Angelina Kakooza: The topic of interest and
that is the Tumaini Child Health Project. I would like to give you a brief of how we began
this project. It was conceived following a visit by one of the
NIH pediatric neurologists and that was Dr. Deborah Hirtz who came to
Makerere University College of Health Sciences in November 2006. During her visit, she gave us a talk in Davis
Lecture Theater about the opportunities for research at Fogarty International Center
and at the NIH. And she talked about the Brain Disorders in
the Developing World: Research across the
Lifespan. I expressed interest in pursuing this research
and following her visit, she put me in contact with a perinatal, an experienced perinatal
epidemiologist, Dr. Judith Grether. Our communication initially was by e-mail, but
later on we started-- as our discussion drew much more data, she
decided to come over to Uganda which was really a very good thing because
when she came on the ground, she was able to really see why I was pursuing
this particular interest in neurodevelopmental disabilities. So we entrusted other colleagues in my
department, namely Professor Sarah Kiguli and Professor Charles Karamagi, who joined
our team and we're able to write up this research project and later applied for
funding and fortunately was funded on the fast round. So as I mentioned, the funding for this project
is from Fogarty International Center and National Institutes for Neurological Disorders and Stroke (NINDS) and the funding
was for a two-year planning grant. That is from July 2008 to June 2010. In this presentation, I would like to go through
the definitions of neurodevelopmental disabilities, talk a bit
about the literature review, the situation of neurodevelopmental disorders
in Uganda, the aim of the project, the outcome measures, the long-term vision,
what are the challenges and the way forward. Now, neurodevelopmental disabilities are
identified as one of the greatest threats to global public health. As quoted from the WHO publication in 2006. When you ask yourselves, what are
neurodevelopmental disorders? These are a diverse group of chronic
conditions, often severe, that originated during neurological
development and typically assists throughout the life of an
affected individual. They are due to mental or physical
impairments from the affected brain and special senses in neuromuscular
systems. They usually begin at any point in development
up to 22 years of age and the impairments most often last
throughout a child's lifetime. Now, the etiology is diverse, they may be
congenital or they may be acquired through accidents, trauma or infections during
the early life. This cunning three, they have limited data
regarding the etiology and it's been postulated that it could lead to multifactorial causes
including genetics, environmental, prenatal, post natal, and miscellaneous contributors. Now, it has been mentioned that it's important to identify these developmental disabilities
earlier. In recent years, conservable evidence is
accumulated supporting the benefits of early intervention for improving long-term
outcomes for children with neurodevelopmental disabilities,
particularly autism spectrum disorders and other complex behavior on learning
disorders. This can be a primary, secondary, or tertiary
level. For example, clinical investigations have
demonstrated that even in the absence of special life intervention programs,
improvements in cognitive and language field in children with autism are more dramatic
between the preschool years and middle
childhood and have been observed from mid-childhood
to adolescence. This fact has actually leading many countries
to increase public awareness of the value of early screening for developmental-- early
screening-- the development of early screening tools to
develop, to identify young children at risk for developmental disabilities and the initiation
of intervention services. Now, neurodevelopmental disabilities are of
various types, and among the common neurodevelopmental
disability that often leads to severe impairments and which result in
considerable personal and public health cost are autism spectrum
disorders, cerebral palsy, epilepsy, mental retardation, speech and language
disorders, hearing impairments, and visual impairments. There are very few studies on the rate of neurodevelopmental disabilities among
children, most so in the developing world. And it is thought that there may be much more
common in the developed world due to multiple known risk factors such as malaria,
HIV/AIDS, malnutrition, poor obstetric and neonatal care. Professionals and planners have been urged
to assess the burden of these neurodevelopmental disabilities, so
as to take appropriate action in their
management, with Sub-Saharan Africa being one of the areas
in greatest need. The data on disability in Uganda is now
discussed on what we have currently is from the Population and Housing Census of
2002 which reported that 3.5 percent of people surveyed had one or more
disabilities. For the survey, disability was defined as any
difficulty in moving, seeing, hearing, speaking, and any mental or learning difficulty, which
would last-- which had lasted-- we expected to last six months or more. For the general population, 3.5 percent of the
people surveyed had one or more disability with higher prevalence in the northern and
eastern regions compared to other regions. The prevalence increased from-- with age from
3 percent for the age group 5 to 9 to 5 percent for the age group 35 to 39. And the most common disability was difficulty
with legs at 29 percent, followed by sight problems and hearing
problems. Majority of these disabilities are acquired with
diseases and illnesses being the lead cause in more than 50 percent of cases. And nearly 45 percent of these cases that was
surveyed at this time had not received any form of rehabilitation during the 12 months
preceding the census. This implied that they have either lack of
available resources for people with disability in Uganda, or facilities to manage these
people are hardly existence. Sorry. Due to the stigma attached to some of
these neurodevelopmental disabilities, many of the children were noticed not to
access health facilities giving inaccurate
records. And this has been found in studies done in
