Data recollection at PPHI From Smith Andrew W congenital

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					    Data recollection at Programme for Prevention of Hearing Impairment in Bolivia
            - Assessing the population needs and prioritizing interventions -

                                  Dr. Diego J. Santana-Hernández
                         Fundación Totaí, Trinidad-Beni, Bolivia, Casilla 158
                                    santanadjeh@hotmail.com

Abstract:

Bolivia is the poorest country in South America and has no universal Health Care available. There are
no published population based studies to determine either incidence or prevalence of Hearing
Impairment, nor is there a register of people with Hearing Disability.

We acknowledge the importance to evaluate the population’s ear and hearing health reality. Lacking
resources to carry out a comprehensive population based study, alternative methods to gather and
evaluate data were chosen. The findings have helped to assess the service provision needs and prioritize
the possible interventions in a limited setting. Furthermore, those strategies and activities have
developed into the present Programme for Prevention of Hearing Impairment in Beni State, Bolivia.

The purpose of this paper is to encourage health workers in developing countries, who may be in similar
or worse circumstances, by describing six methods used for data recollection. The results found and
their interpretation are detailed.

1. Literature revision of limited published data for Bolivia. Estimated prevalence of Disabling Hearing
Impairment for Beni State is 0.913% population, a low figure compared to similar countries where
population based studies have been performed.

2. Retrospective study on 64 children attending Trinidad-Beni’s School for the Deaf. Results: only
7.81% were diagnosed before 2 years of age. Average age at definitive diagnosis: 9 years 1 month
(females: 8 years; males: 10 years 4 months; p<0,001). Profound cases were diagnosed earlier than
severe ones (p<0,01). Time elapsed between family suspecting deafness and educational “integration”
averaged 9 years 2 months, with significant difference (p<0,01) between males (11 years) and females
(7 years 1 month). Time elapsed until family suspicion of Congenital Hearing Loss was 2 years 4
months. The most alarming factor in late diagnosis of congenital hearing loss was the delay between
relatives suspecting deafness and specialist consultation (5 years 3 months).

3. Service provision records from 2006 of 2,936 ear related consultations show: 27.1% Normal ears &
hearing, 22.8% Otitis Media, 4.7% Congenital Deafness, 2.6% Presbyacusis, 42.8% Other pathology.

4. Otoscopy and hearing screening of 858 mainstream primary school children found: 49.5% Normal,
25.6% Ear wax, 11.2% OME, 7.8% Tubaric Disfunction, 1.2% Acute Otitis Media, 0.8% Chronic Otitis
Media, 0.7% Foreign Bodies, 0.6% Congenital Deafness, 0.5% Otitis Externa, 2.1% Others.

5. Family & medical questionnaire, otoscopy and Oto-Acoustic Emissions for a population of 593 under
5 years of age. Results: 45.4% Normal ears and hearing, 13.5% Otitis Media / OME, 0.7% Congenital
Deafness, 20.7% Other ear pathology and 19.7% require further investigation.

6. Questionnaire, otoscopic and audiometric screenings of 210 factory workers exposed to loud noise.
Results: Only 12.4% had normal ears and hearing, 46.2% Acoustic Trauma, 17.1% Mild Hearing
Impairment, 1.4% Moderate Hearing Impairment and 22.9% Other ear pathology.

It is our conclusion, that recording relevant data during busy daily service provision and community
activities, is very desirable, as it helps to identify the real needs and allows improvement on time and
resources management, by establishing the adequate priorities for the programme.

