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

Seong Hoon Lee; Conor Gillespie; Soham Bandyopadhyay; Armin Nazari; Setthasorn Zhi Yang Ooi; Jay Jaemin Park; Claire Champ; Claire Taylor; Michael Kinney; Graham Mackay; Phyo Kyaw Myint; Anthony Marson; NANSIG Collaborative

doi:10.1016/j.seizure.2023.08.010

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

Seong Hoon Lee^* (Corresponding Author), Conor Gillespie, Soham Bandyopadhyay, Armin Nazari, Setthasorn Zhi Yang Ooi, Jay Jaemin Park, Claire Champ, Claire Taylor, Michael Kinney, Graham Mackay, Phyo Kyaw Myint, Anthony Marson, NANSIG Collaborative

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

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Abstract

Background
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.

Methods
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.

Results
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. Among 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.

Conclusions
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.

Original language	English
Pages (from-to)	165-171
Number of pages	7
Journal	Seizure
Volume	111
Early online date	26 Aug 2023
DOIs	https://doi.org/10.1016/j.seizure.2023.08.010
Publication status	Published - 1 Oct 2023

Bibliographical note

Acknowledgements
We would like to thank the following collaborators of the NANSIG Collaborative, who conducted local data collection and analysis:

Ajitesh Anand, Alena Abraham, Alex Irving, Amogh Prabhakar, Catinca Ciuculete, Cindy Zheng, Daniel King, Declan Browne, Dipesh Kumar Barua, Dorota Duklas, Farhat Mirza, Fumilola Olaifa, Harmani Daler, Hassan Naveed, Heba Elzeky, Hedley Emsley, Honglin Zhu, Ian Morrison, Irtiza Syed, Isabel Summers, Jack Wellington, Jasmine Wall, John O'Dwyer, Jordan Ford, Karthikeyan Sivaganesh, Katja Lassak, Keara Jamison, Khalid Hamandi, Kourosh Parvi, Lareyna McMenemy, Lewis McColm, Lina Aleknaite, Maithili Srikantha, Maja Kaladjiska, Marie Jasim, Mark McCarron, Martina Mockova, Mohammad Marar, Naghme Adab, Najma Ahmed, Nye Rhys Potter, Pavithira Tharmapoopathy, Prithvi Dixit, Rajiv Mohanraj, Ravanth Baskaran, Richard Davenport, Robert Seah, Rohan Bhate, Rohan Gupta, Sahar Shams, Siddarth Kannan, Tahir Majeed, Timothy Counihan, Tomas Ferriera, Yihui Cheng, Zaib Shamshi

Keywords

Epilepsy
seizure
first seizure
first seizure clinic
seizure mimic

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Cite this

Lee, S. H., Gillespie, C., Bandyopadhyay, S., Nazari, A., Ooi, S. Z. Y., Park, J. J., Champ, C., Taylor, C., Kinney, M., Mackay, G., Myint, P. K., Marson, A., & NANSIG Collaborative (2023). National audit of pathways in epileptic seizure referrals (NAPIER): a national, multicentre audit of first seizure clinics throughout the UK and Ireland. Seizure, 111, 165-171. https://doi.org/10.1016/j.seizure.2023.08.010

Lee, SH, Gillespie, C, Bandyopadhyay, S, Nazari, A, Ooi, SZY, Park, JJ, Champ, C, Taylor, C, Kinney, M, Mackay, G, Myint, PK, Marson, A & NANSIG Collaborative 2023, 'National audit of pathways in epileptic seizure referrals (NAPIER): a national, multicentre audit of first seizure clinics throughout the UK and Ireland', Seizure, vol. 111, pp. 165-171. https://doi.org/10.1016/j.seizure.2023.08.010

@article{fdf4e86d58014d4aa9a4c04bbad38e0f,

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

abstract = "BackgroundCurrent 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.MethodsMulticentre 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.ResultsData 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. Among 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.ConclusionsThere 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.",

keywords = "Epilepsy, seizure, first seizure, first seizure clinic, seizure mimic",

author = "Lee, {Seong Hoon} and Conor Gillespie and Soham Bandyopadhyay and Armin Nazari and Ooi, {Setthasorn Zhi Yang} and Park, {Jay Jaemin} and Claire Champ and Claire Taylor and Michael Kinney and Graham Mackay and Myint, {Phyo Kyaw} and Anthony Marson and {NANSIG Collaborative}",

