A SURVEY DESIGNED TO MOVE BEYOND SEIZURE FREQUENCY
E+A Survey
The E+A Survey, launched on March 10th in collaboration with EpiCARE, is a key initiative designed to quantify the true burden of Complex and Rare Epilepsies and move beyond seizure‑focused metrics to capture the full lived experience of patients and caregivers.
Approved by:
- Research Ethics Committee (EC Research) of UZ/KU Leuven (reference: S71638)
- Research Ethics Committee of the Foundation for the Promotion of Health and Biomedical Research of the Valencian Community (Public Health Research Ethics Committee and External Ethics Committee of the IBSP-CV Biobank and the Valencian Biobank Network) (reference: 20260226/09/P)
The Epilepsy Plus Alliance ‑ E+A and the patient and caregiver survey, was funded by financial contributions from Jazz Pharmaceuticals, Lundbeck, UCB and Biocodex, who had no editorial input, as well as by membership fees contributed by E+A member organisations.
The survey explores four critical domains:
1. Daily challenges
Explores the practical and emotional challenges that patients and families face in everyday life, highlighting the impact of rare and complex epilepsies beyond seizures alone.
2. Caregiver needs
Captures the experiences, responsibilities, and support needs of caregivers, recognizing the significant personal, emotional, and practical burden of providing ongoing care.
3. Quality of life
Assesses how rare and complex epilepsies affect overall well-being, including physical, emotional, social, and personal dimensions of life for patients and their families and caregivers.
4. Access to care
Examines patients’ and caregivers’ experiences in accessing appropriate, timely, and coordinated healthcare, including the barriers that may prevent them from receiving the care and support they need.
Contact us
For enquiries, support, or collaboration opportunities, please do not hesitate to get in touch. Our team is committed to providing timely and helpful responses to all your questions and requests.
info@epilepsyplus.org