Keywords: Hearing Impairment, Data recollection, Bolivia
Introduction:

         Bolivia is a multicultural landlocked country, situated in the heart of South America. It has an
extension of 1,098,581 Km2 and a population of 9,427,219 (Growth rate: 1.5% and Density: 8.6 Hab./
Km2). Its geography varies from the arid highlands of the West, with cities located higher than 4,000m.
asl. in the midst of the Andes mountain range; to the fertile lowlands in the East, where Beni State is
situated at 155m. asl. Beni occupies 19% of the country, it extends over 213,546 Km2 of Amazon
prairies, with a disperse population of 406,982 (Density: 1,9 habitant per km2; Growth rate: 3.35%).
Literacy rate in 2003 was 86.7% (93.1% for males and 80.6% for females). Bolivia is the poorest
country in South America and it is included in the United Nations Initiative for Heavily Indebted Poor
Countries (GDP: 25.95 Billion $US, GDP per capita: 2,900 $US and 4.9% Inflation Rate). Birth rate
23.3/1000 habitants, Infant Mortality 51.8/1000 live Births. Life Expectancy 65.8 years. Bolivia has the
lowest number of deliveries attended by health professionals and the highest maternal mortality in
South America: 229 for every 100,000 live births. Neonatal and infant mortality (under 1 year) are 27
and 54 per 1000 live births, respectively1.

       Bolivia has no universal Health Care available due to lack of human, financial and logistical
resources. There are no published population based studies to determine either incidence or prevalence
of Hearing Impairment in Bolivia. There is no register of people with hearing disability or a National
Health Service Technical Committee. There is no national project for the prevention, early detection
and rehabilitation of deafness, or for the promotion of ear and hearing health in the general community.

Background:

        We acknowledge the importance of evaluating the population’s ear and hearing health reality.
Lacking resources to carry out a comprehensive population based study, alternative methods to gather
and evaluate data were chosen. The findings have helped to assess the service provision needs and
prioritize the possible interventions in a limited setting. Furthermore, those strategies and activities have
developed into the present Programme for Prevention of Hearing Impairment in Beni State, Bolivia.

        The purpose of this paper is to encourage health workers in developing countries, who may be in
similar or worse circumstances, by describing six methods our Programme has used for data
recollection. The results found and their interpretation are detailed.

Methods:

        Several methods described in this article are the product of our response to the population’s
immediate service necessities. Others resulted from our guided interest to estimate the magnitude of the
health burden we were facing, in order to better assign Public Health activities within our key strategies
in the process of setting up a Programme for the Prevention of Hearing Impairment (PPHI) in the Beni
State: raising public awareness on ear and hearing health and Hearing Impairment prevention at all
levels. We detail unpublished data related to the PPHI and quote other studies performed at our base
centre in Trinidad-Beni or elsewhere. The six methods used are as follows.

    1. Literature revision
    Literature revision of limited published data for Bolivia, only revealed the estimation of the World
Health Organisation, based upon investigations carried out in countries with similar characteristics 2, and
a study by the Japanese International Cooperation Agency (JICA), carried out in Bolivia in 1998 on
16,888 people with some form of disability.3

    2. Retrospective study on Deaf students 4
    A retrospective closed analytical study of 64 students attending the only School for the Deaf in
Trinidad was performed, aiming to study the aetiology of hearing impairment and reasons for the
delayed diagnosis of deafness. All the students had a chronic hearing impairment greater than 60 dB HL
average for the better ear. Both aetiology and the diagnostic process (timing and investigations) were
examined. In order to better evaluate such delay in reaching a diagnosis, the period from the moment
when hearing Impairment occurred until final integration into society took place, was divided into 5
stages:

   1. Hearing Impairment Occurred to moment when family suspected hearing impairment
   2. Family suspicion of hearing impairment until medical consultation was requested
   3. Medical consultation to definitive diagnosis of hearing impairment
   4. Definitive diagnosis to enrolment in special school (or special support group)
   5. Enrolment in special school to “integration” into society

   3. Internal service provision records
   Service provision medical records of 2,936 ear related consultations attending the ENT and/or
Audiology Outpatients Department at Fundación Totaí Clinic5 in Trinidad-Beni, Bolivia from 1st
January to 31st December 2006.

