Pregnancy & Newborn Screening
Developments
Family Origin Questionnaire (FOQ)
Implementation in Scotland
Background
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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 baby’s
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
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 2008:133)
Antenatal care: routine care of the healthy pregnant woman
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 baby’s
father are required
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 baby’s 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
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
of using a FOQ (3)
Women and their partners:
• Assists women and baby’s 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
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 anxietyinducing for parents than their previous screening methods
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:
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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
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
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
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
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 baby’s
father as far back as possible (at least 2 generations)
• Midwives to complete and sign the FOQ form
Completion of FOQ: Points to consider
• If woman declines, explore the reasons for this and document on
FOQ
• There are boxes for ‘Don’t 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 woman’s 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’ & ‘Baby’s Father’ may not be the same
person
Common errors when
completing the FOQ
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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
(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
(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
(3)
• Primary Care will have a valuable role in:
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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 baby’s father when taking the maternal history
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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