Epilepsy12 National Audit Round 2 Final Unit Report for: University Hospital of North Tees and Hartlepool

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1 United Kingdom collaberative clinical audit of health care for children and young people with suspected epileptic seizures Epilepsy12 National Audit Round 2 Final Unit Report for: University Hospital of North Tees and Hartlepool Site specific report on the results for: Service Descriptor, Clinical Audit and Patient Reported Experience Measures November 2014 Commissioned by the Healthcare Quality Improvement Partnership

2 Background and methodology This final unit report from Round 2 of Epilepsy12 contains results from the service descriptor, clinical audit and PREM questionnaire (if five or more PREM questionnaires received) audit domains. If a unit did not submit service descriptor or clinical audit data results will be shown as throughout those sections. Full details of the audit methodology can be found at: Unit details Epilepsy12 Unit Name Name of audit unit lead Names of acute and community trusts University Hospital of North Tees and Hartlepool PS Sivakumar, Beena Kurup North Tees and Hartlepool NHS Foundation Trust Names of component paediatric services/hospitals University Hospital Of North Tees University Hospital Of Hartlepool Affliated tertiary services The Great North Childrens Hospital EEG department(s) James Cook University Hospital Marton Road Middlesbrough TS4 3BW The Great North Childrens Hospital New Victoria Wing Royal Victoria Infirmary Queen Victoria Road Newcastle NE1 4LP Case ascertainment in Round 2 Children on list received from EEG department Children defined as excluded (did not meet audit inclusion criteria) Children where it was not possible to identify whether they met the audit inclusion criteria Children entered into the audit Children who were entered into the audit initially but not included in final analysis as their care was transferred to another unit at some point during the 12 months following the first paediatric assessment Children entered into audit but not included in the data analysis as included inappropriate data Children who met the audit criteria but were not successfully entered on web tool Ascertainment completeness Data completeness Your unit UK

3 Service Descriptor Results Staffing and clinics WTE general paediatric consultants (community or hospital based) employed in the audit unit WTE general paediatric consultants with expertise in epilepsy employed in the audit unit WTE epilepsy specialist nurses (ESNs) employed in the audit unit Number of consultant (or associate specialist) led secondary level 'epilepsy clinics' for children or young people in the audit unit per week Age outpatient adult serices in the audit unit accepts referrals from primary care for young people with a seizure or seizures Median - 16 Min - 13 Max years old Median - 16 Min - 14 Max - 18 Services The audit unit maintains a database or register of Yes for some - 26/193 children with epilepsies children 34/186 Audit unit hosts paediatric neurology clinics - 164/193 Yes 159/186 Specific clinic for young people/teenagers with epilepsies - 35/193 No 49/186 Handover' clinic - 57/193 Yes 71/186 Other defined handover or referral to adult services - 108/193 No 117/186 Local adult specialist epilepsy nurse - 99/193 No 100/186 Youth worker - 14/193 No 16/186 Investigations 12 lead ECG - 190/193 Yes 184/186 Awake' MRI - 186/193 Yes 176/186 MRI with sedation - 119/193 Yes 111/186 MRI with general anaesthetic - 96/193 Yes 92/186 Rountine EEG - 115/193 No 112/186 Sleep-deprived EEG - 114/193 No 111/186 Melatonin induced EEG - 98/193 No 102/186 Sedated EEG - 79/193 No 73/ hour ambulatory EEG - 80/193 No 82/186 Inpatient video telemetry - - No 33/186 Outpatient video telemetry - - No 15/186 Home video telemetry - - No 4/186 Portable EEG on paediatric ward in audit unit - 101/193 No 100/186

