Evaluating the Current State of Epilepsy Care in the Province of Ontario
Abstract number :
2.371
Submission category :
13. Health Services (Delivery of Care, Access to Care, Health Care Models)
Year :
2023
Submission ID :
670
Source :
www.aesnet.org
Presentation date :
12/3/2023 12:00:00 AM
Published date :
Authors :
Presenting Author: Christine Van Winssen, MD – University of Ottawa
Andrea Andrade, MD, CSCN-EEG – Western Univerisity; Danielle Andrade, MD, FRCPC – University of Toronto; Jorge Burneo, MD, MSPH, FAAN, FAES, FRCPC – Western University and London Health Sciences Centre; Sandrine De Ribaupierre, MD, FRCSC – Western Univerisity; Elizabeth Donner, MD, FRCPC – Hospital for Sick Children, University of Toronto; Ayman Hassan, MD – Thunderbay Regional Health Sciences Center; George Ibrahim, MD, FRCSC – Hospital for Sick Children, University of Toronto; Kevin Jones, MD FRCPC – McMaster University; Lysa Boissé Lomax, MD MSc FRCPC CSCN (EEG) – Kingston Health Sciences Center and Queen’s University; Katherine Muir, MD FRCPC – University of Ottawa; Maryam Nabavi Nouri, MD, Msc, FRCPC – Western Univerisity; Nikki Porter, PhD – Epilepsy Ottawa; Rajesh Ramachandrannair, MD, FRCPC – McMaster Children’s Hospital; Paul Raymond, Chief Executive Officer – Epilepsy Ontario; Michelle Shapiro, MD, FRCPC – Hamilton Health Sciences Center; David Steven, MD, MPH, FRCSC, FACS – Western University and London Health Sciences Centre; Taufik Valiante, MD, FRCSC – University of Toronto; Sharon Whiting, MD FRCPC – University of Ottawa; Robyn Whitney, MD, FRCPC – McMaster University; Ivanna Yau, RN, MSN – Hospital for Sick Children, University of Toronto; Tadeu Fantaneanu, MDCM, CSCN (EEG), FAES, FRCPC – The Ottawa Hospital, University of Ottawa, Ottawa Research Institute
Rationale: Epilepsy affects approximately 95,000 individuals across Ontario (Ng, R., Maxwell, C. J., Yates, E. A., Nylen, K., Antflick, J., Jetté, N., & Bronskill, S. E. (2015). Brain disorders in Ontario: prevalence, incidence and costs from health administrative data. Institute for Clinical Evaluative Sciences), thirty percent of whom are medically-refractory. Challenges pertaining to epilepsy care include EMU bed pressures, surgical access and community supports. To address these challenges, all existing provincial epilepsy-related programs, resources and stakeholders have been unified into a clinical and community network, designated OPEN (Ontario Provincial Epilepsy Network). To optimize planning, access and resource allocation we sampled the current clinical, community and operational state of Ontario Epilepsy Centres and Community Epilepsy Agencies post COVID-19 pandemic.
Methods: A 44-item survey was distributed to the site leads at all eleven district (EMU and capability to perform phase I pre-surgical evaluation) and regional (performing phases I and II evaluation, as well as surgical treatment) Adult and Pediatric Epilepsy Centres across Ontario. The survey included six sections: Site Location, Human Resources, Clinic Operations, EMU Logistics, Presurgical Evaluation, and Epilepsy Surgery. Qualitative responses were collected from community epilepsy agencies post survey.
Results: Responses were recorded from all 11 sites (seven district, four regional), 13 community health agencies and Epilepsy Ontario. All centres indicated being affected by labour shortages, most notably EEG technologists, nursing staff, and epilepsy specialists (Figure 1). Community health agencies identified labour shortages in system navigators, counseling, social work and education. Sixty three percent of centers cited EMU wait times of less than three months for urgent (Figure 2) and 63% cited three to twelve months for non-urgent surgical referrals, although two centers indicated wait times as long as 12-14 months. For non-surgical referrals, 55% of centres reported wait times of 6-24 months for non-urgent referrals. The surgeries most frequently performed included VNS implantations, lobectomies and lesionectomies, sEEG, callosotomies and DBS. Wait times for sEEG ranged from 3-24 months, while 6/11 centres reported wait times of six months or less for temporal lobectomies. Only 2/11 centres offered LITT. Ten centres reported having plans for expansion (i.e., EMU bed expansion, epileptologist hiring).
Conclusions: In conclusion, there remain significant gaps in epilepsy care across Ontario. EMU bed pressures and labour shortages have been identified as particular limiting factors. Inclusion and integration of patient care pathways with community health partners are also needed. A clinical network operating under the Ontario Ministry of Health is a logical next step to allow for effective prioritization of resource distribution and ultimately improve access to epilepsy care.
Funding: The authors did not receive any financial support with respect to the research and/or authorship of this project.
Health Services (Delivery of Care, Access to Care, Health Care Models)