Epilepsy by liaoqinmei

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									                         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.

								
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