Variation in access to specialist services for neurosurgical procedures in adults with epilepsy in England, a cohort study

• Published in: Seizure (London, England) England), 2024-03, Vol.116, p.140-146
• Main Authors: Murphy, Joanna, Hall, Gillian C, Barion, Francesca, Danielson, Vanessa, Dibué, Maxine, Wallace, Jordan, Alexander, Myriam, Beecroft, Sue, Sen, Arjune
• Format: Article
• Language: English
• Subjects: Epilepsy; Learning disability; Specialist service; Surgery; Vagus nerve stimulation
• ISSN: 1059-1311; 1532-2688
• DOI: 10.1016/j.seizure.2022.12.006

•Despite NICE guidance, visits to neurosurgery clinics remain uncommon and are seldom followed by surgical interventions.•Access to tertiary centres and neurosurgical procedures in adults with epilepsy in England, varies by region and CCGs.•Access to neurosurgical procedures is delayed, particularly if a person’s initial visit is not at a tertiary epilepsy centre.•VNS use remains low, although it is higher in people with learning disability, who are less likely to have resective surgery. To understand if primary consultation at tertiary epilepsy centres (TEC) in England impacts access to neurosurgical procedures (resective surgery, vagus nerve stimulator [VNS], deep brain stimulator [DBS]). Adults with epilepsy, and with a first neurology outpatient visit (index) between 01/01/2013 and 31/12/2015, were followed using English Hospital Episode Statistics from index date to 31/12/2019. Analyses were stratified by geographic location, learning disability record, and whether the index or follow-up visits were at a TEC. 84,093 people were included, with mean 5.5 years of follow-up. 12.4% of the cohort had learning disability (range 10.1%-17.4% across regions). TEC consultations varied by National Health Service regions and Clinical Commissioning Groups. 37.5% of people (11.2%-75.0% across regions) had their index visit at a TEC; and, of those not initially seen at a TEC, 10.6% (6.5%-17.7%) subsequently attended a tertiary centre. During follow-up, 11.1% people (9.5%-13.2%) visited a neurosurgery department, and 2.3% of those (0.9%-5.0%) then underwent a neurosurgical procedure, mainly VNS implantation. Median time from index date to first visit at a neurosurgery centre was 7 months (range 6-8 months across regions) and 40 months to procedure (36.5-49 months, 37.0 months in people with index visit at a TEC and 49.0 months otherwise). People with learning disability were less likely to have resective surgery (