Neonatal hearing screening in Albania: Results from an ongoing ...

Original Article International Journal of Audiology 2007; 46:176 !182

Stavros Hatzopoulos* Birkena Qirjazi§ Alessandro Martini* § ENT Department, Faculty of Medicine, University of Tirana, Albania *Audiology Department, University of Ferrara, Italy

Key Words Neonatal screening WB NICU TEOAE Risk factors Missing cases Case leakage Permanent hearing loss

Neonatal hearing screening in Albania: Results from an ongoing universal screening program Tamiz Neonatal Auditivo en Albania: Resultados de un programa en desarrollo de evaluacioń universal Abstract

Sumario

The paper describes the outcomes of an ongoing universal hearing screening program in Tirana, Albania. The main objectives of the project were the evaluation of the feasibility of a neonatal hearing screening program in Albania, and an evaluation of the prevalence of risk factors in the NICU environment. One thousand five hundred and sixty-one (1561) infants from both the WB and NICU were screened with transient evoked otoacoustic emissions (TEOAE). A detailed history of risk factors was collected in each case, thus it was possible to evaluate the main factors influencing the output of the screening program. It was concluded that the program had the capacity to identify infants with congenital hearing loss provided that an informative component is well-structured and delivered. Also, although the prevalence of risk factors appeared high, the reduction of ‘case leakage’ would allow the precise estimation of the incidence of hearing loss in the Albanian population.

Este trabajo describe los resultados de un programa continuo de tamiz auditivo universal en Tirana, Albania. Los objetivos principales del proyecto fueron la evaluacioń de la factibilidad de un programa de tamiz auditivo neonatal en ese paı´s, y una evaluacioń de la prevalencia de los factores de riesgo en el ambiente de la UCIN. Mil quinientos sesenta y un neonatos, tanto normales como de la UCIN fueron evaluados con emisiones otoacu´sticas evocadas por transitorios (TEOAE). Se colecto´ una historia detallada de factores de riesgo en cada caso, por lo que fue posible evaluar los principales factores que influyen en el resultado del programa. Se concluyo´ que e´ste tenıá la capacidad de identificar infantes con trastornos auditivos congeńitos, en la medida que exista un componente informativo bien estructurado y accesible. Tambień, aunque la prevalencia de factores de riesgo parecio´ alta, la reduccioń en la ‘‘fuga de casos’’ permitirıá la estimacioń precisa de la incidencia de hipoacusia en la poblacioń albana.

The etiology of deafness arriving during childhood is varied and often unknown. Nevertheless the prevalence of hearing impairment among children is high. Severe genetic or congenital hearing loss is represented in about 0.1 !0.2% of well babies (Parving, 1985; Parving, 1993; Fortnum et al, 2001) and in 2.5 !5% of newborns who exhibit one or more audiological risk factors (Epstein & Reilly, 1989; Jacobson & Jacobson, 2004). It has to be noted that the prevalence of hearing impairment is much higher than other congenital pathologies for which screening programs are used mainly in the neonatal intensive care unit (NICU). The registration of otoacoustic emissions (OAEs) during the first days after delivery has been proved to be the most simple, rapid, accurate, and low cost neonatal hearing screening method (White et al, 1993; Kemp, 2002). The OAEs are non-linear acoustic signals generated by the outer hair cells of the cochlea. These signals are present in 100% of normal hearing individuals (Kapadia & Lutman, 1997) and offer an expression of the anatomical and functional integrity of the cochlea. Selective screening of the high risk newborns is an alternative solution to universal neonatal hearing screening (UNHS). The infants in a neonatal intensive care unit are at least ten times more likely to have a significant hearing loss than well babies (Davis & Wood, 1992). Data in the literature (White et al, 1993; Mehl et al, 1998; Grill et al, 2005), indicate that approximately

