TY - JOUR
T1 - A national study of epilepsy-related deaths in Scotland
T2 - Trends, mechanisms, and avoidable deaths
AU - Mbizvo, Gashirai K.
AU - Schnier, Christian
AU - Simpson, Colin R.
AU - Chin, Richard F.M.
AU - Duncan, Susan E.
N1 - Funding Information:
This work was charitably supported by Epilepsy Research UK (R44007) and the Juliet Bergqvist Memorial Fund. The funders played no role in the design or conduct of this work. We are grateful to Saif Razvi (NHS Ayrshire and Arran), Myles Connor (NHS Borders), Ondrej Dolezal (NHS Dumfries and Galloway), Russell Hewett (NHS Greater Glasgow and Clyde), Linda Gerrie and Graham Mackay (NHS Grampian), Martin Zeidler (NHS Fife), Katy Murray (NHS Forth Valley), Kate Taylor (NHS Highland), John Paul Leach (NHS Lanarkshire), and Kathleen White and Ian Morrison (NHS Tayside) for arranging access to medical records in the respective areas for diagnostic accuracy study. We thank Dave Kelly and Albasoft for facilitating access to primary care data. We also thank NRS for assistance with mortality data. We would like to acknowledge the support of the eDRIS Team (National Services Scotland) for their involvement in obtaining approvals, provisioning and linking data, and the use of the secure analytical platform within the National Safe Haven. We are also grateful to Siddharthan Chandran, Catherine Sudlow, and William Whiteley for strategic support and advice on the project. We are grateful to Jane Andrews for administerial support in relation to this project.
Funding Information:
This work was charitably supported by Epilepsy Research UK (R44007) and the Juliet Bergqvist Memorial Fund. The funders played no role in the design or conduct of this work. We are grateful to Saif Razvi (NHS Ayrshire and Arran), Myles Connor (NHS Borders), Ondrej Dolezal (NHS Dumfries and Galloway), Russell Hewett (NHS Greater Glasgow and Clyde), Linda Gerrie and Graham Mackay (NHS Grampian), Martin Zeidler (NHS Fife), Katy Murray (NHS Forth Valley), Kate Taylor (NHS Highland), John Paul Leach (NHS Lanarkshire), and Kathleen White and Ian Morrison (NHS Tayside) for arranging access to medical records in the respective areas for diagnostic accuracy study. We thank Dave Kelly and Albasoft for facilitating access to primary care data. We also thank NRS for assistance with mortality data. We would like to acknowledge the support of the eDRIS Team (National Services Scotland) for their involvement in obtaining approvals, provisioning and linking data, and the use of the secure analytical platform within the National Safe Haven. We are also grateful to Siddharthan Chandran, Catherine Sudlow, and William Whiteley for strategic support and advice on the project. We are grateful to Jane Andrews for administerial support in relation to this project.
Publisher Copyright:
© 2021 International League Against Epilepsy
PY - 2021/9/19
Y1 - 2021/9/19
N2 - Objective: This study was undertaken to investigate the trends and mechanisms of epilepsy-related deaths in Scotland, highlighting the proportion that were potentially avoidable. Methods: This was a retrospective observational data-linkage study of administrative data from 2009–2016. We linked nationwide data encompassing mortality records, hospital admissions, outpatient attendance, antiepileptic drug (AED) prescriptions, and regional primary care attendances. Adults (aged ≥16 years) suffering epilepsy-related death were identified for study using International Classification of Diseases, 10th Revision coding combined with AED prescriptions. We reported epilepsy-related mortality rate (MR), age-specific mortality ratios, multiple cause-of-death frequencies, and the proportion of potentially avoidable deaths (identified as those with an underlying cause listed as avoidable by the Office for National Statistics). Results: A total of 1921 epilepsy-related deaths were identified across Scotland; 1185 (62%) decedents were hospitalized for seizures in the years leading up to death, yet only 518 (27%) were seen in a neurology clinic during the same period. MR remained unchanged over time, ranging from 5.9 to 8.7 per 100 000 Scottish population (95% confidence interval [CI] = −.05 to.66 per 100 000 for annual change in MR). Mortality ratios were significantly increased in young adults aged 16–54 years (2.3, 95% CI = 1.8–2.8), peaking at age 16–24 years (5.3, 95% CI = 1.8–8.8). Sudden unexpected death in epilepsy (SUDEP) constituted 30% of the 553 young adult epilepsy-related deaths, with several other non-SUDEP fatal mechanisms identified including aspiration pneumonia, cardiac arrest, AED or narcotic poisoning, drowning, and alcohol dependence. Seventy-six percent of young adult epilepsy-related deaths were potentially avoidable. Significance: Epilepsy-related deaths are a major public health problem in Scotland, given that they are not reducing, people are dying young, and many deaths are potentially avoidable. SUDEP is only one of several important mechanisms by which epilepsy-related deaths are occurring in young adults. Services may need to be re-evaluated to improve specialist referral following seizure-related hospital admissions.
AB - Objective: This study was undertaken to investigate the trends and mechanisms of epilepsy-related deaths in Scotland, highlighting the proportion that were potentially avoidable. Methods: This was a retrospective observational data-linkage study of administrative data from 2009–2016. We linked nationwide data encompassing mortality records, hospital admissions, outpatient attendance, antiepileptic drug (AED) prescriptions, and regional primary care attendances. Adults (aged ≥16 years) suffering epilepsy-related death were identified for study using International Classification of Diseases, 10th Revision coding combined with AED prescriptions. We reported epilepsy-related mortality rate (MR), age-specific mortality ratios, multiple cause-of-death frequencies, and the proportion of potentially avoidable deaths (identified as those with an underlying cause listed as avoidable by the Office for National Statistics). Results: A total of 1921 epilepsy-related deaths were identified across Scotland; 1185 (62%) decedents were hospitalized for seizures in the years leading up to death, yet only 518 (27%) were seen in a neurology clinic during the same period. MR remained unchanged over time, ranging from 5.9 to 8.7 per 100 000 Scottish population (95% confidence interval [CI] = −.05 to.66 per 100 000 for annual change in MR). Mortality ratios were significantly increased in young adults aged 16–54 years (2.3, 95% CI = 1.8–2.8), peaking at age 16–24 years (5.3, 95% CI = 1.8–8.8). Sudden unexpected death in epilepsy (SUDEP) constituted 30% of the 553 young adult epilepsy-related deaths, with several other non-SUDEP fatal mechanisms identified including aspiration pneumonia, cardiac arrest, AED or narcotic poisoning, drowning, and alcohol dependence. Seventy-six percent of young adult epilepsy-related deaths were potentially avoidable. Significance: Epilepsy-related deaths are a major public health problem in Scotland, given that they are not reducing, people are dying young, and many deaths are potentially avoidable. SUDEP is only one of several important mechanisms by which epilepsy-related deaths are occurring in young adults. Services may need to be re-evaluated to improve specialist referral following seizure-related hospital admissions.
KW - cause of death
KW - death certificates
KW - mortality
KW - routine data
KW - terminal illness
UR - https://www.scopus.com/pages/publications/85115045913
U2 - 10.1111/epi.17065
DO - 10.1111/epi.17065
M3 - Article
C2 - 34537957
AN - SCOPUS:85115045913
SN - 0013-9580
VL - 62
SP - 2667
EP - 2684
JO - Epilepsia
JF - Epilepsia
IS - 11
ER -