Universal Newborn Hearing Screening in Belgium
Update FEB 2006 by Prof PJ
Govaerts, the Eargroup, Antwerp-Deurne, Belgium.
Geo-politics
Belgium is
a west-European country with approx. 10.300.000 inhabitants. It is a federal country with 3
semi-autonomous regions, Flanders (6.000.000 inhab), Wallonia (3.300.000 inhab)
and the Capital Region of Brussels (1.000.000 inhab). Medical prevention belongs to the regional responsibilities. In Wallonia and Brussels no universal
neonatal hearing screening programs exist. Efforts are being made to implement them in the near future
though.
History of UNHS in
Flanders
In Flanders
neonatal hearing screening was started by the Eargroup team in Antwerp under
Dr. PJ Govaerts in 1993. After a
pilot phase with several modifications to the techniques being used, the
regional Well Baby Clinics (“Kind & Gezin”) adopted the idea and launched a
universal program in Flanders in 1998, which became fully operational in
1999. In Flanders, the annual
birth rate is approx 60.000. Screening
is done at the Well baby centres within the first 2 months after birth by means
of automated ABR (ALGO®). In case
of unilateral or bilateral fail, a second test is done 1-2 weeks later. In case of unilateral or bilateral fail
on this test, the child is referred to one of a list of “centres of reference”. These centres are selected on the basis
of geographical and political reasons.
No quality criteria apply.
The centres are bound to follow a diagnostic protocol as defined in a
mutual contract between the Well Baby Organisation and the centre. In case of confirmation of the hearing
loss, the child is referred to an auditory rehab centre for hearing aid fitting
and family guidance.
Outcome
of UNHS in Flanders
In 2003 and
2004 the UNHS tested 90,7 – 93,5% of the newborns (ref: annual reports Kind &
Gezin). NICU children
are not being tested! An
additional 3% of the newborns were tested in and by the maternities and approx
2% of children refused to undergo the screening. The first test was done during the first month of life
in approx 70% of the cases and during the second month in another 27-28% of
cases. After the first test,
approx 3,5% were enrolled for a second test. After the second test, approx 3 per thousand newborns remain
to be referred for diagnostic work-up.
Approximately 1,0 to 1,2 per thousand are reported to have an
ABR-confirmed bilateral hearing loss with thresholds above 40 dB.
What have we learnt?
- Do not re-discover the wheel
!
When
Karl White launched his UNHS program in Rhode Island in 1990, it became clear
that the OAE-device that was developed by Kemp et al in the late 80’s would
allow for the first time ever to really screen the hearing of all newborns
with good test specificity and sensitivity and above all with an acceptable
price. Soon after receiving the
first reports from Karl White, we decided to invite him to Belgium to teach us
how to implement UNHS. He came
over several times and his teaching was of invaluable importance to speed up
things in Flanders. We now see
that many countries in Europe and abroad still hesitate to launch UNHS programs
because they first want to repeat all the experiments and operational
comparisons that were already done 10 years ago and that are well documented. This loss of time is unjustified.
2. Work at
2 levels
We believe that for a
UNHS program to succeed, two distinct levels have to be well defined: 1) the
central (regional or national) level where the responsibilities for the
epidemiology, the monitoring and the “trace and chase” function have to be
situated and 2) the local (hospital or well-baby centre) level where the
operational competences and responsibilities are situated. Both levels are complementary and have
different tasks. The central level
will never be able to execute the individual screening and to cover
sufficiently high numbers. The
central level should keep the database, should define and monitor the quality
control and should organize task forces to really trace and chase the babies
that are at risk for being lost to follow up. The local level should execute the screening, inform the
parents, and stay motivated.
3. Be sure
to have a solid “after screen program”
In Flanders
we are proud of having a UNHS since 1998, but we still experience major
difficulties in the quality of the after-screen. After a double fail on the screen, babies are referred for
diagnostic work-up. Already at the
moment of referral, parents need expert counselling. Only expert counselling will reassure them that everything
is under control.
This is essential since parents at that moment have lost their hope and
yet, after so many efforts, nobody tells them whether there is a hearing loss
or not. They have plenty of
questions that need an answer at that very moment. Otherwise, the parents will also loose their thrust and
compliance. The diagnostic workup
should be done by competent people.
Too much is at stake to allow compromises of whatever kind. In Flanders parents are referred to a
limited list of “centres of excellence” but this list is constructed on
political grounds without any qualitative criterion. This is a disaster.
Objective criteria should be established that check not only for eligibility
as centre of excellence, but that also enable continuous monitoring of the
existing centres. After a proper
diagnostic workup, children with a hearing loss need family guidance, hearing
aid fitting and (re-)habilitation.
It takes time for specialized rehab centres to gain experience in these
very young kids, but also in this domain, excellence may exist, is required and
should be monitored. Here again,
we have learnt how difficult it is to establish criteria of good practise and
we still have much work to do.
4. Do not
compromise on the standards
Fortunately
many people who are involved in UNHS, are very committed and they really want
to do the best. But not many
health care professionals are used to manage large quantities of subjects and
data like in screening programs.
It is difficult to keep the same high quality standards that we are used
to use in individual clinical practise when we are suddenly dealing with large
population data. Yet it is crucial
not to compromise on these standards.
For instance, if
epidemiology tells us that the prevalence of bilateral sensorineural
hearing loss is 1,2 per thousand newborns, it is not correct to give your UNHS
program good marks when it finds 1,2 children per thousand with a hearing loss,
not mentioning that also unilateral losses and conductive losses were included
in its figures.
5. Prodigious
children have many fathers
The fate of
pioneers is to face much opposition as long as their project is immature and
the outcome not yet proven. Once
their child appears to be prodigious, many are those who claim paternity J.
Conclusion
In
conclusion, Flanders is the first region outside the USA with 60.000 newborns a
year and with an operational UNHS program. The coverage is over 90% and thanks to some local
initiatives, it is around 95%. The
screen specificity seems to be high (99,8% with 0,2% false alarms). The sensitivity is not really known
because no robust epidemiological figures are known about the prevalence of
congenital hearing loss. Assuming
a prevalence of 0,12%, the sensitivity is between 83 and 100%. Assuming a prevalence of 2% however,
which has been found in well-controlled maternity based studies, the
sensitivity is between 50 and 60%.
The use of automated ABR is arguable mainly because of the high cost of
the disposables. The selection of
centres of reference on geographical and political grounds rather than on
qualitative criteria is even more problematic. The reported hearing losses are not well documented and the
type of deafness (sensorineural or conductive) is not reported. The lack of transparency of the Well
Baby Organisation renders scientific analysis of these data cumbersome.
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French