4 Clinical Audit Results - Characteristics of the audit cohort Demographic characteristics Sex Age Setting of first paediatric assessment Outcome Neurodisability - N=4945 N=16 N=3449 Female (46) 7 (44) 1542 (45) Male (54) 9 (56) 1907 (55) Infant (24) 3 (19) 861 (25) Pre-school () 3 (19) 831 (24) School aged (37) 5 (31) 1182 (34) Young people (19) 5 (31) 572 (17) Acute (44) 10 (63) 1544 (45) Non-acute (56) 5 (31) 1889 (55) Unknown - 1 (<1) 1 (6) 16 () Presumed alive (10) 16 (10) 3414 (99) Died - 14 (<1) 0 () 10 (0.3) Number with one or more neurodisability Autistic spectrum disorder Moderate, severe or profound learning disbailities or global development delay Cerebral palsy Neurodegenerative disease or condition An identified chromosomal disorder with a neurological or developmental component Attention deficit hyperactivity disorder Other () 3 (19) 782 (23) (19) 1 (33) 283 (36) (31) 0 () 244 (31) (1) 1 (33) 99 (13) - 15 (2) 0 () 12 (2) - 57 (6) 0 () 68 (9) - 89 (9) 0 () 82 (1) (23) 1 (33) 181 (23) Percentages are calcualted with the number of children with evidence as a neurodisability as the denominator Diagnosis First paediatric assessment 12 months after first paediatric assessment 2 or more episodes of epileptic seisures 1 episode of epileptic seizure (single and cluster) (3) 2 (13) 1169 (34) (16) 7 (44) 334 (1) Non-epileptic episode(s) (18) 1 (6) 512 (15) Uncertain or unclear episode(s) (365) 6 (38) 1434 (42) 2 or more episodes of epileptic seisures (36) 1 (6) 1215 (35) 1 episode of epileptic seizure (single (5) 3 (19) 422 (12) and Non-epileptic cluster) episode(s) (45) 1 (6) 1513 (44) Uncertain or unclear episode(s) (14) 11 (69) 299 (9) Anti-epileptic drugs (AEDs) Commenced on 1 or more AED Commenced on 3 or more AEDs (31) 7 (44) 334 (1) (3) 0 () 512 (15)

5 Clinical Audit Results - Characteristics of the audit cohort Seizure types Round 1 Round 2 (Generalised) tonic-clonic seizures (39) 0 () 474 (39) Absence seizures (including typical or atypical) (31) 0 () 362 (3) Focal seizures (16) 0 () 253 (21) Secondarily generalized seizures (6) 0 () 111 (9) Myoclonic seizures (7) 0 () 89 (7) Focal motor seizures - 96 (5) 0 () 91 (7) Infantile spasms - 48 (3) 0 () 47 (4) No seizure type stated (6) 1 (10) 46 (4) Tonic seizures - 66 (4) 0 () 38 (3) Other seizure stated () 29 (2) Only seizure types with more than 1 of patients are included in the table above Syndrome category identifiers Genetic generalised - 13 (<1) 0 () 43 (4) Genetic focal/multifocal - 13 (<1) 0 () 27 (2) Idiopathic generalised (22) 0 () 339 (28) Idiopathic focal - 79 (5) 0 () 108 (9) Structural (metabolic) generalised - 4 (<1) 0 () 32 (3) Structural (metabolic) focal/multifocal - 23 (1) 0 () 32 (3) Probably symptomatic (or cryptogenic) or symptomatic generalised - 52 (3) 0 () 45 (4) Probably symptomatic (or cryptogenic) or symptomatic and focal/multifocal - 98 (6) 0 () 97 (8) Other (62) 1 (10) 598 (49) Epilepsy syndromes Round 1 Round 2 BECTS (benign rolandic epilepsy) (9) 0 () 95 (8) Other epilepsy syndrome stated (7) 0 () 229 (19) Childhood absence epilepsy (CAE) - 65 (4) 0 () 116 (1) Defined as unclassified - 54 (3) 0 () 75 (6) Juvenile absence epilepsy - 48 (3) 0 () 39 (3) Temporal lobe epilepsy - 41 (2) 0 () 37 (3) Frontal lobe epilepsy - 32 (2) 0 () 23 (2) Juvenile myoclonic epilepsy (JME) - 27 (2) 0 () 39 (3) West syndrome (infantile spasms) - 25 (1) 0 () 31 (3) Occipital lobe epilepsy - 17 (1) 0 () 9 (1) Doose syndrome - 16 (<1) 0 () 16 (1) Panayiotopoulos syndrome - 10 (<1) 0 () 11 (1) Dravet syndrome - 5 (<1) 0 () 2 () Parietal lobe epilepsy - 1 (<10) 0 () 0 () No epilepsy syndrome stated (53) 1 (10) 502 (41) Note: The figures in the table above may not add up to 10 as some children have more than one type, category or syndrome reported. Some less common seizure types have not been reported at unit level.

