Site location

Responses were recorded from all 11 sites (7 district, 4 regional). Ten centres reported plans for expansion of services, including EEG technologist hiring (55%), epilepsy specialist hiring (45%), registered nurse hiring (36%), EMU bed expansion (27%) and offering epilepsy surgery (27%).

Human resources

Centres reported a range of 1–11 epilepsy specialists (median = 3), 0–3 epilepsy neurosurgeons (median = 1, nearly all working in regional surgical centres), and 2–11 EEG technologists (median = 6, all of whom participate in all EEG laboratory services including EMU, ambulatory, routine and continuous EEGs). Forty-five percent of centres indicated having separate staff to act as EMU coordinators. Sixty-four percent of centres have epilepsy fellows, of which 71% reported having 1–2 fellows and 2 centres reported having more than 3 fellows. All centres indicated being affected by labour shortages, most notably EEG technologists, nursing staff and epilepsy specialists.

Clinic operations

Thirty-six percent of centres reported having 0 clinic nurses, whereas no centres reported having greater than 3 nurses. Forty-five percent indicated having a nurse practitioner as a part of their epilepsy group or clinical staff. A further 45% cited wait times of 1–3 months for clinic referrals triaged as urgent, and 73% cited 6–12 months for non-urgent referrals, with 1 centre reporting wait times of greater than 24 months. VNS programming was reported to be available at 91% of centres, although only 27% offer DBS programming. A Ketogenic Diet Program is available at 73% of centres. Seventy-three percent of centres indicated having an adolescent transition programme, however, the minimum wait time cited was 3–6 months (45%), with one centre citing wait times of greater than 24 months for adolescents waiting to see an adult specialist. Additional subspecialty clinics are offered at certain centres include first seizure clinics (55%), epilepsy genetics clinics (36%), tuberous sclerosis complex clinics (27%) and women’s health clinics (18%).

EMU logistics

Fifty percent of centres cited EMU wait times of 1–3 months for urgent surgical and 50% cited 6–24 months for non-urgent surgical referrals. For non-surgical referrals, 50% of centres reported wait times of 6–24 months for non-urgent referrals. The number of total EMU beds ranged from 0 to 11 (0–10 operational), with 64% of centres citing between 2 and 4 discharges per week. Thirty-six percent of centres indicated their EMU is not open on weekends, and only 3 centres indicated EMU beds are reliably protected during surge times.

Pre-surgical evaluation

If not otherwise limited by various constraints, 10 centres indicated having the infrastructure to perform additional pre-surgical tests beyond what is currently offered, including 1.5T MRI, fMRI, PET and SPECT.

Epilepsy surgery

The surgeries most frequently performed included VNS implantations, lobectomies and lesionectomies, sEEG, callosotomies and DBS. Wait times for sEEG ranged from less than 3–24 months, while 6/11 (55%) of centres reported wait times of 6 months or less for temporal lobe resection. Wait times for VNS implantation, DBS and callosotomy varied across centres, ranging from less than 3 months–12 months for VNS/DBS and 24 months for callosotomy. Only 2/11 (18%) of centres offered laser interstitial thermal therapy. The wait time from EMU data capture to surgical conference presentation was less than 3 months at 63% of centres, and whereas district centres reported variable wait times for conferences outside their own centre, ranging from less than 3 to greater than 24 months.

Community agencies

Responses were recorded from 13 community health agencies and Epilepsy Ontario. Epilepsy Ontario reported a need for additional system navigators, and community health agencies identified need for counsellors, social workers and educators.

Overall, the results of our survey reveal ongoing gaps in epilepsy care across Ontario post COVID-19 pandemic, particularly pertaining to access and delivery of care for patients with medically-refractory epilepsy. Limiting factors include EMU bed pressures and labour shortages, identified globally, including epileptologists, though the median of 3 specialists per centre is in line with previous studies from the U.S. ^{Reference Ostendorf, Ahrens and Lado7} Although significant variability exists across centres, wait times for surgical admissions are quite variable, anywhere between 3 and 24 months, although no standardised definition of “urgent” was used by responding centres. Another limitation was possible response bias as the waiting times were derived from respondents’ knowledge of their institutional workflows and the responses provided may have been perceived as “more acceptable” than the “real world” waiting times. Further, the majority of centres indicated EMU beds are not protected during surge times. Labour shortages are a pervasive issue across all epilepsy centres and community agencies, with shortages of EEG technologists, nursing staff and epileptologists being the most frequently cited. Inclusion and integration of patient care pathways with community health partners are also needed.

A 2015 survey of Canadian neurologists reported an average wait time for epilepsy surgical evaluation of 8.6 months, with the longest wait times reported in Saskatchewan (14.2 months) and British Columbia (10.2 months), and the shortest wait times reported in Quebec (5.9 months) and Alberta (7.9 months). ^{Reference Roberts, Hrazdil and Wiebe8} A further pre-COVID study from Saskatchewan revealed time from initial epilepsy consult to video EEG was 7 months, and time from consultation to surgery was 17 months. ^{Reference Mahabadi, Fehr, Wu, Hernandez-Ronquillo, Rizvi and Tellez-Zenteno9} In Ontario, a 2012 report indicated EMU wait times to be an average of 180 days and 262 days at two respective regional epilepsy centres. ⁶ Unfortunately, no guideline or benchmark on acceptable waiting time exists currently. There is no Canadian data regarding pre-surgical evaluation wait times post-pandemic. Our results suggest that current Ontario wait times remain prolonged, although may be minimally shorter than these pre-pandemic Canadian reports, particularly for surgical cases triaged as urgent. This is likely related to reduced surgical caseloads. There is evidence that reduced surgical wait times are associated with improved seizure control post-operatively, ^{Reference Lewis, Taylor, Carney and Harding10} suggesting that improving surgical access and availability would be an important priority for the province.

Clinical networks integrate clinicians and consumers to identify and address systems-based healthcare problems in order to improve delivery of care. OPEN has been established based on operating models of existing clinical networks within and outside of Ontario, including but not limited to agencies operating under Ontario Health such as Cancer Care Ontario and Critical Care Services Ontario, as well as various strategic clinical networks operating under Alberta Health Services.

A priority of OPEN includes evaluating wait times and capacity across Ontario Epilepsy networks, as well as collecting bottom-up priorities from stakeholders. Our survey has identified areas of need from all provincial epilepsy centres and community agencies. A clinical network serving in an advisory capacity to the Ministry of Health will serve as a logical next step to allow for effective prioritisation of resource distribution and ultimately improve access to epilepsy care.