Background
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What factors influence health care professionals when diagnosing neonatal seizures?
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How many health care professionals utilise aEEG when diagnosing neonatal seizures and what were health care professionals’ views of its use?
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How many health care professionals routinely treated clinical and electrographic seizures and what factors lead them to treat a neonate with anti-convulsant drugs?
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What anti-convulsant drugs are health care professionals using to treat neonatal epileptic seizures and in what order?
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Why health care professionals choose the drugs they do, and what are their attitudes on their effectiveness and side effects?
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What steps or evidence are needed to improve confidence in diagnosis and treatment of neoantal seizures,and to reduce variation in care between health care professionals when treating neonatal epileptic seizures?
Methods
Phase I
Phase II
Results
Phase I: quantitative data on neonatal seizures
Question | Responders | |||||
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All responders | Working predominately in a NICU - Level 3 | Working in paediatrics, Level 2 unit, or interest in epilepsy | Working predominately in paediatric neurology / neurodisability unit | All Consultant Responders | ||
Do you treat clinical seizures (i.e. where there is no available aEEG / EEG data to confirm abnormal movements are seizures? | Yes | 65/100 (65.0%) | 18/33 (54.6%) | 38/45 (84.4%) | 9/22 (40.9%) | 54/81 (66.7%) |
No | 9/100 (9.0%) | 4/33 (12.1%) | 3/45 (6.7%) | 2/22 (9.1%) | 5/81 (6.1%) | |
Sometimes | 26/100 (26.0%) | 11/33 (33.3%) | 4/45 (8.9%) | 11/22 (50.0%) | 22/81 (27.2%) | |
Do you treat electrical seizures (i.e. diagnosed on aEEG/EEG) which do not have any clinical features to see? | Yes | 34/100 (34.0%) | 14/33 (42.4%) | 15/45 (33.3%) | 5/22 (22.7%) | 27/81 (33.3%) |
No | 17/100 (17.0%) | 1/33 (3.0%) | 15/45 (33.3%) | 1/22 (4.5%) | 11/81 (13.6%) | |
Sometimes | 49/100 (49.0%) | 18/33 (54.6%) | 15/45 (33.3%) | 16/22 (72.7%) | 43/81 (53.1%) | |
Do you think electrical seizures are: | As important as clinical seizures | 53/100 (53.0%) | 17/33 (51.5%) | 25/45 (55.6%) | 11/22 (50.0%) | 43/81 (53.1%) |
More important than clinical seizures | 9/100 (9.0%) | 2/33 (6.1%) | 4/45 (8.9%) | 3/22 (13.6%) | 6/81 (7.4%) | |
Less important than clinical seizures | 16/100 (16.0%) | 6/33 (18.2%) | 5/45 (11.1%) | 5/22 (22.8%) | 14/81 (17.3%) | |
I don’t know | 22/100 (22.0%) | 8/33 (24.2%) | 11/45 (24.4%) | 3/22 (13.6%) | 18/81 (22.2%) | |
Do you think seizures themselves cause harm to the brain/ development (i.e. not related to apnoea/hypoxia and independent of the underlying cause)? | Yes | 62/100 (62.0%) | 24/33 (72.7%) | 27/45 (60.0%) | 11/22 (50.0%) | 53/81 (65.4%) |
No | 15/100 (15.0%) | 3/33 (9.1%) | 9/45 (20.0%) | 3/22 (13.6%) | 12/81 (14.8%) | |
I don’t know | 23/100 (23.0%) | 6/33 (18.2%) | 9/45 (20.0%) | 8/22 (36.4%) | 16/81 (19.8%) | |
