Congenital cytomegalovirus screening and treatment practices and data
Dear North West Anglia NHS Foundation Trust,
The purpose of this FOI request is to ascertain your Trust’s approach to screening for and treating congenital cytomegalovirus (cCMV).
The questions have been designed so that they can be answered within the limits (on time, cost, type of information etc.) set out in the Freedom of Information Act and the Information Commissioner’s Guidelines. If it is not possible to provide the exact information requested, please supply the underlying information in narrative form or whichever format you have available.
Definitions of acronyms and terms used in the FOI request:
CMV: cytomegalovirus
cCMV: congenital cytomegalovirus
SNHL: sensorineural hearing loss
‘Practices’ refers to any standard operating procedures or clinical protocols, guidelines, practices or pathways.
‘Information’ refers to any recorded information required to be disclosed in response to requests under the Freedom of Information Act.
If different hospitals or services within your Trust have different Practices or data availability, please provide separate Information or data for each hospital or service (indicating clearly which hospital or service the Information relates to).
Q1. Please provide copies of any Information containing or evidencing Practices used within your Trust whereby newborns who are referred to audiology following their newborn hearing screening test, or newborns/children who demonstrate abnormal hearing at a later stage, are tested for cCMV. Such Practices could include, but are not limited to, early cCMV detection pathways whereby newborns are tested at point of referral to audiology from the newborn hearing screening programme. Please include details about the intended timescales for testing, carrying out tests and returning test results, if this information is recorded.
Q2. If your Trust does employ Practices whereby newborns/children with abnormal hearing are tested for cCMV, please indicate at which stage samples are taken (you may select more than one):
❏ By the newborn hearing screener at the point of referral
❏ By the audiologist at the first appointment after babies have been referred from the newborn hearing screen
❏ By the audiologist at detection of SNHL in a baby referred from the newborn hearing screen
❏ By another healthcare professional (not an audiologist) following detection of SNHL in a baby referred from the newborn hearing screen
❏ At detection of SNHL in older babies and children (i.e. after the newborn hearing screening and testing period)
❏ Unknown
❏ Other, please provide details:
Q3. If your Trust does employ Practices whereby newborns/children with abnormal hearing are tested for cCMV, please indicate what type of sample is taken (you may select more than one):
❏ Saliva swab
❏ Urine
❏ Blood test for the infant
❏ Blood test for the mother
❏ Infant blood spot (Guthrie) card testing
❏ Unknown
❏ Other, please provide details:
Q4. Please provide copies of any Information containing or evidencing Practices used within your Trust whereby children are tested for cCMV as part of investigations of symptoms (in either the mother or child) that are unrelated to hearing. These could include:
Maternal symptoms of CMV (flu-like symptoms)
Symptoms of congenital infection identified before or after birth, such as:
• Antenatal abnormalities e.g. on ultrasound scan
• Characteristic rashes caused by cCMV (petechiae or blueberry muffin rash)
• Intrauterine Growth Restriction
• Microcephaly
• Jaundice
• Hepatosplenomegaly
• Neonatal visual signs/symptoms
• Neonatal seizures
Symptoms of congenital infection in older children, such as:
• Neurodevelopmental delays
• Special educational needs and disabilities (e.g. autism, ADHD)
• Cerebral palsy
• Seizures
• Visual or sensory impairment
Q5. Please provide copies of any Information containing or evidencing Practices used within your Trust following a diagnosis of cCMV in a child. This could include, but is not limited to:
• Information about any Practices involving the prescribing of antiviral treatments
• Details of the department(s) that the child would be referred to
Questions 6-9 relate to the provision of data for a specific five-year period. If you do not hold data for this time period, please supply data for any period for which you have available data (preferably a recent five-year period) and specify the beginning and end dates. If the answer to any question is between 1 and 5 (and therefore the true figure cannot be shared in accordance with Section 40 of the Freedom of Information Act), please indicate this by giving the answer “<5”. Please also indicate if the relevant hospitals or services within your Trust have changed during this period.
