audit of the nice quality standards for the epilepsies in children and young people holly evans,...
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Audit of the NICE Quality standards for the epilepsies in
children and young people
Holly Evans, Radia Fahami, Nickolas TilburyRachael Wheway
Hani Faza
Published Feb 2013 9 standards Define clinical best practice Provide specific quality statements and
measures with definition of high-quality care Cover diagnosis and Mx of epilepsy Endorsed by RCPCH, RCGP, ABN, Epilepsy
Action and Epilepsy Society
NICE Quality Standards for the Epilepsies
1. Children and young people presenting with a suspected seizure are seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation
2. Children and young people having initial investigations for epilepsy undergo the tests within 4 weeks of them being requested
3. Children and young people who meet the criteria for neuroimaging for epilepsy have MR imaging (57%)
4. Children and young people with epilepsy have an agreed and comprehensive written epilepsy care plan
NICE Quality Standards for the Epilepsies
5. Children and young people with epilepsy are seen by epilepsy specialist nurse who they can contact between scheduled reviews
6. Children and young people with a history of prolonged or repeated seizures have an agreed written emergency care plan.
7. Children and young people who meet the criteria for referral to a tertiary care specialist are seen within 4 weeks of referral
NICE Quality Standards for the Epilepsies
8. Children with epilepsy have a structured review with a paediatric epilepsy specialist at least annually (89%)
9. Young people with epilepsy have an agreed transition period during which their continuing epilepsy care is reviewed jointly by paediatric and adult services
NICE Quality Standards for the Epilepsies
Audit of 6 quality standards out of 9
2 out 9 standards: part of Epilepsy 12 audit (round 2)
1 out of 9: to be audited in the future
AUDIT
Children and young people presenting with a suspected seizure are seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation Rationale Diagnosing epilepsy can be complexMisdiagnosis occurs in 5–30% of people. Crucial that specialists involved early in diagnosing epilepsy and that they take great care to establish the correct diagnosis
Quality Statement 1 Referral to a Specialist
A paediatrician with training and expertise in epilepsy who has for example:
Completed the specialist training module on epilepsy developed by RCPCH, or
Worked for a min of 6 months in a tertiary centre for neurology in children and attended appropriate paediatric epilepsy training courses. The care of the specialist's patients with epilepsy should be part of an ongoing peer review process related to epilepsy care
NICE Quality Standards definition
Who is a Specialist?
Statement 1 Referral to a Specialist
Retrospective review of medical notes of 25 Primary care referrals for suspected epilepsy in children who had an EEG between Jan 2013 and Oct 2013:
Time interval between receipt of GP referral and clinic review
Paediatrician performing the review
Time interval between Referral and Clinic
60%
40%
0
2
4
6
8
10
12
14
16
within 2 weeks >2 weeks
Nu
mb
er o
f p
atie
nts
0
1
2
3
4
5
6
HMS RPB JE DMT JMC WDC GJX VPB HNF IAC MAL
Number of epilepsy patients seen at clinics
44%
56%
0
2
4
6
8
10
12
14
Number of Patients
Paediatricianwith
expertise inEpilepsy
Generalpaediatrician
Epilepsy patients seen by
Quality Statement 1Referral to a specialist and
seen in 2 weeks
28%
72%
Seen by PWEEwithin 2 weeks
Rest
Paediatricians with expertise in epilepsy are seeing just over 40% of GP referrals for suspected epilepsy
60% of GP referrals for suspected epilepsy are seen within 2 weeks of receipt of referral
Only 28% of all GP referrals are seen by PWEE within 2 weeks
Statement 1Results Summary
Statement 1Recommendation
Changes to clinic booking rules to allow more referrals to be seen by PWEE
? Separate pathway for GP referrals (not C&B)
Children and young people having initial investigations for epilepsy undergo the tests within 4 weeks of them being requested
RationaleAnxious time for patients and families The earlier a correct diagnosis of epilepsy is made, the sooner tailored therapy can be initiated
Quality Statement 2 Investigations
Audit of every EEG requested and subsequently performed from 01/01/13 to 30/08/13
Data collected:Request dateDate performedType of EEG performed
Statement 2Investigations (EEG)
51 EEGs performed 50 were standard EEGs, 1 was 24 hour ambulatory 42 were performed within 4 weeks of request The 9 EEGs that were performed more than 4
weeks from request date were all standard EEGs 6 of the 9 that were performed more than 4 weeks
from request date were requested in August
Statement 2 Results
EEG results
EEG Results
82%
18%
0
10
20
30
40
50
Number of
Patients
Within4 weeks
>4weeks
Time between date of request and date of EEG
Statement 2 Results Summary
Excellent performance overallSignificant amount of EEGs done
on the day of requestMajority of the 4 week+ delays
were in July/August ?busy time for neurophysiology in
