A: In- county information

 

 

Albania is a country with a young population and the latest data count approximately 60,000 live births annually. Unfortunately, this is also accompanied by a high incidence of perinatal problems, some of which are related to Childhood Permanent Hearing Loss.

The break down of the previous health policies and the extremely slow process of the establishment of the new ones and of the respective legislation has created big gaps in what should otherwise function as a chain of services.  This applies also to the issues of identification and rehabilitation of hearing problems in children.   

Consequently the children are treated at a later stage when the hearing deficit is quite evident and is aggravated by the lack of speech and language development. In this stage, it is difficult not only to assess the residual hearing level, but also to prescribe and adjust a hearing aid.  The audiologist has a major role in the medical team involved in the last two processes mentioned above.  Therefore the lack of the qualified personnel, the proper equipments or improper usage of the existing ones together with the limited availability of adequate hearing aids in the market, increase the number of children with a moderate to severe degree of hearing handicap.

In Albania there is still operating a special school for blind and deaf children, where the only option given to children with severe to profound hearing loss is the sign language; often they are isolated from their peers and sometimes even from their families.

 

The services available for children with hearing loss in Albania are scarce and fragmentised.  Different small scale projects have targeted isolated issues, group-ages or geographic areas but with little impact and no sustainability. 

  In Albania also there are no previous data on the incidence and prevalence of genetic or congenital hearing impairment.  Even if the incidence is assumed to be much or less the same as calculated in other western countries, the number of babies considered 'on risk' is much more higher.

Some unpublished data of 2003 –2004, can easily illustrate the above statement: over 12% of neonates pass an average of 3.5-5 days at the Intensive Care Unit; approximately 2% of neonates are born with a weight under 1,5 kg, 7-11% are classified with low birth weight, and approximately  10% of live births are classified as premature births (under 37 weeks of gestation age).

 

 

 

 

B1: Organization

 

With the initiative of the Tirana University ENT clinic / National ENT Society and with the ‘hearing screening know how’ of the Ferrara University, Department of Audiology we have designed a small scale pilot project. 

The start up phase of the project was funded by OTICON Foundation (Denmark), the SOROS Foundation (Albania), Medel (Austria) and LABAT (Italy). The latter has generously provided an automated screener (Eclipse II) for a period of 14 months.

The project was initiated in the main maternity hospital of Tirana which covers already 10% of the overall national deliveries.   In regard to NICU population this maternity is even better situated.  The majority of risk pregnancies or neonates with health problems are treated in Tirana, which provides an opportunity to have a gross estimation of some figures in national scale or by different regions.

During the preparatory stage (early 2004) the initial training delivered on the issues of screening techniques and their pitfalls was further extended by ‘on job training’.  A workshop with the participation of ENTs, Neonatologists, health authorities and child development agencies lunched the screening project on the professional community (June 2004).

Due to the lack of the qualified personnel and limited number of devices, the project has mainly targeted ‘the risk’ babies, screening with TEOAEs / DPOAEs over 90 % of the total number of neonates  babies treated in the NICU, and some randomly chosen well babies (50-60 babies per month).  The second stage is carried in the ENT department and consists on another TEOAE test.  The babies that fail the second test are sent for a diagnostic ABR in the paediatric department.

 

 

B2 : Structure of the program and people involved

 

 

 

 

 

 

 

 

 

C: Results

 

The Data collected up to 01 March 2005 (from July 2004) can be summarized in the following Table in terms of Pass, REFER and leakage cases.

 

 

 

 

 

D: Encountered Problems and proposed solutions . 

 

The encountered problems vary, from those generally faced in the presentation of a new program to those related to the specific conditions of the country.  A new service is always accepted with some reserve, so we have to fight some negative attitudes of medical personnel and/or other personnel involved, but the very good cooperation and exchange of information between neonatologists and screening team enabled the acceptance of screening as a routine procedure.

 

 

On this particular moment ‘case leakage’ appears to be a problem that needs to be addressed somehow. In the second stage retests, only roughly 30% of babies were presented.  The attendance varies from one day to the other and issues related to the geographical coverage have to be taken also into consideration.  The majority of ‘REFERs’ comes from NICU population and some of these families live far away from the capital and in the remote areas of the country.  Therefore they might find difficult to attend the given appointment.  Though this might be a relevant explanation we think that there are other underlined factors connected both with the lack of information and the stigma that accompanies the hearing handicap, which account for the low number of second test.

The latter and some other issues related to parenteral anxiety and screening are the target of a small scale study started on the early 2005.  In the following months we expect to have some figures that will identify some of the needs and will help us to design a project component for rising the awareness of the community.

 

The lack of sufficient qualified personnel, devices and relevant policies has been and is still a problem when considering a smooth running of services. Some of the calibration /maintenance routines are broken down and it is difficult to ensure standardised data.   

 

Regarding Hearing Aids (HAs) and hearing handicap there are still no systems to regulate the market or to reflect the government responsibilities. Fitting is done privately, with high prices and sometimes by not qualified individuals with absolutely no benefits for the people who seek these services.  There is no presentation of dispensers in the country, sometime HAs service is unavailable making the whole process very difficult and time consuming.

 

And finally as usually, there are some financial issues, because obviously more the project develops more problems are to be addressed.  Probably in a later stage, governmental structures have to be involved somehow but we are still far from that point.  We do not have yet sufficient data and a perfect running chain of services, is still far away in the future .