Q6. Between 1 January 2018 and 31 December 2022, how many children were diagnosed with cCMV within 28 days of birth, within your Trust? This should include children born outside of your Trust who were diagnosed by services within your Trust.
Q7. Of the children who were diagnosed with cCMV within 28 days of birth in this time period (Q6), how many:
a. Previously had a newborn hearing screening test
b. Had been referred to audiology following their newborn hearing screening test
c. Were given antiviral treatment for cCMV following diagnosis
Q8. Between 1 January 2018 and 31 December 2022, how many children were diagnosed with cCMV between 28 days and 18 years of age, within your Trust? This should include children born outside of your Trust who were diagnosed by services within your Trust.
Q9. Of the children who were diagnosed with cCMV between 28 days and 18 years of age in this time period (Q8), how many:
a. Previously had a newborn hearing screening test
b. Had been referred to audiology following their newborn hearing screening test
c. Were given antiviral treatment for cCMV following diagnosis
Yours faithfully,
Alice Fletcher-Etherington
CMV Action
CMV Action is the only UK charity offering advice and support to families affected by congenital CMV (cCMV). For more information: https://cmvaction.org.uk/.
Dear Alice
Reference Number FOI 2024 - 020
Thank you for your request for information about North West Anglia NHS
Foundation Trust.
We anticipate being able to respond within the specified timescale.
In the meantime if you have any questions regarding this request please
contact us directly quoting the reference number above.
North West Anglia NHS Foundation Trust comprises of Peterborough City
Hospital, Hinchingbrooke Hospital and Stamford & Rutland Hospital. The
Trust also provides community clinics at Princess of Wales Hospital in
Ely, Doddington Hospital and North Cambs Hospital in Wisbech. Further
information is available via our website [1]www.nwangliaft.nhs.uk.
Any future Freedom of Information requests should be addressed to North
West Anglia NHS Foundation Trust using the email address below.
FOI Team
North West Anglia NHS Foundation Trust
Email: [2][North West Anglia NHS Foundation Trust request email]
[3]www.nwangliaft.nhs.uk
This message may contain legally privileged, confidential, commercial or
patient information intended to be for the use of the individual (s) or
entity named above. If you are not the intended recipient, please advise
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or copying of this message is strictly prohibited.
Ref: FOI/2024/020
Dear Alice
Thank you for your recent enquiry under the Freedom of Information Act.
Please find your response detailed below.
Requesters Questions and Trust Response:
Q1. Please provide copies of any Information containing or evidencing
Practices used within your Trust whereby newborns who are referred to
audiology following their newborn hearing screening test, or
newborns/children who demonstrate abnormal hearing at a later stage, are
tested for cCMV. Such Practices could include, but are not limited to,
early cCMV detection pathways whereby newborns are tested at point of
referral to audiology from the newborn hearing screening programme. Please
include details about the intended timescales for testing, carrying out
tests and returning test results, if this information is recorded.
As per the Clinical Guideline: Diagnosis and Management of Congenital
Cytomegalovirus. This is a available in the public domain via the East of
England Neonatal, Paediatric Critical Care and Surgery in Children ODNs
website:
[1]https://www.eoeneonatalpccsicnetwork.nhs...
Q2. If your Trust does employ Practices whereby newborns/children with
abnormal hearing are tested for cCMV, please indicate at which stage
samples are taken (you may select more than one):
❏ By the newborn hearing screener at the point of referral
Q3. If your Trust does employ Practices whereby newborns/children with
abnormal hearing are tested for cCMV, please indicate what type of sample
is taken (you may select more than one):
❏ Saliva swab
Q4. Please provide copies of any Information containing or evidencing
Practices used within your Trust whereby children are tested for cCMV as
part of investigations of symptoms (in either the mother or child) that
are unrelated to hearing. These could include:
Maternal symptoms of CMV (flu-like symptoms) Symptoms of congenital
infection identified before or after birth, such as:
• Antenatal abnormalities e.g. on ultrasound scan
• Characteristic rashes caused by cCMV (petechiae or blueberry
muffin rash)
• Intrauterine Growth Restriction
• Microcephaly
• Jaundice
• Hepatosplenomegaly
• Neonatal visual signs/symptoms
• Neonatal seizures
This would be taken as part of TORCH screening of these infant. There is
not a guideline for this as this forms part of clinical knowledge.
