Organisation and results of neonatal hearing screening in the Wallonia-Brussels Federation

Centre d’Epidémiologie Périnatale CEpiP asbl

ROYAL BELGIAN SOCIETY FOR EAR, NOSE AND THROAT, HEAD AND NECK SURGERY

ANNUAL REPORT: NEONATAL HEARING SCREENING

Bénédicte VosUNHS Coordinator 16 November 2013

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Context

• Permanent childhood hearing loss:– Public health concern– Prevalence (significant bilateral HL)*

• Well-baby nursery population: 1-3‰ • NICU population: 2-4%

– Consequences• Cognition, socio-emotional development → appropriate intervention before 6 months of age

– International recommendations → Universal newborn hearing screening (UNHS)

*American Academy of Pediatrics, 1999; ANAES, 1999

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Context

• Wallonia-Brussels Federation:– Before 2006:

No coordinated UNHS– November 2006:

Protocol released (organisation of the program)Maternity hospitals in Brussels & WalloniaParticipation: voluntary basis

Objective: To present the organisation and results of the UNHS program (FWB) and its evolution since implementation (2007-2011)

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Protocol

Organisation: only guidelines Hospitals: free to design its own approach

Screening Diagnosis

$ in 2011* AOAE: automated otoacoustic emissions

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Organisation

Organisation: only guidelines Hospitals: free to design its own approach

Different « patterns »: - Screeners:

from maternity ward or ENT ward (nurses, midwives, audiologists,…)

- Days: from 2 to 7 days a week

« Screeners » an « days » are related 7/7 days: do not decrease untested or

lost to follow up children

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Risk factors in the UNHS-FWB

Risk factors related tothe prenatal period the peri- and postnatal period

- Family history of hereditary HL- Consanguinity (1st degree)- In-utero infection :

• cytomegalovirus• toxoplasmosis• herpes• rubella• syphilis

- Poisoning (alcohol, drugs) by the mother during pregnancy

- Apgar score of 0-6 at 5 minutes- Gestational age < 36 weeks and/or low

birth weight (< 1500 gr.)- NICU admission ≥ 5 days- Exposure to ototoxic medications - Hyperbilirubinaemia at level requiring

exchange transfusion- Assisted ventilation lasting ≥24 hours - Head or neck anomalies and by

extension each syndrome known to include a HL- Neurological or endocrine disease

Data collection« Paper »:Collected by 3 neonatal screening c.- AOAE:

backside of the PKU form- ABR (or AOAE after discharge):

specific forms« Computer »:Coordinating agencyInternet connection

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Recall system

• Untested - abnormal results → recalled for outpatient testing

– « paper » transmission:• Hospitals contact the parents, 3 times

– « computer » transmission• Coordinating agency sends 2 letters to the parents (day 15 & 30);

1 letter to the hospital (day 45)

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Funding

• Screening– FWB → hospital: 5 €/child– Parents → hospital: ≤10 €/child;

Reimbursed by most social security organisations

• Diagnosis: Federal Sickness Fund

• Data collection: FWB

• Devices & users training: Hospitals

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Data analysis

• Inclusion criterion:– Implementation of the UNHS program in the hospital– Dates of birth: 1/1/2007 – 31/12/2011

• Comparison of the results– By year of birth

(≠ date of the test)

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Participation to the program

• Hospitals: – 1/1/2007: 23 hospitals– during 2007: +19– end of 2011: 43 → all hospitals of the FWB,

except 3

• Newborns (participating hospitals):

2007 2008 2009 2010 20110

100002000030000400005000060000

2007-2011:239722 newborns

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Eligible population

2007 2008 2009 2010 20110.00.51.01.52.02.53.0

"Outside"Refusal

Percentage >58% → Kind & Gezin

20072008

20092010

20110

100002000030000400005000060000

≥1 risk fact. No risk fact.