August
Quality Statement 5 Epilepsy Specialist Nurse
Children and young people with epilepsy are seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
DefinitionThe role ESN is to support both epilepsy specialists and generalists, to ensure access to community and multi agency services and to provide information, training and support to the child, young person or adult, families, carers and others involved in the child's education, welfare and wellbeing
Statement 5Rationale
• Epilepsy specialist nurses play a key role in supporting continuity of care between settings for people with epilepsy
• There is some evidence that ESN improve clinically important outcomes such as knowledge, anxiety and depression for people with epilepsy in secondary and tertiary care
Statement 5Quality Measures
a) Proportion of children and young people with epilepsy who have seen a named epilepsy specialist nurse at diagnosis
b) Proportion of children and young people with epilepsy who have seen an epilepsy specialist nurse at their review
c) Proportion of children and young people with epilepsy who have the contact details of a named epilepsy specialist nurse
Method
Patients were identified from an 8 week review of both general and epilepsy clinics
This review yielded a total of 79 children identified as having epilepsy
41 were reviewed in epilepsy clinics and 38 were in general clinics
Data was then obtained from reviewing clinic letters and notes and from a database held by our ESN. Some patients were also contacted by telephone
Results
Epilepsy clinics
General Clinics
Totals
No of patients with epilepsy
41 (52%) 38 (48%) 79
New diagnosis since Nov 13
7 1 8
Seen by nurse at diagnosis
4 (57%) 0 4 (50%)
Seen by nurse at time of review
33 (80%) 4 (10.5%) 37 (47%)
Documentation of nurse presence
17 (41%) 1 (2.6%) 18 (23%)
No. seen in nurse-led epilepsy clinic
3 2 5
No. with nurse contact details
40 (97%) 24 (63%) 64 (81%)
Percentage of patients with epilepsy seen in an epilepsy clinic vs a general
clinic
A) Percentage of patients seen by an epilepsy specialist nurse at time of diagnosis since November
2013.
B) Percentage of patients seen by an ESN at review
Percentage of Patients seen by an ENS at review in an epilepsy clinic vs a
general clinic
Epilepsy clinics 41 PatientsGeneral clinics 38 Patients
C) Percentage of patients across all clinics who have the contact details for the epilepsy
specialist nurse
Statement 5Quality Measures Results
Summary
A) Proportion of children and young people with epilepsy seen by a named ESN at diagnosis 50%
B) Proportion of children and young people with epilepsy who have seen an epilepsy specialist nurse at their review (since Nov 2013) 47% (23% documented)
C) Proportion of children and young people with epilepsy who have the contact details of a named epilepsy specialist nurse 81%
More epilepsy nurse time to attend reviews, especially at general paediatric clinics.
If patients are attending clinic for their epilepsy, liaise with Epilepsy Nurse regarding her presence at the appointment, where possible.
Better documentation in notes/clinic letters regarding the presence of an ESN at review.
Audit patient/parent satisfaction with access to ESN
Statement 5Recommendations
Quality Statement 6Emergency Care Plan
Children and young people with a history of prolonged or repeated seizures have an agreed up-to-date, written emergency care plan
Emergency Care Plan
Definition Should describe what happens in event of a
prolonged or repeated seizure, including pharmacological treatment that should be given and actions to take, who to contact and when.
Agreed between child or young person with epilepsy, their family/carers if appropriate and their primary and secondary healthcare professionals.
Training is required to initiate treatment at home or in the community
The plan should be reviewed at least annually
Method
Patients identified from an 8 wk review of general & epilepsy clinics.
Data obtained from reviewing ESN database which lists all patients who are prescribed midazolam. ESN also has a folder which holds the most up to date emergency plan for each of these children.
79 epilepsy patients were identified. Of these, 24 prescribed rescue medication for prolonged or repeated seizures.
10 patients were reviewed in epilepsy clinics.
14 were seen in general clinics.
Statement 6Results
Bar chart to show percentage of patients with prolonged or repeated seizures and an up to date
Emergency Plan
Quality Statement 6Results Summary
Children and young people with a history of prolonged or repeated seizures (on rescue medication) have an agreed up to date, written emergency care plan 54%
Only 36% of patients attending general paediatric clinics have an agreed up-to-date emergency care plan (vs 80% in those attending epilepsy clinics).
Statement 6Recommendations
Patients with prolonged or repeated seizures should have an up-to-date emergency plan reviewed and documented at every review.
More epilepsy nurse time is needed to attend reviews and ensure up-to-date emergency care plans.
Audit patient/ parent satisfaction with emergency care plans.