note = "Acknowledgements We would like to thank the following collaborators of the NANSIG Collaborative, who conducted local data collection and analysis: Ajitesh Anand, Alena Abraham, Alex Irving, Amogh Prabhakar, Catinca Ciuculete, Cindy Zheng, Daniel King, Declan Browne, Dipesh Kumar Barua, Dorota Duklas, Farhat Mirza, Fumilola Olaifa, Harmani Daler, Hassan Naveed, Heba Elzeky, Hedley Emsley, Honglin Zhu, Ian Morrison, Irtiza Syed, Isabel Summers, Jack Wellington, Jasmine Wall, John O'Dwyer, Jordan Ford, Karthikeyan Sivaganesh, Katja Lassak, Keara Jamison, Khalid Hamandi, Kourosh Parvi, Lareyna McMenemy, Lewis McColm, Lina Aleknaite, Maithili Srikantha, Maja Kaladjiska, Marie Jasim, Mark McCarron, Martina Mockova, Mohammad Marar, Naghme Adab, Najma Ahmed, Nye Rhys Potter, Pavithira Tharmapoopathy, Prithvi Dixit, Rajiv Mohanraj, Ravanth Baskaran, Richard Davenport, Robert Seah, Rohan Bhate, Rohan Gupta, Sahar Shams, Siddarth Kannan, Tahir Majeed, Timothy Counihan, Tomas Ferriera, Yihui Cheng, Zaib Shamshi",

year = "2023",

month = oct,

day = "1",

doi = "10.1016/j.seizure.2023.08.010",

language = "English",

volume = "111",

pages = "165--171",

journal = "Seizure",

issn = "1059-1311",

publisher = "W.B. Saunders Ltd",

}

TY - JOUR

T1 - National audit of pathways in epileptic seizure referrals (NAPIER)

T2 - a national, multicentre audit of first seizure clinics throughout the UK and Ireland

AU - Lee, Seong Hoon

AU - Gillespie, Conor

AU - Bandyopadhyay, Soham

AU - Nazari, Armin

AU - Ooi, Setthasorn Zhi Yang

AU - Park, Jay Jaemin

AU - Champ, Claire

AU - Taylor, Claire

AU - Kinney, Michael

AU - Mackay, Graham

AU - Myint, Phyo Kyaw

AU - Marson, Anthony

AU - NANSIG Collaborative

N1 - Acknowledgements We would like to thank the following collaborators of the NANSIG Collaborative, who conducted local data collection and analysis: Ajitesh Anand, Alena Abraham, Alex Irving, Amogh Prabhakar, Catinca Ciuculete, Cindy Zheng, Daniel King, Declan Browne, Dipesh Kumar Barua, Dorota Duklas, Farhat Mirza, Fumilola Olaifa, Harmani Daler, Hassan Naveed, Heba Elzeky, Hedley Emsley, Honglin Zhu, Ian Morrison, Irtiza Syed, Isabel Summers, Jack Wellington, Jasmine Wall, John O'Dwyer, Jordan Ford, Karthikeyan Sivaganesh, Katja Lassak, Keara Jamison, Khalid Hamandi, Kourosh Parvi, Lareyna McMenemy, Lewis McColm, Lina Aleknaite, Maithili Srikantha, Maja Kaladjiska, Marie Jasim, Mark McCarron, Martina Mockova, Mohammad Marar, Naghme Adab, Najma Ahmed, Nye Rhys Potter, Pavithira Tharmapoopathy, Prithvi Dixit, Rajiv Mohanraj, Ravanth Baskaran, Richard Davenport, Robert Seah, Rohan Bhate, Rohan Gupta, Sahar Shams, Siddarth Kannan, Tahir Majeed, Timothy Counihan, Tomas Ferriera, Yihui Cheng, Zaib Shamshi

PY - 2023/10/1

Y1 - 2023/10/1

N2 - BackgroundCurrent 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.MethodsMulticentre 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.ResultsData 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. Among 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.ConclusionsThere 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.

AB - BackgroundCurrent 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.MethodsMulticentre 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.ResultsData 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. Among 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.ConclusionsThere 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.

KW - Epilepsy

KW - seizure

KW - first seizure

KW - first seizure clinic

KW - seizure mimic

U2 - 10.1016/j.seizure.2023.08.010

DO - 10.1016/j.seizure.2023.08.010

M3 - Article

C2 - 37639958

SN - 1059-1311

VL - 111

SP - 165

EP - 171

JO - Seizure

JF - Seizure

ER -

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

Abstract

Bibliographical note

Keywords

Access to Document

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Cite this