National audit of pathways in epileptic seizure referrals (NAPIER): A national, multicentre audit of first seizure clinics throughout the UK and Ireland

•First seizure patients face delays to assessment with epilepsy specialists.•A sizeable proportion awaiting first appointment experience seizure recurrence.•There is variability in the documented care of suspected first seizure patients.•National variability suggests underlying systematic and organi...

Full description

Saved in:
Bibliographic Details
Published in:Seizure (London, England) England), 2023-10, Vol.111, p.165-171
Main Authors: Lee, Seong Hoon, Gillespie, Conor, Bandyopadhyay, Soham, Nazari, Armin, Ooi, Setthasorn Zhi Yang, Park, Jay J., Champ, Claire, Taylor, Claire, Kinney, Michael, Mackay, Graham, Myint, Phyo Kyaw, Marson, Anthony, Anand, Ajitesh, Abraham, Alena, Irving, Alex, Prabhakar, Amogh, Ciuculete, Catinca, Zheng, Cindy, King, Daniel, Browne, Declan, Barua, Dipesh Kumar, Duklas, Dorota, Mirza, Farhat, Olaifa, Fumilola, Daler, Harmani, Naveed, Hassan, Elzeky, Heba, Emsley, Hedley, Zhu, Honglin, Morrison, Ian, Syed, Irtiza, Summers, Isabel, Wellington, Jack, Wall, Jasmine, O'Dwyer, John, Ford, Jordan, Sivaganesh, Karthikeyan, Lassak, Katja, Jamison, Keara, Hamandi, Khalid, Parvi, Kourosh, McMenemy, Lareyna, McColm, Lewis, Aleknaite, Lina, Srikantha, Maithili, Kaladjiska, Maja, Jasim, Marie, McCarron, Mark, Mockova, Martina, Marar, Mohammad, Adab, Naghme, Ahmed, Najma, Potter, Nye Rhys, Tharmapoopathy, Pavithira, Dixit, Prithvi, Mohanraj, Rajiv, Baskaran, Ravanth, Davenport, Richard, Seah, Robert, Bhate, Rohan, Gupta, Rohan, Shams, Sahar, Kannan, Siddarth, Majeed, Tahir, Counihan, Timothy, Ferriera, Tomas, Cheng, Yihui, Shamshi, Zaib
Format: Article
Language:English
Subjects:
Epilepsy
First seizure
First seizure clinic
Seizure
Seizure mimic
Citations: Items that this one cites
Online Access:Get full text
Tags: Add Tag
No Tags, Be the first to tag this record!
Description
Summary:•First seizure patients face delays to assessment with epilepsy specialists.•A sizeable proportion awaiting first appointment experience seizure recurrence.•There is variability in the documented care of suspected first seizure patients.•National variability suggests underlying systematic and organisational barriers. Current guidelines set clinical standards for the management of suspected first seizures and epilepsy. We aimed to assess if these standards are being met across first seizure clinics nationally, to describe variations in care and identify opportunities for service delivery improvement. Multicentre audit assessing the care of adults (≥16 years) referred to first seizure clinics from 31st December 2019 going backwards (30 consecutive patients per centre). Patients with pre-existing diagnosis of epilepsy were excluded. Anonymised referral, clinic, and follow-up data are reported with descriptive statistics. Data provided for 727 patients from 25 hospitals in the UK and Ireland (median age 41 years [IQR 26–59], 52% males). Median time to review was 48 days (IQR 26–86), with 13.8% (IQR 3.3%–24.0%) of patients assessed within 2 weeks. Seizure recurrence was seen in 12.7% (IQR 6.6%–17.4%) of patients awaiting first appointment. Documentation for witness accounts and driving advice was evident in 85.0% (IQR 74.0%–100%) and 79.7% (IQR 71.2%–96.4%) of first seizure/epilepsy patients, respectively. At first appointment, discussion of sudden unexpected death in epilepsy was documented in 30.1% (IQR 0%–42.5%) of patients diagnosed with epilepsy. In epilepsy patients, median time to MRI neuroimaging was 37 days [IQR 22–56] and EEG was 30 days [IQR 19–47]. 30.4% ([IQR 0%–59.5%]) of epilepsy patients were referred to epilepsy nurse specialists. There is variability nationally in the documented care of patients referred to first seizure clinics. Many patients are facing delays to assessment with epilepsy specialists with likely subsequent impact on further management.
ISSN:1059-1311
1532-2688
DOI:10.1016/j.seizure.2023.08.010