Association of quality of paediatric epilepsy care with mortality and unplanned hospital admissions among children and young people with epilepsy in England: a national longitudinal data linkage study
File(s)
Accepted version
Author(s)
Type
Journal Article
Abstract
Background
Concerns have been raised about variation in care quality and outcomes among children and young people with epilepsies in England. We aimed to investigate the relationship between quality of paediatric care, hospital admissions and epilepsy-related deaths (both before and after transition to adult services).
Methods
We accessed unit-level data from Round 1 (2009-11) and Round 2 (2013-14) of the Epilepsy12 national clinical audit, and data on death registrations and unplanned hospital admissions. We investigated the association between unit-level performance in involving a paediatrician with epilepsy expertise, Epilepsy Specialist Nurse (ESN), and Paediatric Neurologist (PN) in Round 1 and the proportion of adolescents with epilepsy admitted to each unit who subsequently died during the study period (2009-15). We also investigated whether change in Epilepsy12 performance between the audit rounds was associated with change in the standardised ratio of observed:expected unplanned epilepsy admissions.
Findings
79/1164(7%) of patients included in the PN analyses died; 54/1164(5%) deaths occurred post-transition. Regression models estimated an absolute reduction of 6%(95% CI 1-13%) in total mortality risk and 6%(1-11%) post-transition mortality risk between units where all versus no eligible patients were seen by a PN. In dichotomised analyses, units where all eligible patients were seen by a PN were estimated to have 5%(0-9%) absolute mortality reduction and 5%(1-8%) reduction in post transition deaths compared to other units. There was no significant association between performance on other audit measures and mortality. In units where access to an ESN deteriorated, the standardised ratio of epilepsy admissions increased by a mean of 0·21 (95% CI 0·01-0·42).
Interpretation
Among adolescents with epilepsy, greater involvement of tertiary specialists in paediatric care predicts lower mortality in the period after transition to adult services. Reduced access to an ESN was associated with an increase in paediatric epilepsy admissions.
Concerns have been raised about variation in care quality and outcomes among children and young people with epilepsies in England. We aimed to investigate the relationship between quality of paediatric care, hospital admissions and epilepsy-related deaths (both before and after transition to adult services).
Methods
We accessed unit-level data from Round 1 (2009-11) and Round 2 (2013-14) of the Epilepsy12 national clinical audit, and data on death registrations and unplanned hospital admissions. We investigated the association between unit-level performance in involving a paediatrician with epilepsy expertise, Epilepsy Specialist Nurse (ESN), and Paediatric Neurologist (PN) in Round 1 and the proportion of adolescents with epilepsy admitted to each unit who subsequently died during the study period (2009-15). We also investigated whether change in Epilepsy12 performance between the audit rounds was associated with change in the standardised ratio of observed:expected unplanned epilepsy admissions.
Findings
79/1164(7%) of patients included in the PN analyses died; 54/1164(5%) deaths occurred post-transition. Regression models estimated an absolute reduction of 6%(95% CI 1-13%) in total mortality risk and 6%(1-11%) post-transition mortality risk between units where all versus no eligible patients were seen by a PN. In dichotomised analyses, units where all eligible patients were seen by a PN were estimated to have 5%(0-9%) absolute mortality reduction and 5%(1-8%) reduction in post transition deaths compared to other units. There was no significant association between performance on other audit measures and mortality. In units where access to an ESN deteriorated, the standardised ratio of epilepsy admissions increased by a mean of 0·21 (95% CI 0·01-0·42).
Interpretation
Among adolescents with epilepsy, greater involvement of tertiary specialists in paediatric care predicts lower mortality in the period after transition to adult services. Reduced access to an ESN was associated with an increase in paediatric epilepsy admissions.
Date Issued
2019-09
Date Acceptance
2019-07-01
Citation
The Lancet Child & Adolescent Health, 2019, 3 (9), pp.627-635
ISSN
2352-4642
Publisher
Elsevier BV
Start Page
627
End Page
635
Journal / Book Title
The Lancet Child & Adolescent Health
Volume
3
Issue
9
Copyright Statement
© 2019 Elsevier Ltd. All rights reserved. This manuscript is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International Licence http://creativecommons.org/licenses/by-nc-nd/4.0/
Identifier
https://www.sciencedirect.com/science/article/pii/S2352464219302019?via%3Dihub
Subjects
Science & Technology
Life Sciences & Biomedicine
Pediatrics
HEALTH-CARE
TRANSITION
Publication Status
Published
Date Publish Online
2019-07-04