50% of the total number of children with hearing impairment can be identified through a selective screening program. In Albania there are no collected data on the prevalence of genetic or congenital hearing impairment. Even if the incidence of hearing loss is assumed to be much or less the same as calculated in other western countries, the number of babies considered ‘at risk’ is much higher. According to our unpublished data of 2002, approximately 10 !15% of neonates were treated with antibiotics for preventive purposes, among which Gentamicin i/v was broadly used; over 12% of neonates passed an average of 3.5 !5 days at the neonatal intensive care unit; approximately 2% of neonates were born with a weight under 1.5 kg, and 7 !11% were classified with low birth weight; and approximately 10% of live births were classified as premature births under 37 weeks of gestation age. In Albania, hearing impaired children are diagnosed when the deficit has become obvious to their family and in some cases a hearing aid is advised for them. In a western preventive medicine context such a category of patients would never reach the level of the language development of their peers, due to limited stimuli during their hearing developing years (Yoshinaga-Itano 1998; 1999). The present project is the result of a joint ongoing venture between the ENT clinic of Tirana and the Audiology Depart-

ISSN 1499-2027 print/ISSN 1708-8186 online DOI: 10.1080/14992020601145310 # 2007 British Society of Audiology, International Society of Audiology, and Nordic Audiological Society

Stavros Hatzopoulos 203 Corso Giovecca, Ferrara 44100, Italy. E-mail: [email protected]

Received: April 24, 2006 Accepted:

ment of Ferrara University in Italy. The main objectives of the project in the years 2003 !2004 were: (1) the evaluation of the feasibility of a neonatal hearing screening programme in Albania, and (2) an evaluation of the prevalence of risk factors in the NICU environment. This paper reports our findings during the first two years of the project.

Materials and Methods Tested subjects The project was conducted in the main maternity hospital of Tirana for a period of one year. The reported number of the annual births of well-babies (WB) was 3783 and the postpartum mortality of 0.1% accounted mainly for the NICU population. The maternity hospital chosen (to initiate the screening project) was uniquely situated in regard to the NICU population and provided additional access to a high overall number of annual deliveries. The majority of the risk pregnancies or neonates with health problems in the country were treated in Tirana, which provided an opportunity to have a gross estimation of some figures in either a national scale, or by different regions. The experimental design of the project focused on the characterization of the NICU subjects and sampled randomly the WB population in order to generate local statistics and cost estimates for a universal screening program. One thousand five hundred and sixty-one babies were screened (of which 463 were WB, and 1098 were NICU babies) with transient otoacoustic emissions using a portable OAE screener. The WB infants were randomly selected for screening while the NICU babies were screened systematically. A standard three-phase protocol was used (TEOAEs, TEOAEs, ABR) to assess the hearing status of each neonate. The infants failing (inconclusive outcome) the first phase, were followed with another TEOAE test within four weeks from the first test. A threshold click ABR was the test of choice for evaluating the hearing threshold of the babies who failed both TEOAE tests. The ABR assessment was conducted approximately 4 !6 weeks after the second TEOAE test. In order to increase the specificity of the first stage of screening, the WB infant testing was conducted during the second, or occasionally the third day of life. According to Albanian health regulations the well-baby infants are kept in the hospital for a maximum of 24 hours after delivery. For this reason the majority of well babies screened were babies delivered through a Caesarean and therefore kept in hospital for a longer time (!/48 hrs). The screening of NICU babies was conducted whenever their health situation was considered suitable for testing by the medical staff of the NICU (and in all cases after an age of 32 weeks post conceptional age-PCA). Data on seven types of risk factors, were collected from the clinical files of the NICU babies, following the categorization proposed by McCormick (2004): ! ! ! ! !

Low birth weight (lower than 1500 g) Craniofacial abnormalities Hyperbilirubinemia Prematurity Length of stay (over three days in NICU)

Neonatal hearing screening in Albania: Results from an ongoing universal screening program