    4. Screening of primary school children
Otoscopy and hearing screening of 858 mainstream primary school children. Performed as part of the
Community Programme of School multidisciplinary health check-ups. Otoscopy performed by an ENT
surgeon and hearing screening by a qualified audiologist, using a combination of Oto-Acoustic
Emissions (Oto-Read® OAE tester; Mode TE Custom: Primary Tones 40dB SPL, 6 Frequencies: 0.7,
1.0, 1.4, 2.0, 2.8 & 4.0 KHz, Average Time: 32 sec. Positive answer for 3 different Frequencies was
considered a PASS TEST) and subjective methods (distraction tests and tuning forks). All findings were
recorded by each examiner on a personal Kardex designed for this specific purpose.

    5. Questionnaire and screening of population under 5 years of age
    Family & medical questionnaire, otoscopy and Oto-Acoustic Emissions for a population of 593
from 7 days to 5 years of age, attending the Paediatric Regional reference Hospital as a patient or as an
accompanying child, infant or newborn. Family and personal questionnaire included family history of
Hearing Impairment, Ante-natal, birth, peri and post-natal history, known ototoxic treatment and other
pathologies responsible for acquired hearing loss or speech delay. Otoscopy was performed by an ENT
surgeon and hearing screening by a qualified audiologist, using Oto-Acoustic Emissions (same
equipment and settings as described in paragraph 4 above).

    6. Questionnaire and screening of workers exposed to loud noise
    Questionnaire, otoscopic and audiometric screenings of 210 factory workers exposed to loud noise,
provided by the PPHI-Beni to help employers comply with work regulations. Four different workplaces
were chosen for their level of noise. One producing and bottling soft drinks, one electric power plant,
the local airport and one milk processing and packaging factory. The questionnaire included family
history of Hearing Impairment, personal Medical, Drug, Social and Work history, accumulated time of
noise exposure, present occupation, timetable and hearing protection used. Otoscopy was performed by
an ENT surgeon and hearing screening by a qualified audiologist, using either a Kamplex AD17® or
Godisa Solaraid H-425® Audiometer, with a background noise of less than 25dB SP. Hearing in both
ears was tested at 0.5, 1, 2 and 4 KHz, and arithmetical average was recorded. Continuous background
noise level and impact noise peaks were measured with 2 sound level meters simultaneously (Kamplex I
EC651® and AZ 8928®) in all working areas where personnel had access to. When different readings
were obtained, two measurements were taken and an average was obtained. Personnel hearing
protection devices available (insertion foam tips and cup headsets) were tested.


Results:

    1. Literature revision
    The World Health Organisation, based upon investigations carried out in countries with similar
characteristics, estimate that 10% of the population suffer some type of disability.2 The Japanese
International Cooperation Agency (JICA), according to investigations carried out in Bolivia in 1998,
established that 9.13% of the people with disability studied suffer a disabling hearing loss according to
the WHO definition.6 Correlating those figures, the estimated prevalence of Disabling Hearing
Impairment for Bolivia should be 0.913% population, a low figure compared to similar countries where
population based studies have been performed. In any case, 0.913% of Beni State’s population
(406,982) translate into an estimated prevalence of 3,716 persons with hearing disability.

    2. Retrospective study on Deaf students4
In this retrospective study, out of 64 children attending Trinidad-Beni’s School for the Deaf, only
7.81% of cases with congenital Disabling Hearing Impairment were diagnosed before 2 years of age.
Average age at definitive diagnosis: 9 years 1 month (females: 8 years; males: 10 years 4 months;
p<0,001). Profound cases were diagnosed earlier than severe ones (p<0,01). Time elapsed between
family suspecting deafness and educational “integration” averaged 9 years 2 months, with significant
difference (p<0,01) between males (11 years) and females (7 years 1 month). Average TOTAL TIME
ELAPSED from the moment when hearing damage occurred until “integration into society” (school or
work) of the hearing impaired person took place is: 9 years and 9 months. Significant difference exists
between genders: males: 11 years 6 months, females: 7 years, 7 months.

