Epilepsy12
Clinical Performance Indicators and Regional Service Development
K Martin1, C Dunkley2,3, R Sunley1, S Gough4, M Anderson5, R Wheway5, C Ferrie3,6, WP Whitehouse.1,3,7
Aims Conclusions
“12 clinical measures over 12 months” The target populations were difficult to ascertain and community-based service
To develop and pilot practical clinical audit tools which could provide meaningful, standardised and cohorts were not able to ascertained. The Children’s Epilepsy Workstream in
nationally applicable measures of quality of services for children with suspected epilepsies based on Trent (CEWT) responded to issues raised:
recommendations from the National Institute for Clinical Excellence (NICE) and the Scottish
Intercollegiate Guidelines Network (SIGN)
Method
Children presenting to services in Trent UK; acutely or non-acutely; with paroxysmal event(s) in whom
an epileptic basis was initially suspected; assessed for the first time by a paediatric service within a
defined time period (2004-2005) were ascertained. A retrospective casenote based audit tool Low evidence of Promotion of role of paediatrician
alongside service descriptors was applied to the ascertained cohorts for the time period of 12 months appropriate with expertise and specialist
after first presentation. The cohort was subdivided into diagnoses at presentation and at 12 months. professional epilepsy nurse. Variations between
These acted as denominators for 12 clinical performance indicators based on national involvement providers highlighted as a prompt
recommendations.
to develop appropriate cases of
All Cohort 1 Cohort 2 Cohort 3 Cohort 4 need.
Ascertainment/methodology
1/09/05-
Date of first assessment 2004-2005 21/4/04-30/6/04 21/4/04-30/6/04 26/4/04-5/7/04
10/11/05
Tertiary
Population-based, service-based District General District General District General
Hospital
% general paediatricians in audit for area covered 58% (31/53) 71% (5/7) 83% (5/6) 48% (11/23) 59% (10/17)
Low evidence of Development and promotion of
Coding Coding Coding
Ascertainment method database database & database Keyword appropriate clinical epilepsies training. Development
& keyword keyword & GP letter
assessment and of funding streams to support
afebrile afebrile afebrile afebrile afebrile
Inclusion criteria
seizures seizures seizures seizures seizures syndromal attendance.
No. identified 236 37 16 145 38 classification
notes unavailable 11 0 0 9 2
excluded on entry criteria 160 19 8 122 11
N= 65 18 8 14 25
Demographics Guideline framework and regional
Median age in years (range) 6.5 (0 -16.9) 6.7 (0.4 -14.5) 8.5 (3-12) 2.9 (0-14.9) 8.1(0.1-16.9)
12 lead ECG afebrile seizure guideline
Female: Male (%) 48:52 67:33 38:63 21:79 64:36 developed. Indications for 12 lead
Learning difficulty (%) 7% 6% 13% 0% 8% ECG highlighted.
First assessment, outpatient: acute (%) 56:44 89:11 25:75 14:86 96:4
Spectrum of disease/diagnoses within cohort
% epileptic seizure(s) 1st assessment (no.) 45% (29) 50% (9) 63% (5) 64% (9) 24% (6)
% non epileptic seizures 1st assessment (no.) 32% (21) 22% (4) 0% (0) 21% (3) 56% (14)
Patient drug information sheets
% uncertain 1st assessment (no.) 23% (15) 28% (5) 38% (3) 14% (2) 20% (5)
% diagnosed as >1 epileptic seizures at 1 year Low evidence of formatted for regional use and
34% (22) 39% (7) 75% (6) 21% (3) 24% (6)
(no.)
communication of made available from CEWT
% diagnosed as single epileptic seizures at 1 (no.) 15% (10) 17% (3) 0% (0) 36% (5) 8% (2)
drug adverse effects website (www.cewt.org.uk)
% commenced AEDs by 1 year (no.) 18% (12) 28% (5) 25% (2) 14% (2) 12% (3) alongside other clinically useful
% diagnosed as non epileptic seizures at 1 year
40% (26) 28% (5) 13% (1) 29% (4) 64% (16)
resources.
(no.)