! APGAR scores (0 !3 points in the 1st minute or B/7 points in the 5th minute) ! Bacterial meningitis The parents were asked about any family history of hearing loss and this information was also filed. Additionally, the project gathered information relating to the use of Gentamicin for the treatment of neonatal infections in the NICU, and the length of use of the medication. Since the majority of NICU babies were kept in the unit for more that one week, it was feasible to re-test the same baby on consecutive days, if needed. This was done not only for issues related to the specificity of the test, but also because of the high level of background noise in the ward, which varied from day to day, depending on the number of mechanical respirators or aspirators in use. Kok et al (1994) have suggested that testing within the incubator had the potential to reduce any background noise, therefore this was the preferred testing method applied whenever possible. The parents of the babies with health problems stayed in a separate part of the building and the mothers of the tested infants were not present during testing. Sometimes, the test was performed after the babies were fed because the babies were sleepier after feeding. Bedside testing was applied whenever possible, being considered as a potential factor for reduction of maternal anxiety (Watkin, 1998) related to the screening test. This offered a better testing environment because within the NICU the level of noise sometimes made the first TEOAE test impossible to complete, and data were collected in subsequent sessions.

Electrophysiological recordings The TEOAE tests were carried out with the EchoLab-Plus, a portable fourth-generation screening device (LABAT, Italy). The screening protocol consisted of a linear technique using an acoustic click stimulus of 70 dB SPL. The ‘pass’ criteria were set at ]/70% reproducibility, and a ]/6 dB SNR (signal to noise ratio) for at least 2 out of 5 frequency bands (1000, 2000, 3000, 4000, and 6000 Hz). Additional details and the motives for using Linear TEOAE protocols in screening can be found in previous publications (Hatzopoulos et al, 1998; 2000; 2002). When necessary, auditory brainstem responses (ABR) were obtained with a clinical device (Epic, LABAT) using click stimuli equal to 55 dB SPL (equivalent to approximately 45 dB nHL, at the insert tip). The responses were the results of 1500 averages with the standard ABR filter settings (Hatzopoulos et al, 2002).

Questionnaires from mothers of the infants In order to investigate the general attitudes and knowledge in the community regarding the programs of early intervention and rehabilitation, to identify the possible factors influencing the considerable percentage of ‘case leakage’, a questionnairebased survey was conducted with the mothers of the babies. Overall, 200 questionnaires were completed by the mothers of babies admitted both to WB and NICU. The information was gathered in two large maternity hospitals, the main maternity hospital in Tirana, where a screening program was already established, and the maternity hospital in Fier, a city in the south of Albania. The latter also had a high number

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of annual deliveries. No screening program had ever taken place at the maternity hospital in Fier, but there was potential for an extension of the actual one in Tirana. The details and the results of the survey are presented in the Appendix.

Results Program outcome and estimation of hearing loss incidence During the project a total of 463 WB and 1098 NICU infants were screened. This figure constitutes 23% of the total number of deliveries in Tirana, and approximately 3% of births nationally (the precise figure is not available yet). Since the WB ward of the hospital covers mainly the area of the Albanian capital, 87.4% of the screened WB infants originate from Tirana. The WB group presented better tracking opportunities and simplified the arrangements with parents for eventual follow-ups and retesting. The screening outcomes per stage are presented analytically in Table 1. The data are presented separately for the WB and the NICU populations since these infant categories have very different characteristics.

First phase OAE testing The pass estimates for this phase were higher in the WB than in the NICU dataset (87.5% vs. 83.8%). For the WB population, 9.7% of the screened infants resulted as refers, from whom 9% failed bilaterally. In the NICU 14.8% of screened infants resulted as refers, from whom 9% also failed bilaterally. A total of 3% of the NICU infants were assessed in one ear only due to difficulties related to their state of arousal in combination with background noise in the NICU. A small percentage of infants from the WB and the NICU populations (2.8 and 1.4%) were not admitted to the second phase due to an early discharge or exitus.

Second phase OAE testing Forty-five WB and 163 NICU infants were admitted to the second OAE testing phase. In Table 1 (second phase panel) it is shown that only 50% of the NICU subjects who failed the first phase returned for retesting. In contrast, 60% of WB infants

returned for retesting from which 92.5% (25 cases) came from the Tirana area. These numbers indicate how a wide geographic distribution of subjects can cause complications to a screening program. The number of ‘case leakage’ subjects (i.e. infants who did not show up for the second or third test) was estimated at 6.7% of the WB and 9.4% of the NICU populations. These global estimates include the missed cases from phase one, and the leakage cases from phases two and three. At the end of the second phase 92.4% of the WB infants and 89.7 of the NICU infants were properly assessed as pass cases.