   Average time elapsed, by stage (includes both congenital and acquired Hearing Loss):
   1. Impairment to suspicion:              1 year 7 months
   2. Suspicion to medical consultation:    5 years 2 months
   3. Consultation to diagnosis:            -1 year 10 months
   4. Diagnosis to school entry:            1 year 5 months
   5. School to integration:                2 years 7 months

There is a significant and important delay for congenital hearing impairment in stage 1: an average 2
years 4 months passed before relatives suspect it (compared to 2 months, 2 weeks in acquired cases).
However, the most significant delay in diagnosis happens in stage 2, from family suspicion to
requesting specialist consultation: average 5 years, 2 months, with a significant difference between
genders: males: 6 years 3 months; females: 4 years 1 month. The negative symbol of stage 3 indicates
that the norm is to enter special schooling BEFORE medical or audiological evaluation takes place. The
period for “social integration” seems adequate at a glance, but according to M. Guevara,7 in Bolivia,
only 1.6% of those with Hearing Disability are integrated into education and the labour market,
which represents 6% of the total of disabled population (or with learning difficulties) successfully
integrated in the country (For a clearer interpretation of the sequence see Figure 1). 8


    3. Internal service provision records
    Service provision records from 2006 of 2,936 self-reported consultations showed: 27.1% Normal
ears & hearing, 22.8% Otitis Media, 4.7% Congenital Deafness, 2.6% Presbyacusis, 42.8% Other
pathology.

    The most frequent pathologies found in 828 patients with ear symptoms as presenting complain
were as follows: Wax/Debri in EAM (13.65%), Sensori-Neural Hearing Impairment not age related
(11.59%), Acute Otitis Media (7.61%), Eustachian Tube Dysfunction (7.61%), Diffuse Otitis Externa
(7.00%), Chronic Otitis Media - Mucosal Active (Supurative) (6.64%), Age related SNHI
(Presbyacusis) (6.52%), Otitis Media with Effusion (5.43%), Fungal Otitis Externa - Otomycosis
(3.86%), Vestibular Disturbance / BPPV (3.14%), Congenital Hearing Impairment (2.90%), Chronic
Otitis Media - Squamous Active (Cholesteatoma) (2.29%), Foreign Body in EAM (1.81%), COM -
Mucosal Inactive (Dry Perforation) (1.69%), Normal Ear and Hearing (1.69%), Tinnitus and Hearing
Loss (1.57%), Referred Otalgia (1.33%), Auricle Congenital Malformation (1.21%), Localized Otitis
Externa (1.09%), Traumatic Tympanic Membrane perforation (1.09%), Middle Ear Congenital
Malformation (0.60%), Tympanosclerosis (relevant) (0.60%), EAM Congenital Malformation (0.60%),
Auricle Benign growth (0.48%), Auricle Infection (0.48%) and other less frequent pathologies (7.54%).
See Figure 2.

    4. Screening of primary school children
    Otoscopy and hearing screening of 858 mainstream primary school children found: 49.5% Normal
ears and hearing, 25.6% Ear wax plug, 11.2% Otitis Media with Effusion, 7.8% Eustachian Tube
Disfunction, 1.2% Acute Otitis Media, 0.8% Chronic Otitis Media, 0.7% Foreign Bodies, 0.6%
Congenital Hearing Impairment, 0.5% Otitis Externa, 2.1% Others. See Figure 3.
    5. Questionnaire and screening of population under 5 years of age
    Family & medical questionnaire, otoscopy and Oto-Acoustic Emissions for a population of 593
under 5 years of age. Results: 45.4% Normal ears and hearing, 12.7% Otitis Media / OME, 0.8%
Chronic Otitis Media, 0.7% Congenital Deafness, 20.7% Other ear pathology and 19.7% require re-
testing or further investigations.