Kenya as well as studies done elsewhere in
Africa. This was a lack of consistent administrative
databases and medical records in the developing world to enable case
identification of neurodevelopmental disabilities. This is why Maureen Durkin and colleagues
developed a two-stage approach for population surveys for childhood disability
to answer this question. Now, this two-stage methodology that was
developed for population-based studies for childhood disability includes one stage
which is the first stage of screening door-to-door, followed by a
second stage of comprehensive assessment, examining what type of disabilities are present. And information on any other thing of severity of
the condition, the causes, any rehabilitation needs and referral for
appropriate services. Now, the stage one screening that was
developed by Maureen Durkin and colleagues used some instrument called
the "Ten Questions" screen. This "Ten Questions" screen was for surveying
children between the age range of 2 to 9 years, is administered by non-professional
community members. You ask the mother to compare her child to
others of the same age and cultural setting. And the answers are given in a yes or no some
formats. What is notable about this Ten Questions
screen was that there are no questions that were developed for autism spectrum
disorders at that time. Stage two involves the comprehensive clinical
assessment where the children who registered a yes response to any of the
questions were referral for further
assessment. This was necessary due to the inability of the
Ten Questions screen to actually establish an actual diagnosis. So this was carried out by a trained
professional staff in their respective disciplines. Now, what is the neurodevelopmental disorder
situation in Uganda? Neurodevelopmental disorders are a global
health problem whose burden is not clearly
defined in the developing world, Uganda inclusive. Apparently, there are no accurate figures for
Uganda on the burden of neurodevelopmental disabilities to permit
effective policy responses. And a large number of the cases with
disabilities in Uganda do not accept any form of
rehabilitative services. Furthermore, case identification methods with
neurodevelopmental disabilities in the developing world are hampered by lack
of reliable medical records and the Ten Questions screen that I illustrated
about earlier used to identify these cases does not address other
conditions like autism spectrum disorder. In Uganda, we have currently no screening or
assessment tool for neurodevelopmental disability. Now, the aim of our TUCH project, the Tumaini
Child Health Project was to establish and evaluate a three stage system for
surveillance of moderate to severe neurodevelopmental disabilities in
two pilot communities in Uganda. In addition, we wanted to establish an effective
interdisciplinary collaborative network of Ugandan and international clinicians and
epidemiologists. The fourth stage of our project involved a door-
to-door screening where a research assistant together with the
mobilizer went to the house of a child within the age range 2 to 9, ask whether the
child had any of those symptoms using our adapted tool. Now, our tool was adapted following a
technical advisory group meeting in which we adapted questions to involve other
conditions like autism spectrum disorders and added on other questions for vision to
make it more robust and come up with 23
questions. Now, these 23 questions were the once we
used for the door-to-door screening. Now, at the door-to-door screening, there was
a child who answered a yes. That child was a positive screen. If a child answered a no to any of the questions
and that was regarded as a negative screen. So, we collected all the positive screen
together with a sample of the negative
screens. Now, the negative screens included every third
negative child who are then referred to the second stage which was the core exam
with a medical officer at a health unit within that community where we had done the
screening from. Now, the medical officer at the health unit
would examine this child and decide, determine based on Ugandan pediatric
protocols that had been developed for this project becoming whether this child
required referral to specialist attention in Mulago Referral Hospital if indicated. That was the third stage. And at Mulago National Referral Hospital, the
specialist attentions included vision, hearing, speech and language, epilepsy, or cerebral
palsy, autism or-- mental retardation or cognitive impairment. So, the stages were three, door-to-door
screening as the first stage. The second stage was core exam with a
medical officer at the health unit. And the third stage was referral to Mulago National Referral Hospital for
specialist attention. Now, the main outcome measures of this
research project will be the development and
evaluation of the expanded screen up, 23 questions,
screen up questionnaire and the secondary outcomes will be
preliminary data on the prevalence of neurodevelopmental disabilities in Uganda,
development of a comprehensive training plan for screening and assessment of children with
neurodevelopmental disabilities, and establishment of neurodevelopmental
disabilities technical advisory group in
Uganda, and collaborative network of Ugandan and
International Clinicians and Epidemiologists. Our long-term vision for this project is to
establish a center for neurodevelopmental disabilities and
research at Makerere University College of Health Sciences in collaboration with the
colleagues in the United States. What are some of the challenges that we faced
during this project? Now, we start with the first challenge which
was administrative issues. Before we set out to begin this project, we have to establish institutional review board
permission from two centers. That was Makerere University College of
Health Sciences where I'm based together with California where my colleague, my-- the PI
for this project, Dr. Judith Grether, is based. Now, before you start such a project, there are
times that you cannot anticipate the delays that are involved in setting up such a project. There were issues that coped up because the
institutional review board at Makerere wanted
us to review the consent forms several times. This means that we have to keep revising