Do you routinely use cerebral function monitoring (aEEG) for monitoring neonates at high risk of seizures or those having recurrent seizures? | We use it in all neonates at risk of seizures | 44/94 (46.8%) | 20/31 (64.5%) | 12/43 (28.0%) | 12/20 (60.0%) | 39/78 (50.0%) |
We use it only in those with HIE | 10/94 (10.6%) | 5/31 (16.1%) | 5/43 (11.6%) | 0/20 (0.0%) | 9/78 (11.5%) | |
We use it in selected cases, HIE and non-HIE | 20/94 (21.3%) | 5/31 (16.1%) | 8/43 (18.6%) | 7/20 (35.0%) | 14/78 (18.0%) | |
We don’t use it at all | 19/94 (20.2%) | 1/31 (3.3%) | 17/43 (39.5%) | 1/20 (5.0%) | 16/78 (20.5%) | |
I don’t know | 1/94 (1.1%) | 0/31 (0%) | 1/43 (2.3%) | 0/20 (0%) | 0/78 (0%) | |
With reference to Phenobarbital, do you think it is … | Very effective | 29/94 (30.9%) | 6/31 (19.4%) | 16/43 (37.2%) | 7/20 (35.0%) | 25/78 (32.1%) |
Stops some seizures but not all | 65/94 (69.1%) | 25/31 (80.6%) | 27/43 (62.8%) | 13/20 (65.0%) | 53/78 (67.9%) | |
Not at all effective | 0/94 (0%) | 0/31 (0%) | 0/43 (0%) | 0/20 (0%) | 0/78 (0%) | |
Have you tried Levetiracetam for treatment of neonatal seizures? | Yes | 65/94 (69.1%) | 26/31 (83.9%) | 19/43 (44.2%) | 20/20 (100%) | 59/78 (75.6%) |
No | 29/94 (30.9%) | 5/31 (16.1%) | 24/43 (55.8%) | 0/20 (0%) | 19/78 (24.4%) | |
Do you think Levetiracetam (Keppra) is … | Very effective | 21/65 (32.3%) | 8/26 (30.8%) | 9/19 (47.4%) | 4/20 (20.0%) | 19/59 (32.2%) |
Stops some seizures but not all | 44/65 (67.7%) | 18/26 (69.2%) | 10/19 (52.6%) | 16/20 (80.0%) | 40/59 (67.8%) | |
Not at all effective | 0/65 (0%) | 0/26 (0%) | 0/19 (0%) | 0/20 (0%) | 0/59 (0%) | |
Compared to Phenobarbital, do you think Levetiracetam is | Better than phenobarbital | 14/65 (21.5%) | 7/26 (26.9%) | 3/19 (15.8%) | 4/20 (20.0%) | 13/59 (22.0%) |
As good as phenobarbital | 17/65 (26.2%) | 3/26 (11.5%) | 9/19 (47.4%) | 5/20 (25.0%) | 14/59 (23.7%) | |
Less good than phenobarbital | 6/65 (9.2%) | 1/26 (3.9%) | 1/19 (5.2%) | 4/20 (20.0%) | 6/59 (10.2%) | |
I don’t know | 28/65 (43.1%) | 15/26 (57.7%) | 6/19 (31.6%) | 7/20 (35.0%) | 26/59 (44.1%) |
Drug | Proportion of responders saying they had experience of using in neonates (n = 94) |
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Phenytoin | 74 (78.2%) |
Levetiracetam | 65 (73.3%) |
Midazolam | 62 (66.0%) |
Lorazepam | 18 (19.2%) |
Paraldehyde | 13 (13.8%) |
Lignocaine | 15 (16.0%) |
Vitamins / pyridoxine | 12 (13.3%) |
Diazepam | 5 (5.3%) |
Clonazepam | 4 (4.4%) |
Topiramate | 3 (3.3%) |
Carbamazepine | 3 (3.3%) |
Sodium valproate | 1 (1.1%) |
Vigabatrin | 1 (1.1%) |
Prednisolone | 1 (1.1%) |
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None 39/49 (79.6%)
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Irritability, hyperkinetic movements / jitteriness 5 (10.2%)
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Sleepiness 3 (6.1%)
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Electrolyte disturbance 2 (4.1%)
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Respiratory depression 1 (2.0%)
Phase II: qualitative data on the diagnosis and treatment of neonatal seizures
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Managing uncertainty with neonatal seizures
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Moving practice forward
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Multidisciplinary team working.