    6. Questionnaire and screening of workers exposed to loud noise
    These are the preliminary results derived from annual screenings of 210 factory workers exposed to
loud noise: Only 12.4% were found to have normal otoscopy and hearing, 46.2% suffered Acoustic
Trauma (Normal Hearing average for 0.5, 1, 2 and 4 KHz, but selective hearing loss greater than 25 dB
at the 4KHz), 17.1% Mild Hearing Impairment, 1.4% Moderate Hearing Impairment and 22.9% Other
ear pathology.

    The factories’ level of noise were: Soft drinks; Average Background Noise Level (40 different work
areas): 55-98 dBSP, Impact Noise Level: 75-115 dBSP. Electric power plant; ABNL: >140 dB SP,
INL: Not applicable, continuous noise 24 hours a day. Airport; ABNL: 60-80 dBSP, INL: >130 dBSP.
Milk processing factory; ABNL: 42-72 dBSP, INL: 61-88 dBSP. Personnel hearing protection devices
available shielded 35 dB in the case of “total insertion foam tips” and 25 dB when using “cup headsets”.

Conclusions:

        From each method, we have obtained useful information to assess the needs for each different
population group, facilitating the mechanism to prioritize specific health interventions. Further in depth
analysis of the data gathered will provide a clearer picture of what to expect when embarking a larger
scale programme.

    1. Literature revision
    Obviously the method with a highest risk of misjudging the real situation, as it depends on data
gathered or estimated by third parties, who may have not addressed the situation with the same
approach necessary to evaluate the local or regional situation, in our case, by underestimation. Still, it
can be a valid reference point to compare local findings, somewhere to start.

    2. Retrospective study on Deaf students4
    A most useful source of information, as it has given us a first hand insight into the severity of the
problem, the deficiency in human, financial and service provision resources, and the imperative need for
a well structured Public Health programme to address the Prevention of Hearing Impairment at all
levels. It has also shown us the need to establish ways to raise awareness in the general population and
amongst health workers and to create channels to direct people to the appropriate services.

    The disturbing delay in reaching a definitive diagnosis of Hearing Impairment, even for profound
deafness, cannot solely be blamed on the lack of initiative from relatives who long suspected a hearing
loss. It has, however, underlined the initial priorities we should concentrate on: raising awareness,
training health professionals and finding and developing the adequate means for diagnosis, treatment
and rehabilitation of ear and hearing problems, aiming towards the inclusion into a productive society.

    3 Internal service provision records
    It is very revealing to see that nearly 14% of ear complaints are due to impacted wax in the ear
canal. There is an almost universal habit in Bolivia, of using any kind of applicator (with or without
cotton wool) for ear cleaning. This explains such a high proportion both in children and adults.
    Sensori-Neural Hearing Impairment, not age related, as second ear symptom, correlates with the
third most frequent complain: Acute Otitis Media, both pathologies would have a smaller incidence if
the Primary health care would be universal and more accessible.
    More than 10% of self reported ear complaints to the outpatient’s department are related to Chronic
Otitis Media, whether Supurative (6.64%), Cholesteatoma (2.29%) or Dry Perforation (1.69%). This
shows the pressing need we face for secondary and tertiary level services for ear and hearing care,
including Hearing Instruments provision and maintenance.
    4. Screening of primary school children
    Considering that more than half of school age children screened have either abnormal otoscopy or
failed the hearing test, and that one in four have wax plugs, it is deemed necessary to raise awareness of
ear and hearing health in the schools, school parents and the community in general. An indicator of how
good school ear health is progressing could be the prevalence of Chronic Otitis Media at different
school ages over several years.

    5. Questionnaire and screening of population under 5 years of age
    The high proportion (1 in 5) of children who require re-testing or further ear and/or hearing
procedures before reaching a definitive diagnosis is a serious concern, as many parents will not take the
children back for retesting. Universal screening for neonates and throughout childhood would be ideal.
In the meanwhile, methods to facilitate retesting at primary health level, through community nursing,
health visitors or even by the parents themselves, need to be designed and put into practice. Parallel
development of early stimulation and especial pre-school education centres are also required.