6 Clinical Audit Results - Characteristics of the audit cohort Seizure free outcome data for those with epilepsy Known to be seizure free Not seizure free Not recorded 6 to 12 months after 9 to 12 months after assessment assessment 1 (10) 427 (35) 1 (10) 614 (51) 0 () 709 (58) 0 () 464 (38) 0 () 79 (7) 0 () 137 (11) Epilepsy12 indicators There are 12 performance indicators that measure care over 12 months. Units are defined as a negative outlier if they are below two standard deviations from the UK value and a positive outlier if they are higher than two standard deviations from the UK value. The table below indicates the outlier status for your unit for each of the indicators. Many of the indicators are based on small numbers of children at a unit level. This means that there will be a lot of natural variation in the percentage values for units, a difference of one or two children included (or not) in the indicator will make a big difference to the percentage value and units will have to have a percentage a long way from the UK value to be identified as an outlier. As the ideal for all indicators is 10 all units scoring less than this have scope for improvement. Professionals Assessment and classification Investigation Management and outcome 1 Paediatrician with expertise in epilepsies 2 Epilepsy specialist nurse 3 Tertiary involvement 4 Appropriate first clinical assessment 5 Seizure classification Negative outlier 6 Syndrome classification Negative outlier 7 ECG Postive outlier 8 EEG 9 MRI 10 Carbamazepine 11 Accuracy of diagnosis Negative outlier 12 Water safety For full details of the definitions of the Epilepsy12 indicators please see the methodology document at www. rcpch.ac.uk/epilepsy12

7 Epilepsy12 Performance Indicators The charts below show the achievement of the Epilepsy12 indicators compared to all units in the audit. Your unit is shown by the black line. Professionals 1. Paediatrician with expertise in epilepsies 2. Epilepsy specialist nurse 3. Paediatric neurologist of 1 (10) children had had input from a consultant paediatrician with expertise in epilepsies by one year. 1 of 1 (10) children with epilepsy were referred for input by an epilepsy specialist nurse by one year. 0 of 1 () children meeting defined criteria for paediatric neurology referral had input of tertiary care by one year. Assessment and classification 4. Appropriate first clinical assessment 5. Seizure classification 6. Syndrome classification of 16 (75) children had evidence of an appropriate first paediatric clinical assessment. 6 0 of 1 () children with epilepsy had a seizure classification by one year. 6 0 of 1 () children with epilepsy with an epilepsy syndrome classification by one year.

8 Epilepsy12 Performance Indicators Investigations 7. ECG 8. EEG 9. MRI of 11 (10) children with convulsive seizures had an ECG by one year of 16 (94) children who had an EEG in whom there were no defined contraindications. 6 0 of 1 () children with defined indications for an MRI had had an MRI by one year. Other 10. Appropriate carbamazepine 11. Accuracy of diagnosis 12. Information and advice of 0 () children given carbamazepine in whom there were no defined contraindications. 6 0 of 5 () children diagnosed with epilepsy still had that diagnosis at one year. 6 1 of 1 (10) children had documented evidence of communication regarding water safety.

