Pregnancy

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Pregnancy Newborn Screening Developments

• Family Origin Questionnaire (FOQ)
• Implementation in Scotland

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Background

• The use of the Family Origin Questionnaire (FOQ)
  in low prevalence areas in England is well
  established for selecting women at high risk of
  haemoglobinopathies for screening. In addition
  using these specific family origin categories
  has the advantage of
• Providing comprehensive ethnicity data on both
  the woman the babys father which is collected
  at the time of booking for antenatal care
• Allowing the laboratory to make informed
  decisions regarding the need for further
  screening for a potential at risk pregnancy and
  is particularly useful for identification of high
  risk groups for alpha thalassaemia screening
• Reducing the numbers of partners who require
  screening
• Helps the identification of antenatal samples as
  the form is easily identifiable for laboratories
  who use paper format for data collection

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Background

• The use of the FOQ has been endorsed by NICE and
  recommended for use to support all sickle cell
  and thalassaemia screening in their antenatal
  screening guidelines
• Preconception counselling (supportive listening,
  advice giving and information) and carrier
  testing should be available to all women who are
  identified as being at higher risk of
  haemoglobinopathies, using the Family Origin
  Questionnaire
• (NICE Antenatal Screening Guidelines 2008133)
• Antenatal care routine care of the healthy
  pregnant woman

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Family Origin Questionnaire

• FOQ
• Categories may be used in paper format or
  electronically
• Use is endorsed by NICE
• Information from both the woman and the babys
  father are required

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of using a FOQ (1)

• Health Professionals
• As an integral part of the booking appointment
  the FOQ helps to obtain accurate family origin
  information on both the woman and the babys
  father
• Assists with consistent data collection for
  annual returns
• Provides a significant cost savings with less
  follow up of inconclusive results required
• Reduces the screening associated anxiety of the
  women who may have inconclusive results that are
  not clinically significant

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of using a FOQ (2)

• Laboratory Staff
• Assists in identifying samples from women and
  their partners who are both at increased risk of
  alpha thalassaemia zero (possible alpha
  thalassaemia major offspring)
• Assists with the interpretation of screening
  results
• Supports issuing more accurate reports
  particularly in relation to father testing
• Assists with consistent data collection about
  family origins for annual returns
• Provides a significant cost savings with less
  father testing
• Helps with the identification of antenatal
  samples as the form is easily identifiable

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of using a FOQ (3)

• Women and their partners
• Assists women and babys father in providng more
  accurate family origin information at antenatal
  booking
• Reduces the number of fathers who require
  screening following some inconclusive results
• Supports informed choice for screening
• Reduces the anxiety associated with waiting for
  some inconclusive screening results where these
  are not clinically significant

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Evaluation of the FOQ
ETHNOS Report 2006

• The FOQ was piloted in seven low prevalence
  Trusts in England
• The overwhelming majority of stakeholders were
  very positive about using the FOQ
• The FOQ was invaluable for midwives and
  laboratory staff increased confidence in asking
  questions about family origins and highlighted
  high risk groups easily
• Despite concerns about increased workload,
  midwives were positive about the FOQ finding it
  clear, simple, easy to use, quick to complete and
  easy to integrate within the booking process
• Consultant Haematologists and biomedical
  scientists thought that FOQ made screening more
  reliable, quicker, more streamlined and less
  anxiety-inducing for parents than their previous
  screening methods

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Key Aspects of Implementation

• Training for all staff involved in the use of the
  FOQ, to ensure that relevant Health care and
  Allied Professionals are aware of the rationale
  and process for use of the FOQ prior to
  implementation. This will include
• Laboratory reception staff/phlebotomists
• Biomedical Scientists
• Midwives (community hospital based)
• IT responsible for laboratory and maternity
  services
• Primary care (where relevant)
• Access implementation guidelines from National
  Services Division/National Programme Centre
• Support is available for Education training
  from the Project Lead at NHS Education for
  Scotland

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Practical Issues for Midwives

