Latin America calls loud for UNHS

Universal Newborn Hearing Screening (UNHS) means deafness in the newborn can be detected in time for patients to undergo correct treatment and rehabilitation. The 50 statements of the «Latin American Consensus on UNHS» pave the way towards bringing about a programme for the whole region.

The years 2007-2008 saw Mexico set up a structure for a “Newborn Screening and Early Treatment” programme (TANIT), which was put into practice in 2009. Its aim was, by 2012, to screen 90 percent of babies born in Secretariat of Health institutions, and 80 percent of Health Sector institutions, including all those covered by state social security.

Dr. Berruecos explains: “an executive report released in 2012 by the National Council for the Disabled (CONADIS), revealed that from 2010 to 2012 1.5m newborn were screened and that coverage amounted to 63 percent. However, over the same three-year period around 3.3 million babies were born in Secretariat of Health hospitals, so the coverage would be 45.4%, and not the 90% targeted by the programme. Furthermore, the goal of 80% for institutions across the country is far from being achieved, since this amounts to only 25% coverage. These results can be considered disappointing, but the fact that programme exists is an important advance since it shows intention and the political will to carry it out.”

One successful case in the Aztec country is the General Hospital of Mexico: the programme was consolidated in this centre from 2003 and reached coverage levels of 97% amongst normal patients and 100% of high-risk newborn; “a good screening programme should cover 95 percent of all newborn. Although the ideal figure would be 100%, one must bear in mind that some parents reject the test, while circumstances related to hospital protocols can impede universal application,” points out Berruecos, who led the UNHS programme at that hospital. Many institutions across Mexico now seek to emulate the success of the UNHS scheme applied at the General Hospital of Mexico.

Latin American Consensus on UNHS

Hearing screening tests are cheap, and their results have a huge impact on patients’ quality of life. For every 10,000 newborn babies, tests detect 2.5 cases of hypothryroidism, 5 cases of spina bifida, 11 cases of Down syndrome, and 30 of hypoacusis and deafness. “The identification, diagnosis, and early treatment of hearing loss means taking advantage of the great cerebral plasticity of children and allowing them to have practically normal lives. In this age, early detection should be a universal routine procedure,” says Berruecos.

In order to support joint actions across Latin America to increase coverage and the growth in awareness of the benefits of UNHS, leading to the universalisation of its application in the region, different specialists created the “Latin American Consensus on UNHS”. Since 2007, this working group has split into three large areas covering: South America; Central America and the Caribbean; and North America.

Pedro Berruecos was the coordinator of this group of specialists who, through 50 statements managed to build in international criteria on UNHS to achieve consensus: “these 50 statements grouped together in a general way are divided into subjects thus:

1) basic principles

2) justification of UNHS

3) objectives, indicators and goals

4) methodology and results analysis

5) follow-up

6) professional,ethical, and institutional commitments”

the expert detailed.

The 50 declarations which make up the Consensus constitute the way forward for the development of UNHS programmes in Latin America. Despite the particularities of each nation, the document reports on the minimum requirements for applying tests. “In Latin America, there are many laws which embrace UNHS as obligatory and which represent a starting point for something which wasn’t even dreamed about 10 or 15 years ago. We can say that the places most advanced in this field are: Mexico, Argentina, Brazil, Chile, Colombia, and Puerto Rico,” explains Berruecos.

Some Latin American countries, says the specialist, must boost and improve their newborn screening programmes, while others still need to initiate them. “The Consensus provides intellectual force and heavyweight reasons to support those involved in this field so that authorities will make the decisions that are required. Ignorance is now no excuse. The facts are laid out. This obligation falls to many people, but certainly much more to those working in hearing.

It is time to bring sounds to those who have never heard them and, with this, the magic of words through which they can acquire the best of human knowledge,” concluded Dr. Pedro Berruecos.

"The 50 key statements"

I. BASIC PRINCIPLES

1. Hearing difficulties constitute a major Public Health problem.

2. It is necessary to be understand the natural history of otological pathologies and hearing difficulties from a medical viewpoint.

3. Knowledge of prevention levels for deafness obliges general practitioners, paediatricians, and other specialists to consider mere suspicion on the part of parents that their children may have a hearing difficulty to be total justification for the immediate undertaking of special examinations.

4. TAN must be applied early and considered as a continual process, since it creates the absolute necessity for assessment, diagnosis, and treatment programmes.

5. In order to guarantee correct follow-up of integrated Hearing Health programmes, deafness - the identification of which is the main objective of TAN- must be necessarily present at birth, not be of later appearance, and must be able to be recognised very early on, independently of parents needing to be aware of any kind of risk of hearing loss affecting their children.

6. TAN methods must be accessible, quick, non-invasive, painless, simple, of high sensitivity and specificity, and must conform to a positive cost/benefit ratio, allowing for the identification of any hearing condition before a child reaches two months of age.

7. TAN is to be carried out only with the prior informed consent of parents, or at least one of them, and must always involve greater benefits than eventual negative results, such as those which often derive from false-positives or false-negatives.

8. Ways of explaining results to parents must be planned in advance, and in parallel with assessment and aid to those requiring this.

9. The costs of TAN and related diagnostic and treatment processes are justified because they are similar to or even less costly than those of other healthcare processes or neonatal screening for other conditions detectable at birth. To this purpose, training of personnel should be considered in order to bring down false-positive rates and to include "community-based health" education as advised by the WHO.

10. TAN programmes should be adjusted to suit demographic, epidemiological, and socio-medical changes.

II. JUSTIFICATION FOR TAN

11. TAN is justified by the importance of hearing in humans relating with their environments and in order to attain and serve as a base for the development of oral language, which is the distinctive characteristic of being human.