Third phase ABR testing Four WB and 12 NICU cases were admitted to the third phase of the program. This phase of the project presented the lowest number of leakage cases (two for the NICU category). All four WB infants were found with a normal ABR hearing threshold. From the twelve NICU cases eight were found with a normal ABR hearing threshold, two cases did not return for the ABR evaluation and two cases presented thresholds higher than 60 dB HL. These two cases were recommended for fitting with hearing aids (HAs), and follow up in the appropriate fitting facilities. The incidence of hearing loss in the NICU category was estimated as 1.8 per thousand. No infants from the WB category were identified with a hearing loss, therefore no incidence estimates were available for the WB population.

Estimation of the risk factors The estimation of risk factors from the available data was only a preliminary one. To achieve more accurate figures, a larger number of NICU babies is required. Also the clinical files of the NICU infants were not always updated with sufficient details (i.e. standardized descriptors). For example, hypoxia, respiratory distress, asphyxia etc, all referred to similar conditions but sometimes the APGAR scores or blood-gas values were lacking. This introduced a bias in information when trying to categorize babies with similar conditions. Table 2 summarizes the risk factors in the NICU population, as a percentage of babies with one, two, three or more risk factors. The collected data suggest that 77.3% of the NICU

Table 1. Screening efficiency per population and per screening stage. The figures represent the number of subjects, the respective percentages are included in brackets. The last panel summarizes the findings from the previous three stages. The first-stage panels under the heading ‘Missed’ give the infants who were not referred for a second test because of early discharge or exitus First stage

Total screened

Well babies NICU

463 1098

Total pass

Refer

Missed

405 (87.47%) 920 (83.78%)

45 (9.71%) 163 (14.84%)

13 (2.80%) 15 (1.37%)

Second stage Well babies NICU

Tested 27 (5.83%) 77 (7.01%)

Pass 23 (4.96%) 65 (5.91%)

Refer 4 (0.86%) 12 (1.09%)

Leakage 18 (3.88%) 86 (7.83%)

Third stage Well babies NICU

Tested 4 (0.86%) 10 (0.91%)

Pass 4 (0.86%) 8 (0.72%)

Refer 0 2 (0.18%)

Leakage 0 (0%) 2 (0.18%)

ALL stages Well babies NICU

Total screened 463 1098

Total pass 432 (93.30%) 993 (90.43%)

Refer 0 (0%) 2 (0.18%)

178

Missed"/Leakage 31 (6.7%) 103 (9.38%)

International Journal of Audiology, Volume 46 Number 4

Table 2. The percentage of risk factors in the NICU population. Note: in the first column (No info) there was either no risk factor or nothing documented in the file on the date of testing; and in the third column the babies who had either one, or three, or more risk factors were not included in this group Number of risk factors present

No info

One

Two

Three

More

Percentage NICU population

22.7

44.3

22.2

7.5

3.3

population presented one or more risk factors. 25.4% of all babies in NICU were treated with Gentamicin and/or Amikacin (the latter in a few cases). This figure was higher than the one expected or reported previously. The most prevalent risk factor among the NICU population was prematurity, followed by respiratory distress (including asphyxia and hypoxia). Twenty five percent of ‘fails’ in NICU presented none of the risk factors. This figure probably included also some cases with a family history of hearing loss or other risk conditions. However no such information was provided by the parents. Cases of meningitis accounted for 1% of the NICU population, whereas 1.7% of the babies presented a Cranio-facial abnormality. The distribution of different risk factors, in percentage NICU, is presented in Figure 1. The above pattern brought to attention the need for a short form/questionnaire, designed to collect information regarding risk factors (maternal infections, relevant family history, etc) that would ideally be completed before the babies were discharged from hospital.

