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Khalid,
Thank you for a prompt reply.
I am talking at a local meeting with paediatric surgery, neonatal medicine and foetal medicine (prenatal and post natal management of CCAM. Obviously it is not a terribly common problem, one of a few congenital lung conditions and there is also variation in management (symptoms/malignancy risk/personal opinion of individual surgeons).
For the purpose of the local meeting, I really just wanted a flavour of what is done outside Southampton (really as an illustration). I have a load of data from our unit and have spent some time doing all the appropriate background research.
However, I am expanding my interest with regards to a more formal communication with other centres. Obviously, that will be done very officially, with Mr Burge who I am doing this work with. I intend to send out a formal questionnaire within the next few weeks (I hope).
Since my previous training was in cardiothoracic surgery (have a CCST in it so I did a serious amount of thoracic surgery around the country), I have already made contact with a couple of dozen adult cardiothoracic surgery consultants who I know personally (helped a huge deal that I have worked with them at a pretty senior level and therefore know who to talk to, and know I will be taken seriously too).
Suffice to say, I wish to get as much information as I can (and hopefully get something for BAPS 2006).
If you could offer a flavour of what you do in your centre that would be great (operate on all, do 'x' number per year, no malignancies etc, that would be great).
Clearly, I shall follow the appropriate channels for more detailed information.
Best wishes,
Vivien McNamara
----- Original Message -----From: Khalid SharifSent: Friday, November 04, 2005 7:29 AMSubject: Re: [paediatricsurgerytrainees] CCAM
--- vivienmcnamara <vivien@...>
wrote:
Dear Vivien McNamara
Thank you very much for asking information about CCAM.
May I ask the aim and objective of these information
collection as my consultant Mr.Parikh do all these
cases regularly and has a large collection of cases. I
have disscussed this with him and he feels that these
information should be collected only on Consultants
request. May I therefore request you to ask your
consultant to write to him in Birmingham. Thansk
Khalid
---------------------------------
Hi.
I am after some information regarding the managment of
CCAM's
(congenital cystic adenomatoid malformation) in the
UK.
I would really appreciate if each trainee could ask
their bosses the
following questions (unless they know the answers
already!). I hope
this will give me a pretty good idea as what is done
in every
paedaitric surgery unit in the UK.
1. Is there a local policy for following up a baby
after a prenatal
scan suggests a CCAM (or other pulmonary abnormality)?
Frequency and
timing of scans?
2. Does your unit undertake antenatal counselling for
these
pregnancies? And if so, do you know what information
is given to the
parents?
3. What is the policy once a baby is born who has had
a prenatal
diagnosis of a possible CCAM? Further scans, type
(CxR, CT), timing?
4. What is done if the baby is asymptomatic? Scans,
paediatric
surgery follow-up? Do you discuss the topic of
malignancy with the
parents?
5. If there has not been an antenatal diagnosis (no
scan or missed)
and there is then a postnatal diagnosis (respiratory
distress etc),
what does your unit do then?
6. Do you know of any babies who have had surgery that
you have been
involved with - age, presentation, surgery, outcome?
I am trying to get a picture of what is done
throughout the country
and suspect it is very varied.
I would appreciate any replies ASAP - I have been
'off-line' for a
while as my computer exploded!
In you reply, could you state your unit and if there
is a difference
between consultants - 'who does what' would be
interesting.
Thanks. I know you have little free time for
emails/surveys and
really should be spending time drinking/shopping or
eating chocolate
but some prompt feedback would be great.
Cheers,
Vivien McNamara
Southampton.
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