these consent forms and also have them
revised at the other side in California on several times
and by that time they have -- a lot of time between what we had anticipated
between the research assistant training and after starting of the field work. That caused a little delay and by the time we
had to actually start a study, a lot of time had been-- a lot of time had taken
place between when we had to train the research assistant on the actual
starting of the research project but we have to do some refresher training. Secondly, amongst the other administrative
issues that we faced was that the research assistance that we employed
often experienced delayed in getting the allowances. Now this is an issue regarding the fiscal agent
that you employ to run your project. We did not use the Makerere University
Institution, but we use another institution that was affiliated to Makerere University. Now there are issues of bureaucratic
procedures, signatures over checks that have to be issued require a number of signatures
before the actual amount of money can be realized. Now, all this bureaucratic procedure leads to
delay in terms of payment on time and is led to disgruntlement with the research
assistance which could-- which required us to reassure them, to ensure
that the work was done despite this hiccup. Then, as we were recruiting this research
assistance, we went through a process of advertisements. After the advertisements, we conducted a
series of interviews. Now, in the interviews, we tried to the best of
our ability to choose the best research assistance that
we thought could actually be of benefit to our project, that also realized when have
started training these research assistants, some of them were actually committed to other
project, but had much told us before that. So when these projects were reactivated, they
came to us and asked to be excused. That has meant we needed to train a new
batch of research assistants which was quite
cumbersome. Then in the development of the
neurodevelopment disabilities screening tool, remember that this Ten Questions screen that
was earlier developed by Maureen Durkin and colleagues did not cover the additional
domain of autistic-- autistic spectrum disorders and we wanted to
screen for this condition amongst our children. It has required us to develop these questions
that were relevant and that could be able according to what we
thought pick up this condition. Now, there have been various tools that had
been applied in the developed country, but their value in being applied to developing
countries is still questionable because there are issues like casual factors
and the way that people interpret the questions that have got to be put into mind. For example, in some cultures here in
Uganda, it's considered rude to look
somebody in the eye and yet the autism spectrum disorders we
want to find because the child have positive eye contact. So, such examples, a need to partition of
behaviors vary amongst the cultures. In addition, as we were developing this Ten
Questions screen, we had to translate it into a language that is understood by the
community in which we we're going to apply it. Now, we worked in two communities. That is an open community which is Kampala,
housing the capital city and the rural
community which was district where the language spoken
there is mainly luganda. Now in Kampala, it's more cosmopolitan in
English and luganda are spoken. So that require that I had to sit with the local
experts at the Department of Languages in Makerere University and translate this-- ensure that the translation into luganda was
pertinent and above translation was also pertinent then
pilot test this tool in Mulago National Referral Hospital on a
sample of 30 mothers with children with known disabilities and another sample
without known disabilities. Ask the mothers whether there were any
ambiguities or whether they understood the questions,
later engage them in a focus group discussion to obtain feedback on the wording and its
application. I know this requires time and a lot of care and
attention. Now, regarding those communities for
selection, as I mentioned earlier, we're watching two communities or two areas,
the urban which is Kampala districts and the rural which is Wakiso district. Now, before we went-- - - before we could start
working in these districts, we have to meet with several district
administration personnel before we could get their permission to actually start. Now, meeting the district administration
personnel is not an easy task. You'd go one day and find there's no one in
office that day. They have all gone to the field. You come back another day, they are maybe
involved in some other activities. They cannot meet you, "Can you come next
week?" You go the next week, you find they're involved
in several other activities. So this means that we have to incur extra cost
for travel. Make several visits to the district
administration before actually finally meeting with the concerned authorities. Now, when we meet with the concerned
authorities, you find that the authorities try at times to manipulate you in terms of which
community you are actually going to screen. We'd tried as much as possible to explain to
them that this is a random selection and there was no way that we were going to be
influenced in terms of selecting these communities. The way we call it-- We selected our
communities was by a class of sampling
strategy with probability proportionate to the most
recent census of the community population
size. We selected 10 parishes in each district from
a list of cumulative population ages and in Kampala district, we actually divided the
clusters of selection into the up skill that is the more well to do community and the
slum areas to get a bit of representation of the urban dwelling. And in each selected cluster, the interview
team with the assistance of the parish mobilizer known in the community
becoming the midpoints of the parish and then blindly selected the direction in which
all eligible households in that root will be screened until the desired
sample size was achieved. Explaining this to the community members
was a bit vague to them. The studies have-- dealing with
neurodevelopmental disabilities, we can even take you to these homes of these