Discussion In infants, the acoustic input from the peripheral auditory system is critical for the maturation of the central auditory pathways, hence auditory deprivation can cause serious impairment in the normal development of the learning process. A child with a hearing deficiency does not have the opportunity to develop adequate or normal attention and listening skills. All these restricted communication capabilities are frequently associated with poor academic performance and might lead to social isolation. Advocates of universal newborn hearing screening believe that earlier application of any available intervention strategies, such as speech and language therapy, amplification, and family support, could reduce or eliminate the gap in language skills between deaf and hearing children (Vohr et al, 1998; Yoshinaga-Itano, 2003). In clinical contexts outside the US and mainland Europe the early identification of deafness in children often takes place between an average age of 24 and 30 months. Neonatal hearing screening has the potential to reduce the age of conformation of congenital impairments (Yoshinaga-Itano, 2003; Prieve et al,

2000; Dalzell et al, 2000). Based on the premises offered in the literature our study proposed to analyse the feasibility of a similar program in Albania. It targeted mainly the NICU population and covered around 85% of the babies therein admitted. Despite the extensive testing in the NICU the experimental design dedicated some resources to the WB testing as a means to evaluate a model of universal hearing screening program. Our results indicate that a three-phase program can identify infants with hearing deficits within acceptable levels in the context of public health in Tirana. The data do not show whether it is possible to export this know-how to other Albanian regions where difficulties might arise in the third screening phase (ABR testing) and intervention strategies (i.e. hearing aid fitting and cochlear implantation). The incidence of hearing loss (HL) in the WB category was not estimated since no infants were identified as refers in the third phase. The incidence of hearing loss (HL) in the NICU population was estimated as 1.8 per thousand, a value which is relatively low in comparison to the data reported in the literature (Prieve & Stevens, 2000; Spivak et al, 2000). It is assumed that the total number of leakage NICU cases (9.38%) might have contributed to a higher incidence of hearing loss. It should be noted however, that the estimates of HL incidence oscillate frequently, especially when the studied population samples are small. It only takes few cases per hundred to completely shift the yearly numerical values of HL incidence in any small scale program. A factor that has positively influenced the low HL incidence in the NICU was the choice of a fourth generation screening device. Using such devices, it is possible to conduct multiple hearing assessment sessions in short time-windows for infants who initially cannot be evaluated, due to high ambient noise, infant agitation etc. In this context, the possibility of frequent assessment of infants improves the overall screening performance. The presence of ambient noise combined with the electromagnetic interference of the NICU devices has a negative affect on the outcome of an OAE or automated ABR test. Since the ambient noise varies according to the time of day Distribution of risk factors in NICU population aminoglyc.therapy.

WB

NICU

25.4

CF abnorm.

1.7

meningitis risk factor

Table 3. The opinion of mothers regarding the most appropriate time for the disclosure of deafness. The numbers present (as a percentage from the total number from each site), the mothers who prefer to know at birth (first and third columns), or later on (second and fourth columns)

1

low APGAR

7.6

length NICU

13

prematurity

47

respiratory morbidit.

32

hyperbilirubinemia

8

low weight

Category Tirana Fier

At birth (%)

Later (%)

At birth (%)

Later (%)

94.6 96

5.4 4

97 90.9

3 8.1


3

0

10

20

30

40

50

percentage NICU

Figure 1. The distribution of different risk factors in the NICU. The values are depicted as percentages. Hatzopoulos/Qirjazi/Martini

179

Figure 3. The level of information on the impact of hearing loss on child development.The figures are presented as percentages based on the total number of subjects for each city.