Children and young people who meet the criteria for referral to a tertiary care specialist are seen within 4 weeks of referral
RationaleVital for diagnostic uncertainty, specialised advice on drugs, surgery, epilepsy combined with other complicated medical conditions or psychological problems. Timely and appropriate access to tertiary services remains variable across the country
Quality Statement 7Tertiary referral
Referral Criteria to tertiary services
(NICE Guidelines)
Referral should be considered when 1 or more of the following criteria are present:
1.Epilepsy not controlled with AED within 2 yrs of onset
2.Management is unsuccessful after 2 drugs3.The child is under 2 years of age4.The child or young person experiences, or is at risk
of, unacceptable side effects from medication5.There is a unilateral structural lesion6.There is psychological or psychiatric comorbidity7.Diagnostic doubt as to the nature of seizures or
seizure syndrome
Statement 7 Method
Epilepsy patients identified from lists of patients attending paediatric clinics between 4 Feb 2014 and 28 Mar 2014
A total of 67 patients identified 37 out 67 are seen by PWEE 26 out of 67 were candidates for tertiary
referral 14 out of those candidates were referred or
already under review by paediatric neurologist
18%
27%
10%
22%
0
2
4
6
8
10
12
14
16
18
Number of Patients
MAL HNF IAC JMC WDC RPB VPB TST JCS NR HMS JE DMT
Clinics attended by epilepsy patients
Proportion of epilepsy patients in paediatric clinics
General Paed clinic22%
JMC clinic (neurodisability)
PWEE-run clinic55%
Yes
No
39%
Epilepsy patients for tertiary referral
Referral to Tertiary Neurology
46%54%
0
2
4
6
8
10
12
14
16
Referred Not referred
Nu
mb
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f ep
ilep
sy p
atie
nts
Patients not referred to tertiary
Uncontrolled after 2 meds, behavioural issues (2 seizures in last yr). Not indicated!
Behavioural problems ?ADHD. 1AED. Not indicated!
Autism with learning difficulties. 1AED. Not indicated!
LD + behavioural problems. 1 AED. Not indicated! <2 yr old.Well controlled on 1 AED. Development-
N. Not indicated!
Patients not referred to tertiary
CP+ ASD. Not seizure free after 2 yrs and one CBZ only
ASD + LD. Many DNAs. 1 AED -not seizure-free Not controlled with 2 meds Younger than 2. 1 AED. 5 months since diagnosis Learning difficulties. Rt hemi. Well-controlled- 1 AED severe LD +hypotonia. 1 AED and well controlled LD+ behavioural problems. Multiple AEDs. Now
seizure free on 1
Statement 7Results Summary
Just over 50% of candidates for referral to tertiary neurology have been referred.
There is some debate as to whether those not referred (5 out of 12) needed a referral.
Unable to determine time interval between referral and tertiary neurology clinic in those seen.
Statement 7Recommendation
Audit patient or parent/carer satisfaction with referral to tertiary care specialist.
Keep a record of date of request for a referral and re-audit.
Quality Statement 9Transition
Young people with epilepsy have an agreed transition period during which their continuing epilepsy care is reviewed jointly by paediatric and adult services
Definition of period of transitionshould be a joint clinical action between paediatric and adult services, with at least 1 meeting at a joint consultation and a clear action plan for conducting a review after the young person has transferred into adult services
Statement 9Transition
Rationale Important for young people managing the
physical and mental transition from adolescence to adulthood.
Vital to develop and maintain the self-esteem and confidence of the adolescent with epilepsy.
Provides an important opportunity to review the diagnosis, classification, cause and management of a young person's epilepsy before they enter adulthood.
Local Set up for epilepsy transition
Teenage clinic for patients with epilepsy aged 14 years and above (excludes children with neurodisability)
7 teenage clinics a year (3 MAL, 4HNF)- best practice tariff
Adult and paediatric epilepsy nurses present at each clinic
Statement 9Results
Reviewed case notes of children 14 years or over
11 out of 67 are 14 years or older
4 out of 11 neurodisability patients and hence excluded
All remaining 7 teenagers are seen in Teenage clinics
Statement 9Recommendation
Handover clinics with adult neurologist- underway
Audit teenage epilepsy patient experience of transition to adult services
28% patients referred for suspected epilepsy seen by PWEE within 2 weeks
Majority of EEGs are done within 4 weeks of request
50% of epilepsy patients are seen by ESN at their diagnosis and 47% seen by ESN at their review
54% of patients with epilepsy have an agreed up to date, written emergency care plan (36% in general paed, 80% in epilepsy clinics)
Summary
More referral to tertiary neurology is needed.
There is a need for a handover clinic with an adult neurologist.
There are areas for improvement highlighted in this audit.
There is a need to re-audit in 2 years following implementation of the proposed recommendations
Summary
Any questions?