Symptoms of congenital infection in older children, such as:
• Neurodevelopmental delays
• Special educational needs and disabilities (e.g. autism, ADHD)
• Cerebral palsy
• Seizures
• Visual or sensory impairment
These children are looked after by Community Paediatrics and they should
be doing these investigations.
Q5. Please provide copies of any Information containing or evidencing
Practices used within your Trust following a diagnosis of cCMV in a child.
This could include, but is not limited to:
• Information about any Practices involving the prescribing of
antiviral treatments
• Details of the department(s) that the child would be referred to
As per guideline mentioned in Q1.
Questions 6-9 relate to the provision of data for a specific five-year
period. If you do not hold data for this time period, please supply data
for any period for which you have available data (preferably a recent
five-year period) and specify the beginning and end dates. If the answer
to any question is between 1 and 5 (and therefore the true figure cannot
be shared in accordance with Section 40 of the Freedom of Information
Act), please indicate this by giving the answer “<5”. Please also indicate
if the relevant hospitals or services within your Trust have changed
during this period.
Q6. Between 1 January 2018 and 31 December 2022, how many children were
diagnosed with cCMV within 28 days of birth, within your Trust? This
should include children born outside of your Trust who were diagnosed by
services within your Trust.
<5
Q7. Of the children who were diagnosed with cCMV within 28 days of birth
in this time period (Q6), how many:
a. Previously had a newborn hearing screening test
<5
b. Had been referred to audiology following their newborn hearing
screening test
<5
c. Were given antiviral treatment for cCMV following diagnosis
<5
Q8. Between 1 January 2018 and 31 December 2022, how many children were
diagnosed with cCMV between 28 days and 18 years of age, within your
Trust? This should include children born outside of your Trust who were
diagnosed by services within your Trust.
This information is not held.
Q9. Of the children who were diagnosed with cCMV between 28 days and 18
years of age in this time period (Q8), how many:
a. Previously had a newborn hearing screening test
b. Had been referred to audiology following their newborn hearing
screening test
c. Were given antiviral treatment for cCMV following diagnosis
This information is not held.
Please note that this response has been provided within the 20 working day
timeframe as stipulated in the Act.
North West Anglia NHS Foundation Trust comprises of Peterborough City
Hospital, Hinchingbrooke Hospital and Stamford & Rutland Hospital. The
Trust also provides community clinics at Princess of Wales Hospital in
Ely, Doddington Hospital and North Cambs Hospital in Wisbech. Further
information is available via our website [2]www.nwangliaft.nhs.uk.
If you disagree with our decision or are dissatisfied with how we have
dealt with your request in the first instance you may contact me on the
following email address [3][North West Anglia NHS Foundation Trust request email] to request an
internal review.
Should you remain dissatisfied with the outcome you have a right under s50
of the Freedom of Information Act to appeal against the decision by
contacting:
Information Commissioner
Wycliffe House
Water Lane
Wilmslow
SK9 5AF
Phone: 0303 123 1113
Email: [4][email address]
Yours sincerely
FOI Team
North West Anglia NHS Foundation Trust
Email: [5][North West Anglia NHS Foundation Trust request email]
[6]www.nwangliaft.nhs.uk
This message may contain legally privileged, confidential, commercial or
patient information intended to be for the use of the individual (s) or
entity named above. If you are not the intended recipient, please advise
the sender and destroy all copies of the message as you would any other
confidential waste (shredding or incineration for printed-copies, deletion
for electronic copies). Please note that any dissemination, distribution
or copying of this message is strictly prohibited.
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