as a Managing Partner Alternative Investments with UVM Health Network.
Elisabeth Kipping, MPH	Ms. Kipping has received personal compensation for serving as an employee of Evidation.
Kristen Rosen, PhD	Dr. Rosen has received personal compensation for serving as an employee of Evidation Health.

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