Minutes of meeting
Dr
Richard Bowker (fellow)
Gordon
Denney (lay
representative/sponsor)
Dr Monica Lakhanpaul (guideline methodologist)
Sr Sue Shipston (nurse practitioner A+E)
Prof. Terence Stephenson (chair)
Dr William Whitehouse (paed. neurologist)
Apolologies from: Dr
David Bond (general paediatrician)
Dr
Jim Bonham (clinical chemist)
Dr
Ken Brown (general practitioner)
Dr
Ian Maconochie (paed.
A+E)
Dr
Stephanie Smith (paed.
A+E)
Dr
Harish Vyas (PICU)
Dr
John Walter (metabolic medicine)
Not yet appointed: General
A+E physician
Patient
representative
It was explained that a grant from the National Reyes Syndrome
Foundation had been awarded to develop an evidence-based problem orientated
guideline, with the aim that a standard approach to the management of altered
consciousness, and especially the rare metabolic encephalopathies,
could be achieved to improve the outcome of these patients.
After discussion, it was agreed that this should be a modular
guideline consisting of two parts.
The first module will be limited to the management in the first
hour or so after presentation. The second module will start after first line
investigations have been processed.
The scope for module one of the guideline:
What is the aim of the
guideline (module one)?
The guideline aims to standardise and improve the management and
investigation of children presenting with an altered conscious level in the
first hour after arriving at hospital.
Who is the guideline
(module one) written for?
The intended users for this part of the guideline are first line
admitting staff in hospital (i.e. Accident and Emergency senior house officers
Which patients should be
included in the guideline (module one)?
Any paediatric patient
presenting with or developing an altered conscious level of unknown cause will
be included in the guideline.
Excluded from the guideline will be those infants presenting
immediately after birth and having not yet been discharged from hospital. This
excludes infants with neonatal encephalopathy, which encompasses a large number
of causes beyond the scope of the guideline.
Also excluded are patients above the age limit for admission to
the local paediatric department.
Patients who are being treated for a known cause of their altered conscious level will be excluded from
the guideline. This exclusion criteria was included to filter off some of the
causes of altered conscious level which are secondary to traumatic brain injury
(e.g. obvious signs of head injury) or systemic illnesses where altered
consciousness may be the end stage (e.g. airway obstruction, severe pneumonia, hypovolaemic shock). It was agreed that providing
evidence-based management guidelines for all these causes where altered
consciousness is not primarily neurological in origin would create an unusable
document in terms of size. However, it was felt that advice should be included
in the guideline as to what these causes may be, how they could be picked up in
the “Advanced Paediatric Life Support” primary survey and where guidance may be
found (e.g. NICE guidelines CG24 “Head injury”). This advice should also
address the need to re-examine the guideline if by treating an “obvious cause”
the clinical course or recovery is atypical (e.g. a head injury secondary to a
fall may have been precipitated by a primary encephalopathy).
The exact nature of the
filtering process for those patients whose altered conscious level is not
primarily neurological in origin has not been determined.
There was a discussion about other symptoms or signs which could
be included as part of the entry criteria (e.g. focal neurological signs,
seizures, altered behaviour) to ensure that the early stages of encephalopathy
are not missed. However, it was agreed that in a problem-based guideline only
one problem or presenting symptom/sign can form the entry criteria. If more
than one symptom is included then the guideline becomes unmanageable (as each
individual problem would need its own guideline) and more like a
diagnosis-based guideline (the summation of features forms a diagnosis at the
beginning of the guideline).
The definition of altered consciousness has been left open for the
time being until the systematic literature search / formal consensus process
has taken place.
What are the end points for
the guideline (module one)?
The guideline will end when first line investigations have been sent,
or are requested, and initial treatments have been started within the first
hour or so after presentation. Within the first hour very few laboratory
results will be back and the treatment options will be limited. The treatment
options available for first line staff include anticonvulsants, intubation and ventilation, dextrose infusion, antibiotics,
acyclovir, fluid and inotropic support, bicarbonate,
and mannitol. More complicated treatments are
unlikely to be available within the first hour after presentation, or would not
be started until further test results are reviewed (again unlikely to be
available within the first hour or so).
Further management decisions will therefore be covered in the
second module after further test results are available and second line
investigations have been considered.
The scope for module two of the guideline:
What is the aim of the
guideline (module two)?
The guideline aims to standardise and improve the management and
investigation of children in hospital with an altered conscious level, the
cause of which remains unknown after first line investigations have been
reviewed.
Who is the guideline
(module two) written for?
The intended users for this part of the guideline are more
experienced paediatric staff, paediatric intensivists,
and metabolic medicine physicians.
Which patients should be
included in the guideline (module two)?
All children whose altered conscious level remains undiagnosed
following review of first line investigations.
What are the end points for
the guideline (module two)?
There are many second line investigations available for this group
of patients from electroencephalograms to mitochondrial enzyme assays. Some of
these results will be available immediately and others will take weeks to come
back. Treatment options also vary from acute intracranial pressure reducing
measures to long term dietary management. The end points for the second module
of the guideline was discussed and agreed to a general principle of appropriate
tests being sent and appropriate treatment plans in place, but that the
underlying diagnosis may not have been established by the end of the guideline
(indeed “undiagnosed coma” may be the final clinical description for some of
these patients).
As well as the 2 modules of the guideline, it was suggested that
an information pack for hospital staff on how to take the various samples would
be useful, and a patient / parent information leaflet would be produced. A
programme for audit will be included in the guideline. The modular nature of
the guideline would lend itself to being developed into a care pathway, which
may be achieved by the end of the project.
After discussion it was agreed that a single
Stakeholder groups need to be identified and comments on the
guideline development invited from them. Involving stakeholder groups will
improve the rigour of the guideline development process and also alert these
groups to the existence of the guideline, thereby helping with dissemination.
Other strategies to help disseminate the guideline should include a web-site,
writing to the Royal colleges of the stakeholder groups, an article in CHERUB,
local hospital magazines/news publications, and a public open day (as NICE /
SIGN hold) half way through the development process.
Richard Bowker will write a progress
report / publicity document for circulation.
Next meeting will take place at
Minutes written up by Dr
Richard Bowker,