UNHS Population

2007-2008: +22%

2009-2011: stabilisation

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Risk factors for HL

2007 2008 2009 2010 20110.0

2.0

4.0

6.0

8.0

10.0

≥1 risk factor(s)

Percentage Proportion of RF:

2007-2011: globally, 6.9%doubled between 2007-

2011

- ↗ data quality (communication of the information)

- Effect of the training (pediatricians)?

Literature: 8-10%

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2007 2008 2009 2010 201140.0

45.0

50.0

55.0

60.0

65.0

70.0

75.0

80.0

85.0

90.0

95.0

100.0

Coverage test 1

Years

Perc

enta

ge

1st screening test coverage:< 90% < 95%decrease in 2011: due to an absence of transmission of the results (≠ tests not performed)

Recommandation:> 95 %

Untested

« Screening » groupCoverage rate: 1st test

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« Screening » group‘Pass’ results: 2nd test

2007 2008 2009 2010 201140.0

45.0

50.0

55.0

60.0

65.0

70.0

75.0

80.0

85.0

90.0

95.0

100.0

Pass results test1

Years

Perc

enta

ge

Results of the 1st screening test:85% 88%

Learning curve?

2nd test needed

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« Screening » groupCoverage rate & ‘pass’ results : 2nd test

2007 2008 2009 2010 201140.0

45.0

50.0

55.0

60.0

65.0

70.0

75.0

80.0

85.0

90.0

95.0

100.0

Coverage test 2Pass results test2

Years

Perc

enta

ge

Referred for audiological assessment:2.4%

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« Screening » groupCoverage rate: follow up

2007 2008 2009 2010 201140.0

45.0

50.0

55.0

60.0

65.0

70.0

75.0

80.0

85.0

90.0

95.0

100.0

Coverage follow up

Years

Perc

enta

ge

Coverage of the follow up (newborns referred to ENT):45% 70%

Lack in data transmission? (= lost to documentation)

Recommendation: >95%

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Newborns with ≥1 RF

2007 2008 2009 2010 20110.0

2.0

4.0

6.0

8.0

Untested

Perc

enta

ge

2007-2009: improvement

2010-2011: no systematic data transmission?

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Hearing status

Hearing status, by year of birth (2007-2011) and by presence or not of risk factor(s)

2007 2008 2009 2010 2011 2007 2008 2009 2010 201175.0

80.0

85.0

90.0

95.0

100.0

Hearing lossUntestedLost to follow upNormal hearing

Perc

enta

ge

Without risk factor ≥ 1 risk factor(s)

Prevalence HL (2007-2011): 26.33‰

Prevalence HL (2007-2011): 1.46‰

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Hearing impairments

(n=233397)Unilateral &

BilateralUnilateral Bilateral

n ‰ n ‰ n ‰ PerceptiveAuditory neuropathyConductive (temporary)Conductive (permanent)Conductive (unspecified)Hearing loss - Unspecified

743124

3197

26171222

3.180.530.010.840.110.730.95

35741

0105

14101

96

1.530.180.000.450.060.430.41

38683

3921270

126

1.650.360.010.390.050.300.54

Data quality:has to be improved

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Conclusion

• Comparison to other programs– Coverage rates– Lost to follow up– Prevalence of HL

• Data quality

• Data from rehabilitation services: – Missing → global evaluation of the program is impossible

Thank you for your attention

Bénédicte Vos - UNHS coordinator Centre de référence pour le Programme de dépistage néonatal de la surdité Centre d’Epidémiologie Périnatale CEpiP asbl

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This program is funded by the Fédération Wallonie-Bruxelles

and supported by a scientific working group composed by Drs N. Deggouj, P. Deltenre, L. Demanez, A. Doyen, P. Eymael, A-L. Mansbach, N. Melice

Scientific promoteur: Dr A. Leveque

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UNHS-FWB has existed for 5 years…

Main difficulties in the implementation: beginning

Remaining difficulties: • Early discharge of the infant• Increase of paperwork workload• Lack of identification of high risk newborns • Lack of transmission of the results• Computer data transmission:

– Technical difficulties, but better transmission of the results