1. Organisation and results of neonatal hearing screening in the Wallonia-Brussels Federation Centre d’Epidémiologie Périnatale CEpiP asbl R OYAL B ELGIAN S OCIETY FOR E AR, N OSE AND T HROAT, H EAD AND N ECK S URGERY A NNUAL REPORT : NEONATAL HEARING SCREENING Bénédicte Vos UNHS Coordinator 16 November 2013

2. 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 2

3. Context Wallonia-Brussels Federation: – Before 2006: No coordinated UNHS – November 2006: Protocol released (organisation of the program) Maternity hospitals in Brussels & Wallonia Participation: voluntary basis Objective: To present the organisation and results of the UNHS program (FWB) and its evolution since implementation (2007-2011) 3

4. Protocol Organisation: only guidelines Hospitals: free to design its own approach Screening Diagnosis 4

5. Organisation Organisation: only guidelines Hospitals: free to design its own approach 5 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

6. Risk factors in the UNHS-FWB Risk factors related to the prenatal periodthe peri- and postnatal period - Family history of hereditary HL - Consanguinity (1 st 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 6

7. Data collection « Paper »: Collected by 3 neonatal screening c. -AOAE: backside of the PKU form -ABR (or AOAE after discharge) : specific forms « Computer »: Coordinating agency Internet connection 7

8. 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) 8

9. 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 9

10. 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) 10

11. 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): 2007-2011: 239722 newborns 11

12. Eligible population >58% → Kind & Gezin UNHS Population 2007-2008: +22% 2009-2011: stabilisation 12

13. Risk factors for HL 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% 13

14. 1 st screening test coverage: < 90%  < 95% decrease in 2011: due to an absence of transmission of the results (≠ tests not performed) Recommandation: > 95 % Untested « Screening » group Coverage rate: 1 st test 14

15. « Screening » group ‘Pass’ results: 2 nd test 15

16. « Screening » group Coverage rate & ‘pass’ results : 2 nd test 16

17. « Screening » group Coverage rate: follow up Coverage of the follow up (newborns referred to ENT): 45%  70% Lack in data transmission? (= lost to documentation) Recommendation: >95% 17

18. Newborns with ≥1 RF 18 2007-2009: improvement 2010-2011: no systematic data transmission?

19. Hearing status Hearing status, by year of birth (2007-2011) and by presence or not of risk factor(s) Prevalence HL (2007-2011): 26.33‰ Prevalence HL (2007-2011): 1.46‰ 19

20. Hearing impairments (n=233397) Unilateral & Bilateral UnilateralBilateral n‰n‰n‰ Perceptive Auditory neuropathy Conductive (temporary) Conductive (permanent) Conductive (unspecified) Hearing loss - Unspecified 743 124 3 197 26 171 222 3.18 0.53 0.01 0.84 0.11 0.73 0.95 357 41 0 105 14 101 96 1.53 0.18 0.00 0.45 0.06 0.43 0.41 386 83 3 92 12 70 126 1.65 0.36 0.01 0.39 0.05 0.30 0.54 20 Data quality: has to be improved

21. 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 21

22. 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 22 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

23. « Screening » group Coverage rates (1 st, 2 nd test & follow up) and ‘pass’ results (1 st & 2 nd test) 23

24. 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 24