    6. Questionnaire and screening of workers exposed to loud noise
    Although the Bolivian Labour Act contemplates the mandate for employers to provide a safe
working environment, to observe the noise level limit and to provide appropriate hearing protectors, few
are the factories that comply with these requisites in the Beni State, and the enforcement of the labour
law is not strong. In other cases, due to the high temperature and humidity in Beni State or simply for
convenience, workers decide not to wear the protective devices provided, despite the sanctions in place.

    The PPHI is trying to encourage employers to follow occupational health advice by reminding them
in writing the articles of the Bolivian Labour Act related to ear and hearing health, as well as the
handling of solvents at the work place. PPHI-Beni offers local factories, health advice and ear/hearing
screening for their workers, free of charge, but there is still a very limited response, despite their
knowledge of the high proportion of acoustic trauma and hearing loss amongst the noise exposed
workers (65% in our series).

        It is our final conclusion, that recording relevant data during busy daily service provision and
community activities, is very desirable, as it helps to identify the real needs and allows improvement on
time and resources management, by establishing the adequate priorities for the programme. Although
more information is still extractable from these data recollection exercises, the facts obtained from
recorded data are the key to open administrative doors at local or national governments, in the pursuit of
a well founded National PPHI in developing countries.9 The ultimate picture of the size of the burden
of Hearing Disability in Bolivia will only emerge after a Population Based study takes place, hopefully
in the very near future.


References:

1.     Population Census 2001/Projections. Economical data 2006.2007. INE (Instituto Nacional de
       Estadística de Bolivia) / WHO. In Indicadores Demográficos y Económicos. Web Page:
       http://www.ine.gov.bo and Government links.
2.     Estimación de la población con discapacidad en países subdesarrollados. OMS / WHO. 1997.
       World Health Organisation web page.
3.     Study of 16,880 persons with disability attended by rehabilitation programmes in Bolivia. JICA
       (Japanese International Cooperation Agency). In Realidad Social de las Personas con
       Discapacidad en Bolivia. JICA Reports. La Paz. (1999): p2-3.
4.     Ser sordo en el Beni, Bolivia: Manejo del Déficit Auditivo en países deprimidos. Santana-
       Hernández DJ, Santana-Hernández JL, Barboza I. ENT News Español 2004; vol 1(6): 6-11.
5.     Programme for Prevention of Hearing Impairment in Beni-Bolivia. Ear and Hearing conditions
       related consultations, self reported at Fundación Totaí’s ENT Service. 1 Jan. to 31 Dec. 2006.
       http://www.totaifoundation.com
6.     Resources. Smith AW, World Health Organisation and CBM-Christoffel Blindenmission. 2nd
       Regional Deafness Prevention Workshop, Costa Rica. Noviembre 2004
7.       Población integrada a la educación formal. Guevara M. In Ofertas Educativas para personas con
         necesidades educativas especiales en Bolivia. Guevara M, Dirección Nacional de Educación
         Especial, La Paz (1997): 60-3.
8.       The need of a Programme for Prevention of Hearing Impairment in Beni State, Bolivia. Santana-
         Hernández DJ. Journal of Community Ear and Hearing Health, 2006; 3: 17-32 Issue No. 4:
         p28-30.
9.       Setting up a Programme for Prevention of Hearing Impairment in Bolivia – Where to start and
         lessons learnt. Santana-Hernández DJ. Abstracts compilation: 1st International Conference on
         Prevention & Rehabilitation of Hearing Impairment. Beijing, China. 26th - 28th April 2007: p63.

Diego J Santana-Hernández MD
Fundación Totaí, Casilla 158, Trinidad-Beni, Bolivia

				
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Description: Data recollection at PPHI From Smith Andrew W congenital