Authors :
Presenting Author: Rebecca O'Dwyer, MD – Rush University Medical Center
Naoki Akamatsu, MD, PhD, FAES – International University of Health and Welfare
Birnbaum Angela, PhD – University of Minnesota
Cinzia Costa, MD – University of Perugia.
Benjamin Cretin, MD – University of Strasbourg
Jacopo DiFrancesco, MD – Fondazione IRCCS San Gerardo Dei Tintori
R. Edward Faught, MD – Emory University
Guenter Kraemer, MD – Bellevue Neurocenter
Patrick Kwan, MD PhD – Monash University
Ilo Leppik, MD – University of Minnsota Medical Center
Rohit Marawar, MD – Wayne State University
Katerina Tanya Perez-Gosiengfiao, MD – University of the Philippines-Philippine General Hospital
Loretta Piccenna, PhD – Monash University
Vineet Punia, MD – Cleveland Clinic
Arjune Sen, MD – Oxford Univeristy
Salini Sumangala, MD – University Hospitals Birmingham NHS trust
Emma Foster, PhD FRACP – Monash University
Rationale:
Strong evidence suggests that the incidence of seizures and epilepsy dramatically increases among older people. There is, however, little original research currently available that focuses specifically on this older cohort, an oft cited reason being that the number of older patients in a single center is too small to draw any meaningful conclusions. We propose an international collaboration of multiple centers can increase the size of studied cohorts, allowing for meaningful original research.
Methods:
Using video-conferencing technology, discussions were conducted amongst members from centers of the International Consortium of Clinics for Elderly with Epilepsy (ICCEE) from March - August 2024. A survey using REDCap was created to collect 37 agreed upon clinical variables that are routinely collected during outpatient visits in patients aged 55 years and older. The survey was deployed in August 2024 and results collated.
Results:
Fourteen tertiary care centers across four continents responded, six from Europe, five from North America, two from Asia and one from Australia. Basic demographic and clinical data were collected by all members, including age, gender, etiology of epilepsy, current antiseizure medication(/s), EEG and neuroimaging data. Greatest variability occurred around data that are perceived to be more pertinent to older patients, including cognitive evaluation (9/14), family history of dementia (8/14), and depression screen, Dexa scan results, number of falls in last year (7/14). The least frequently collected variables were quality of life measures (5/14), autoimmune/paraneoplastic antibody profiles (4/14) and Charlson Morbidity Index (2/14). Frailty measures were not collected. Seventy-five percent of centers that screen for anxiety use the GAD-7 tool, while over half of those who screen for depression (n=4) use the NDDI-E tool. There was no concordance in deployed quality of life or cognition measures.
Conclusions:
This survey demonstrates the potential feasibility of conducting studies across ICCEE centers. Future directions will include a retrospective audit of commonly collected data points; and the harmonization of data points for future prospective studies. A standardized minimum data set of prospectively collected data points for older adults with new-onset epilepsy will form the foundation for future observational and randomized controlled trials, thus propelling much needed original research in older individuals with epilepsy to improve clinical care and outcomes.
Funding: None