learning curve and the inexperience of the screening personnel (Maxon et al, 1997) during the first 12 months of the project, in combination with the high level of external noise in the NICU. The tests were carried out by three different professionals and each of those needed a certain amount of time to gain sufficient experience with the screener and OAE testing. It is quite probable that some minimal differences could also be expected in our data compared with the data from other programs caused the use of different TEOAE protocols which provide different outcomes for borderline cases (Hatzopoulos et al, 1999). The majority of cases were assessed during the first phase, and only 208 cases were evaluated with a second and a third phase. The performance of the program in these two phases was better for both populations, mainly due to the fact that it was easier to follow-up the WB infants (better ambient conditions) and the NICU cases( fewer infants and more available test trials). Despite the problematic presence of ambient noise in the NICU, after the second phase 89.7% of the infants were properly assessed. The estimates for the WB population at the end of the second phase refer to a 92.4% pass rate. The latter was mainly attained by changing the ambient conditions of the test from the noisy neonatology ward (first phase) to a quieter room (second phase), and with the presence of the infant’s mother. Arousal issues (i.e. high mobility and presence of muscular artefacts) were more critical in the WB population due to the chain reaction effects (once one infant became stressed the others followed as well) easily initiated in the neonatology ward. Regarding the presence of the risk factors in the NICU infants, the five most common risk factors were: the length of stay in the NICU, prematurity, respiratory morbidities, the use of aminoglycosides, and hyperbilirubinemia. While the prevalence of the majority of risk factors appeared lower than the rates given in the study by Vohr et al (2000), the overall percentage of NICU infants with one or more risk factors was much higher (85% vs. 41.9% in the Vohr study). Taking into consideration speculation whether the presence of more than one risk factor for hearing impairment imparts greater risk, the figure of 85% was somehow challenging. The data suggest that a larger number of infants should be screened and a better followup of the subjects who fail the in-patient tests should be established, in order to elucidate this issue. The survey of mothers (see Appendix) suggested that the sampled population lacked the necessary information about the methodologies of hearing loss identification, its impact on the future development of the child, and the strategies for reducing these effects (early intervention). The data from the survey suggest that the percentage of ‘case leakage’ (6.7% for the WBs and 9.38% in the NICU) was related to lack of awareness in the community. Taking into consideration the fact that in these early months it is difficult for the parents to notice any sign of a probable hearing loss, the level of community information seemed crucial. The preparation of informative leaflets, posters, videos, and TV programs that cover all these issues appeared to be the best strategy for the reduction of the percentage of ‘case leakage’ and better cooperation with the parents. The results presented in this report were mainly based on the data from the in-patient screening, therefore a more precise estimation of the incidence of congenital hearing loss for the

180


91%

100

precentage

80

80.5%

64%

60 36% 40

19.5% 9%

20 0 Tirana

Fier some info

total no info

Figure 2. The level of information regarding the identification strategies. The figures are presented as percentages based on the total number of the subjects for each city. (see appendix) (depending on the clinical activities scheduled in the NICU) it is possible to obtain good responses not after a single trial but after four or five trials over a period of two to three days. This model has been applied successfully to the NICU infants but it was not applicable to the WB population due to the time constrictions (infant discharge) imposed by the hospital administration. The pass refer rates of the first phase, in the WB and NICU populations were 87.5% and 83.78%, estimates which suggest that the first screening phase has been implemented successfully, but there is room for further procedural optimizations according to the data presented in the literature from more experienced programs (Prieve et al, 2000). In the first phase of the project, 1.4% of ‘missed’ cases in the NICU included the infants who were not referred for the second phase of OAE testing. These were: (1) infants who were discharged before the date on which the second test was given; (2) infants who were deceased during their stay in the NICU; and (3) infants whose parents refused the second screening test. In terms of screening efficiency 50% of the NICU referrals from the phase returned for a second OAE test, while only 1.09% of the total NICU infants screened required a threshold ABR. Similar figures were reported by the New York State universal hearing screening demonstration project (Spivak et al, 2000). In the first phase the in-patient refer rate of the NICU (14.8%) was higher than the rate reported in other studies (Vohr et al, 1998). We postulate that this estimate was influenced by the 72%

Total

28% 91.5%

Fier

8.5% 53% 47%

Tirana 0

20

40 60 percentage some info

80

100

no info

populations in study at this stage was not feasible. Independently, the project has shown that a screening and early intervention program is feasible in the Tirana area. Pilot data from the distributed questionnaires have indicated that the hearing screening experience in Albania can benefit significantly from a well structured information campaign.

Acknowledgements This project was supported by Oticon Foundation, Denmark, and GlaxoSmithKline, Albania.