• Provide written information about screening as
  soon as possible following confirmation of
  pregnancy (8 10 weeks)
• Offer all women screening for thalassaemia
  irrespective of family origin
• Offer women screening for sickle cell based on
  FOQ answers
• Obtain and document consent to take blood sample
• Inform women of how and when they will receive
  their screening results
• Provide written information following a carrier
  result

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Practical Issues for Laboratories

• Information on the FOQ should be used in
  conjunction with the screening algorithm
• There should be FOQ information accompanying
  every antenatal screening booking blood received
  in the lab
• Information on family origins should help the lab
  with diagnosis of high risk patients for alpha
  zero thalassaemia and make recommendations for
  associated partner screening straightforward
• The initial time factor for processing the FOQ
  form is balanced against more accurate reporting
  of results which saves time and resources
  associated with partner testing
• Important to establish robust links with
  maternity services

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Indentifying Groups at Highest Risk of
Alpha Thalassaemia Zero

• People whose origins can be traced to
• South East Asia
• China (including Hong Kong), Taiwan, Sinapore
• Thailand, Indonesia, Burma
• Cambodia, Vietnam, Laos, Philippines, Malaysia
• Southern other European
• Cyprus, Greece, Turkey
• Sardinia
• Unknown/uncertain family origins

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Using the FOQ

• Midwives need to include information on family
  origins for all women to accompany the FBC and
  haemoglobinopathy screen sample
• Complete all demographic information. If using
  triplicate forms remember there are 3 layers of
  the form! (especially if using printed labels)
• The FOQ should be completed for every woman
• Need to probe family origins for the woman and
  the babys father as far back as possible (at
  least 2 generations)
• Midwives to complete and sign the FOQ form

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Completion of FOQ Points to consider

• If woman declines, explore the reasons for this
  and document on FOQ
• There are boxes for Dont Know and Declined to
  Answer
• Midwife completing the FOQ signs the form (not
  the woman)
• Estimated date of delivery is important to assess
  gestation and link with the newborn screening
  programme
• Send a copy to the lab with the request form. A
  second copy should be added to the womans
  maternity record. (A third copy can be added to
  the hospital records if applicable)
• Laboratory to check screening declined box for
  all FOQs completed
• Remember that Partner Babys Father may not
  be the same person

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Common errors when completing
the FOQ

• Not all relevant boxes on the FOQ are ticked
• Writing too faint on duplicate copies of the FOQ
  form
• No patient labels attached to duplicate copies of
  the FOQ form
• Blood samples do not arrive in the laboratory at
  the same time as the FOQ form
• Failure to send the FOQ form with the FBC request
  form
• The FOQ has been filled in and signed by the
  woman
• Allied services unaware of the FOQ form
• Primary Care (GP, Practice Nurse)
• Phlebotomy services
• Laboratory reception staff

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(1)

• Ethnicity self defined, changeable, may include
  ancestry or nationality, may become a social norm
  or part of an individuals values and group
  identity
• Ancestry area of the world where your ancestors
  come from (also may be defined as Family Origins)
• Nationality country of birth

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(2)

• The importance of informed consent for screening
• The midwives themselves must complete and sign
  the FOQ
• Probe for at least two generations of family
  origin on each side of the family
• Accurately record women who do not know their
  family origins
• Avoid the common mistakes that can be made when
  completing the FOQ form

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(3)

• Primary Care will have a valuable role in
• Early testing of antenatal women
• Completing the Family Origin Questionnaire
• Father testing
• Communication of results
• Even if the woman has been previously screened
  still provide the FOQ information and blood
  sample the lab will decide whether or not the
  sample should be processed
• The Family Origin Questionnaire should be used
  for every woman the babys father when taking
  the maternal history

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Resources

• NSD National Guidance
• Checklist for implementation
• PowerPoint Presentation
• Resource Portfolio (training materials)
• Laboratory Handbook
• Screening Algorithm
• www.pnsd.scot.nhs.uk
• www.sct.screening.nhs.uk

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When You Are
Ready!STA START!