Managing uncertainty associated with neonatal seizures
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weighing up the evidence for a diagnosis of seizures
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deciding when to treat
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choosing anti-convulsant medication.
“You’re much more persuaded by the nursing staff as a junior doctor cos you totally trust them … . So, if they said to you ‘that baby had a seizure’ you probably would have been much more likely to go along”.
“If you are sitting in an outpatient clinic and the GP [General Practitioner] has made a referral that this patient has had episodes of funny movements and they are worried they might be seizures, the thing that you put great emphasis on is the history. You listen to what the parent has to say, they may have taken a video of it on their phone.... Flip to a post-natal ward, nobody believes a parent - ever. So, if a parent presents their baby having funny movements, a midwife will not believe anything until she has seen it for herself. Bizarrely, the doctors, who if they were in paediatrics would have no problem going on the maternal story, will not believe the maternal story until they have seen it for themselves. And you have to ask yourself ‘what is it that so changes their attitude to being in paediatrics and being in neonates?’”
“We will be told that they’re fitting and when you ask for a description it is often hard to get specific detail about that. So, it sometimes is hard to know whether what they are describing is a true seizure or whether it is an involuntary movement or some other, um, neurological phenomenon.”
“I think it’s difficult with medical colleagues, isn’t it? If they say ‘it’s clonic’, I probably wouldn’t quiz them in great detail about whether their limbs are stiff and consistent, you know what I mean? … I would probably be a bit more inclined to accept at face value their interpretation of the seizure type, but of course that might incorrect.”
“The unit has got semi-direct access to an EEG machine and even that sometimes takes us a day. … And then in other units, I have only just learned this, because we were discussing the network seizure guideline, that they didn’t have access to EEG machines at all. I was a bit shocked actually.”
“I’m not particularly competent or confident from my perspective. I don’t, we never used it in my training.”
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The natural history of the seizures, i.e. acute symptomatic seizures “burn out”
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Whether the seizures were accompanied by significant clinical features like profound apnoea / desaturation
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Frequency and duration
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Whether electrical seizures were as important as clinical seizures
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Whether seizures cause harm independent of the underlying aetiology
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The side effects of the anti-convulsant drugs
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Parental or nursing staff anxiety.
“I have not got any set rules. Within the unit we really have not got any set rules. Um, we’ve all got slightly different thresholds from when we would treat, really depending on the clinical scenario.”
“We used to have the Levene rule of 3. So, you needed to have 3 seizures or a seizure lasting more than 3 minutes, before we would treat, okay, I think that was in an hour”.
“The question is, ‘Is it better to have a more normal background EEG if you can, but a child that’s really flat and moribund because you’ve got them on 5, 6 drugs?’. … in certainly my training, it was very much ‘treat the child or the infant, not the EEG’”.
“the link between seizure frequency and severity and brain development is weak and difficult. We don’t really understand it, why do some children do very badly with their development and others do well.”
“The problem with the phenobarbitone yes, so the half life time was 5-7 days. So, we treat HIE babies with phenobarb, maybe for electrical seizures, and then you have to tell the parents ‘Well, because we had to treat with this, it will take the baby at least 3 days to wake up and to come back to normal and that is not because the brain is damaged’.”
“I think there’s sometimes pressure, I mean that in a nice way, not in you know not a bad way at all, from nursing staff to get to get rid of all funny movements.”
“Neonatology people are quite traditional in what they use … you will find that most people stick to what they know, what they use, and therefore they will always follow the guidelines.”
Moving practice forward
“It’s not research, it’s just identifying ‘what is happening?’ and ‘What are people doing and why are they doing it?’ This is exactly what you want to understand, and you need to understand why people feel safe or what is needed to make them feel safe … it’s not about research knowing why levetiracetam might be better, but if you can just point out the new doctrine has same efficacy but they wake up earlier, so the parents are more pleased about whatever this is about it, and then you can set up a new strategy including all these aspects … I think that this is ending up may be in a national survey and a guideline and that might be influential … Neonatologists are not brave. It’s not like neurosurgeons: you give them a new toy and they will stick the toy in the head of a patient.”