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Appendix Survey based on the questionnaire for mothers The questionnaire consisted of eight different sections, aiming to gather information about different topics, mainly the level of the parental anxiety (questions 4 and 5), awareness in the community of the consequences of permanent childhood hearing loss (PCHL), the available diagnostic and rehabilitation services (question 6 and 8), and the general attitudes and mentality of the community towards hard of hearing individuals and children (question 7). The questionnaires were completed anonymously and the mothers were randomly selected. Almost all mothers at both sites were in favour of an early disclosure of deafness, wanting to know at birth if there was a hearing problem. Only a few chose ‘six months to one year after delivery’ as the most appropriate time for the disclosure of deafness. These results are tabulated in Table 3. Section 6 was used to collect information about the parents’ beliefs on the usefulness of the hearing aids and has no relation to any possible family experience with a screening program. Interestingly, 52% of the mothers have selected ‘great benefit’ as the answer to the question of ‘how useful was a hearing aid for a hard of hearing baby to your opinion’. Only 1.5% believed that hearing aids have no benefits at all. Section 7 covered three main topics in the field of hearing aids (HAs) in Albania: the general attitudes of people regarding the hard of hearing, the problems related to the prices of the HAs, and the issue of the proper selection/fitting of HAs. Only 1.5% of mothers were concerned about the price of the HAs; 2% were mainly concerned about the fact that an HA would identify a child as having a disability. The rest of the mothers were most concerned about the selection/fitting of the HAs. Finally, the objective of section 8 was to investigate the level of community awareness on the methods of identification and intervention on the PCHL, and also background information about the specialized centres which offer diagnosis & rehabilitation. The results of the survey are presented graphically in Figure 2. It is obvious from the graph that the majority of parents had no information about the methods of early identification of hearing loss, although in Tirana there appeared to be a higher level of information among the parents regarding this topic. A difference between the two cities was also observed in the level of general awareness about the consequences of hearing loss on the future development of the child. Independently from this inter-city difference, the general trend showed a lack of knowledge within the population. The information gathered through the question 8 b is presented graphically in Figure 3. The situation appeared different on the last questions, where 70% of the overall subjects had some idea about the available services for advice and expertise, though 61% of the mothers admitted in NICU/Tirana did not. The results of this survey showed that the large majority of parents would appreciate a hearing test at birth, allowing an early confirmation of deafness. Watkin et al (1995) reported that around 92% of parents who had taken part in his study were in favour of a neonatal hearing test. The figure in our study is higher, but Watkin included in his study only the parents of children with a confirmed hearing loss, which may have influenced their attitudes toward a neonatal screening test. The survey pointed out that the screening program was accompanied by a certain level of parental anxiety, which could be related to several factors. The questionnaire was completed either the first or second day after delivery and for the majority of mothers this was the first delivery. Therefore, we could speculate that both the scale used and the emotional post-partum status, have influenced the level of anxiety to some degree. However, in our opinion the main contributing factor was the lack of information about the screening test. This was supported by the findings of the last section, where 80.5% of the mothers admitted to have no information about the methods of early identification of hearing loss. The most unexpected finding of the survey was the considerable number of mothers who have reported the proper fitting of HAs to be the main concern if their child had a hearing loss. Based on our professional contacts with patients, we believe that in Albania, the stigma accompanying a hearing loss is the major factor affecting the rehabilitation process in both children and adults. Therefore, if the responses had been sub-grouped according to the ‘pass’/‘fail’ results of the test on the babies of the subjects, a better conclusion may have been drawn. It was reasonable to think that, as the majority of babies have passed the test, the mothers had no need to face the consequences of this stigma and therefore the question probably was not considered properly by them. This issue can be better investigated in the future, by a more detailed questionnaire delivered to the parents of the children/babies already identified with a hearing loss. It was encouraging to find out that, in general, parents at least knew where to find the diagnostic and rehabilitation services, if needed. In NICU/Tirana the situation was different, with 61% of mothers having no information about these services (compared with 23% in the other locations). This fact could be related to the wide spread of areas from which these subjects arrived. The majority of the specialized centres are localized in Tirana or other major cities, while in some smaller areas there are no such specialized centres. As a result, not all the subjects were informed equally about the locality of these centres.

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