12. Deafness amongst the newborn is the most frequent of pathologies identifiable at birth, and the cost of such identification is up to five times less than that of other profiles considered as part of newborn metabolic screening.

13. Of the two telereceptor senses, hearing is more important than sight in terms of children developing reading and writing.

14. Delay in applying second-and-third-level prevention measures (TAN diagnosis and treatment) has led to the average age of diagnosis and treatment of infant deafness in Latin American countries being 40-months-old.

15. Identification of deafness at birth is perfectly feasible and is the basis for beginning diagnostic and treatment programmes to avoid disability and disadvantages due to the cognitive, educational, occupational, and social consequences which always result when diagnosis is delayed.

16. The application of TAN has a legal basis which makes it compulsory in some countries in the region, and other countries which do not include such a legal requirement in their health legislation should do so, together with the absolute requirement to continue such a basis as part of "Integrated Infant Hearing Health Plans".

17. Secondary prevention, which includes TAN, does not avoid damage or dysfunction but it does minimise or eliminate disability and disadvantage.

III. AIMS, INDICATORS, AND GOALS

18. The priority aims of TAN include the identification of all newborn babies with hearing loss equal to or greater than 50 dB in the better ear, and at a percentage of no less than 90% of all newborn babies in institutions, municipalities, or states where the programme is applied.

19. A good TAN programme will have a false-positive rate no greater than 5% of the total results.

20. Referrals for integrated diagnostic evaluations should not, in general, be greater than 5% of the total of cases studied.

21. The false-negative rate in a TAN programme should be 0%.

22. In all cases, to be considered successful processes the identification, diagnosis, and commencement of treatment should not be carried out later than six months of age.

23. Every child has a right to undergo TAN testing at birth, so the state and society have an obligation to provide these services.

IV. METHODOLOGY AND RESULTS EVALUATION

24. The use of electrophysiological means in both ears is considerably superior to any other type of assessment of the auditory canal.

25. TAN should be centred on hospital maternity departments and, in the case of children born outside hospital, through paediatric services for infants.

26. Amongst resources in Latin American hospitals, it is the Audiology specialist who should co-ordinate and manage local TAN programmes, and in close contact with newborn specialists and paediatricians.

27. Around 50% of children born with deafness do not present with risk indicators.

28. The use of automated TAN systems can diminish costs if nursing and paramedic staff are correctly trained.

29. TAN should be carried out using EOA or AABR equipment, or both if possible, and this should be done systematically before patients are discharged from hospital.

30. Infants failing TAN testing should be re-assessed as many times as possible or, minimally, in two-stage programmes before being discharged, in order to avoid high referrals to second-or-third-level prevention, and with emphasis on both the need for management of an "audiological case card" and follow-up, including the integration of diagnosis and the initiation of any treatment required.

31. The priority and specific aim of TAN fundamentally involves problems of congenital, bilateral, and profound nature. Problems of unilateral, moderate, late appearance or evolution, whether detected through TAN or not, should be referred early or become the subject of follow-up, in order to establish the diagnosis and treatment stages.

32. When problems exist for the establishment of universal TAN screening, selective TAN - which examines only those infants with risk factors - should certainly be applied universally.

33. Audiology specialists should understand that if high false-positive rates emerge, this can lead to loss of trust on the part of paediatricians.

34. The effectivenesss of TAN programmes should be periodically adjusted in line with the best international standards.

35. Audiology specialists will be in charge of co-ordinating diagnosis and treatment for infants who fail TAN tests, and this applies to the work of specialists in this field as well as co-ordinating multidisciplinary teams.

36. There is no excuse for delaying in referral of patients or for delaying evaluation of cases which have been referred for this purpose.

V. FOLLOW-UP

37. Follow-up for diagnosis and treatment of cases detected by TAN should cover at least 80% of cases detected.

38. Selective screening based on risk indicators should only replace Universal Screening if a health system is in place which provides an efficient system of paediatric follow-up.

39. Identified or suspected cases requiring paediatric follow-up after discharge from hospital must be referred to a certified specialist in the second-or-third-level centres closest to the patient's home.

40. Diagnostic programmes are a priority and complex, so they should be established in parallel with the actual TAN programme, since the latter, without diagnosis, is completely ineffective.

41. The stages of identification, diagnosis, and commencement of treatment should be fulfilled respectively, and on average, no later than at two, four, and six months of age.

42. Failures in follow-up of infant cases should be limited by the use of solid data bases, good organisation, control systems, better preparation of those involved in TAN programmes, and better communication between parents and specialists.

VI. ETHICAL, PROFESSIONAL, AND INSTITUTIONAL COMMITMENTS

43. Persons involved in this field should commit to the fulfilment of the ethical obligations which the serious implications of deafness create for treatment, teaching, and research.

44. All members of health teams are obliged to discover and disseminate true information to the public, parents, professionals, journalists, and politicians.

45. The incoroporation of teaching modules on these problems is a priority for study plans and programmes in medical schools and faculties, ideally in clinical cycles o undergraduate internships and postgraduate specialisation programmes related to this field.

46. Secretaries of state and Health Ministers should be in charge of national programmes, setting the elements which should figure in databases, and in establishing quality indicators for monitoring, feedback, evaluation, and fine-tuning of the system.

47. In each national context, there should be an efficient computer system to connect the computers of each hospital or state involved in TAN programmes through a central system.

48. The management of data in the system should always protect the privacy and confidentiality of patients or families involved.

49. A national database should serve the need to inform of the percentage of newborn children screened, the numbers of those failing TAN tests, and the percentage of diagnosis and treatment achieved in those who require it.

50. It is considered indispensable for official authorities to be urged to consider as a priority the setting up of TAN screening programme within government programmes for Health Prevention and Promotion.

Photo: © J. Ekins/Fotolia

Kimberly Armengol, Audio infos Latin America