9 Detailed Performance Indicators Professionals Assessment & classification of children with epilsepsy with input by a 1a consultant paediatrcian with expertise in epilepsies by one year of children with epilsepsy who are commenced on AEDs with input by a 1b consultant paediatrcian with expertise in epilepsies by one year of children with epilepsy referred for 2a input by an epilepsy specialist nurse by one year 2b of children with epilepsy who were commenced on AEDs referred for input by an epilepsy specialist nurse by one year in Round 1 in Round of children meeting defined criteria for paediatric neurology referral with input of tertiary care by one year 4 Appropriate first clinical assessment a of children with descriptions of episode of children with descriptions of age of 4b child/timing of first episode of children with descriptions of 4c frequency of children with descriptions of general 4d examination of children with description of 4e neurological examination Your unit Newcastle Region England in Round 1 All units in UK 25th centile 75th centile in Round 1 25th centile in R1 75th centile in R1

10 Other Investigation Assessment & classification of children with description of 4f developmental history or educational progress of children three years and over with 4g descriptions of emotional or behavioural problems of children with epilepsy with seizure 5 classification by one year of children with epilepsy with epilepsy 6a syndrome by one year of children with epilepsy with epilepsy 6b syndrome or category identifiers by one year of children with convulsive seizures with 7 an ECG by one year of children who had an EEG in who there 8 are no defined contraindications of children with defined indications for 9a an MRI who had an MRI by one year 9b a 12b of children with defined indications for an MRI who had an MRI or CT by one year of children given carbamazepine in who there were no defined contraindications of children diagnosed with epilepsy who still had that diagnosis at one year of females over 12 years given AEDs who had documented evidence of discussion of pregnancy and contraception of children diagnosed with epilepsy with documented evidence of communication regarding water safety Your unit Newcastle Region England All units in UK in Round 1 in Round 1 in Round 1 25th centile 75th centile in Round 1 25th centile in R1 75th centile in R

11 Patient Reported Experience Measures Characteristics of children Your unit UK N=2335 Year of birth Not answered 0.9 Gender Female 47.1 Male 52.3 Not answered 0.6 Diagnosis Learning difficulties/developmental delay 43.6 Cerebral palsy 9.4 Autism or autistic spectrum disorder 9. Attention deficit hyperactivity disorder (ADHD) 5.3 None of the above 40.6 Timing of first Less than one year ago 19.5 assessment by Between one and two years ago 18.7 paediatrician Two or more years ago 57.3 Not answered 4.4 Age at first Infants (< 2 years) 23.6 assessment Pre-school (2 - <5 years) 22.7 School (5 - < 12 years) 31.4 Young people (12 - <16 years) 9.5 Not answered 12.8 Services Hospital general paediatric clinic 12.7 attended Community paediatric clinic 12.7 Teenage epilepsy clinic 2.9 Specific epilepsy clinic 19.5 Paediatric neurology clinic 28.8 A&E 23.6 GP 21.7 Drugs currently Sodium Valproate 41.2 prescribed Carbamazepine 17.9 Lamotrigine 19.8 Levetiracetam 18.6 Overall satisfaction Your unit Yes Unsure No UK

12 Patient Reported Experience Measures Impressions of service over past year showing the percentage who agreed or strongly agreed Staff are not good at working together The waiting area does not have activities for my age I am not seen by the service often enough At times I felt I was not allowed to ask questions Staff did not explain things in a way I could follow Staff did not take time to get to know me The information I was given was hard to understand Your unit UK Overall staff are friendly and polite when going for tests Overall staff are friendly and polite in the ward The length of time spent with staff at the clinic is about Staff tell me if my appointment is going to be late Staff make sure it is easy to attend the clinic It is easy to contact someone in the epilepsy team Overall, staff seemed to know what they were doing Staff respected my need for privacy during clinic visits Staff took my thoughts into account when making Staff listened to what I had to say Overall I have received enough information about Information needs Respondents were asked 'What would you like more information on?' and could select multiple answers. I do not require any more information Reasons for, and results of, tests Reasons for changing medication Cause of my epilepsy Support groups Possible side effects of medication What to tell other people about my epilepsy Contact with other young people with epilepsy Guidance on what I can or can t do Your unit UK

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