% diagnosed as uncertain at 1 year (no.) 11% (7) 17% (3) 13% (1) 14% (2) 4% (1)
Epilepsy 12 Performance Indicators
Seen by Paediatrician with expertise* 54% (12/22) 43% (3/7) 67% (4/6) 33% (1/3) 67% (4/6)
Contact with Specialist epilepsy nurse 23% (5/22) 0% (0/7) 0% (0/6) 0% (0/3) 83% (5/6)
Appropriate First Clinical Assessment 46% (30/65) 44% (8/18) 25% (2/8) 50% (7/14) 52% (13/25) Promotion of ‘satellite’ tertiary
AEDs only for epilepsy 100% (12/12) 100% (5/5) 100% (2/2) 100% (2/2) 100% (3/3)
Neurology referral neurology clinics as a means to
Epileptic Seizures classified 81% (26/32) 90% (9/10) 83% (5/6) 63% (5/8) 88% (7/8) facilitate appropriate referrals,
Epilepsy Syndrome classified 50% (11/22) 71% (5/7) 33% (2/6) 0% (0/3) 67% (4/6)
shared care and peer review.
Absence inappropriate EEG 90% (19/21) 100% (4/4) n/a (0/0) 100% (3/3) 86% (12/14)
MRI where appropriate 71% (5/7) 67% (2/3) 100% (1/1) 50% (1/2) 100% (1/1)
ECG where appropriate 23% (3/13) 40% (2/5) 0% (0/1) 50% (1/2) 0% (0/5)
Discussion Pregnancy and AEDs 0% (0/1) 0% (0/1) n/a (0/0) n/a (0/0) n/a (0/0)
Discussion of adverse effects and AEDs 25% (3/12) 0% (0/5) 50% (1/2) 50% (1/2) 33% (1/3)
Neurology referral where appropriate 100% (2/2) 100% (2/2) n/a (0/0) n/a (0/0) n/a (0/0)
Summary of service provision (during audit period)
Retrospective casenote analysis has a number of methodological limitations
Trent
Managed clinical network but can be used as a practical means of measuring quality. Meaningful
Workstream
Epilepsy interest group Regional performance indicators can be determined and act as broad ‘feedback’ for local
Young
services as a prompt for service development. Longitudinal data to
Tertiary Seizure Clinic, demonstrate change over time as evidence of implementation of national
Types of designated clinics available to cohort. Persons,
Satellite Transition
Transition guidance and evolution of appropriate epilepsy services will be obtained by
Epilepsy patients identifiable by service acute/outpatient acute acute/outpatient acute/outpatient reaudit.
Estimated Prevalence Children with epilepsy: SEN
2034:3 279:0 609:0 602:2 544:1
ratio Epilepsy12 can be coordinated on a regional basis and is proposed as a
Waiting times practical tool to inform evolving service providers, regional epilepsy networks,
Median waiting time for first outpatient
5.9 (0-15.4) 1.2 (0-10.7) 9.0 (8-10) 4.1 (0-15.4) 6.4 (4.5-10.1)
commissioning groups and other stakeholders.
assessment (weeks) (range)
Median waiting time for EEG (weeks) (25th-75th 21.4 (17.4- A collaborative proposal for the inclusion of an audit based on Epilepsy12
5.4 (3.9-8.6) 5.4 (5-6.1) 0.3 (0-2.6) 4.3 (2.9-5.9)
centile) 24.7)
within the National Clinical Audit and Patients’ Outcomes Programme (UK) has
Median waiting time for MRI (weeks) (25th-75th 14.1 (14.1- 22.9 (22.9-
centile)
0.3 (0-30.6) 0 (0-0.29)
14.1)
0 (0-11.6)
22.9)
been successful. Funding and support have been made available to develop a
national audit project.
Median waiting time for outpatient tertiary opinion
14.0 (11-16.9) 14.0 (11-16.9) n/a n/a n/a
(weeks) (25th-75th centile)
*Defined as consultant declaring interest or expertise
1Nottingham University Hospitals NHS Trust, 2King’s Mill Hospital, Sutton in Ashfield, 3British Paediatric Neurology
Association Governance and Audit Group, 4United Lincolnshire Hospitals NHS Trust, 5Derby Childrens’ Hospital, 6Dept.
Paediatric Neurology, Leeds General Infirmary, 7School of Human Development, University of Nottingham.