children who have these disabilities, but we have to explain to them the truth. This is not the way that we want to carry up
these researches. It has to very unbiased and this is the strategy
that we have to employ. In addition, we noted that there was lack of up-
to-date local village records to determine the latest population size of the
village. So we have to use old records and remember
that a facility rate is 6.7, so most likely this village records were not
accurate at that time. Now, in the preparation of the communities, we
had to involve ourselves in a series of sensitization and community engagement
meetings, having representation of the district personnel that would be pertinent
to help us carry out this project. Unfortunately, you'd find that we had to
accommodate very-- quite a number of irrelevant personnel. These personnel were mandatory if we
needed to get the permission to have this study carried
out. And in addition, these personnel that were
irrelevant, we have to cater for their facilitation, we have to
cater for their refreshments, transports, and all these persons, we are not budgeted for
initially, but we have to bend because we needed the permission to
conduct the study from that community and
there was no way that we could jump this important people
according to them to be able to carry out our study. Now, regarding the data collection procedures,
we conducted these-- we conducted these
studies, in the morning would-- a team would collect,
get all the items that are unnecessary for the project, for the exercise in the field and
then go out to the respective homes, door-to-door with the village mobilizer to try to
find out-- to try and ask which children would be eligible
for us to recruit. Now, we noticed that our age range was-- our
age range was 2 to 9 years, but most of the
children in the higher age range who needed to ascend
because the institutional review board at Makerere College of Health Sciences
required that all children above the age of 7
needs to ascend for participation in a study. So most of the children that needed to ascend
were not available at the time of the screening, necessitating us to have the second or the
third visit before we could actually pick up these children's information. And by starting too early in the morning, we
found that some of these caregivers were still in the gardens and not available to answer the
questions. It required us to even move to the garden or
come back and revisit them to ask the
questions. Some of the caregivers were also busy with
household obligations like cooking the food, taking care of the home, or taking the animals
to pasture and see that the interview was
inconveniencing them. So that meant that maybe if there was an
eligible child in the particular household, we had to skip that house because the
caregiver found that the interview was going to inconvenient
her. Now, in the urban city, that is Kampala District,
many caregivers and parents were not at home during the weekdays as they were
away at work. And the only time to contact them was Saturday
or Sunday. So, the research team would come to our
house and find probably only a maid and the maid was given strict instructions not
to allow any strangers into the house. So that meant that on Saturdays and Sundays,
the research team had to make repeat visits to these homes to be able to interview the
parents. And a number of these caregivers in the urban
setting were not as were coming as in the rural setting. They wanted to know how are they going to
benefit financially and some were actually asking for a fee before
we could interview them. Now, these bill of state of child kidnapping in
Kampala city and other cities in Uganda and they were-- and these created fears
among the caregivers that these fears with recent child kidnapping made them
suspicious about the intentions of the research study and reluctant about
disclosing child information. Some parents in addition declined to be
interviewed because of stigma, this we noted specially with epilepsy with
some caregivers who actually had children having epilepsy, we
were told to be fool by the village mobilizer that, "You know, this
house they are going to-- there is a child who actually have epilepsy,"
and some caregivers because of the stigma around it, would fear or would be very reluctant
to disclose that actually their child could be having
epilepsy. Being-- The fact that we were actually asking
about conditions of these children could be having, some of this
children actually had acute illnesses at the time of the interview, conditions like
malaria, probably diarrhea, and parents actually wanted the medications
for the common diseases for there children, but this was and as you know, original budget
and the TUCH project tried to meet this cost where it's called but we were not able to meet
this expectation or the situations. Now, the time that we conduct the study was a
very tricky situation. It was a time of a political campaign and
voting, going on for the presidential election as well as for the representatives of the
districts. And this prevented some of the caregivers
from bringing their children for the scheduled appointments, they use the
aid they needed to go to vote or they were campaign managers or the--
actually they wanted to involve themselves in the political activity that was taking place at
that time. And we noted that some of the village
mobilizers were pretty backing on this situation of conducting the study. Informing the community members where we
we're participating that they were the ones responsible for
bringing us into the district so as to get most approach from the community
members. And sometimes they actually promise-- mostly
promise them mosquito nets, money, and other incentives to the family members as
a political gimmick to be able to obtain votes. Now we have challenges also with the female
village mobilizers. We noticed that they were not as good, like
managing the long walking distances
especially in the rural community and the increment with
the-- of the male village mobilizers were. What kinds of village-- female village
mobilizers complained that it was rather hard. The distances were too long for them and this
hampered the work progress [inaudible]. In conducting the assessment, some
caregivers did not show up for the medical
officer exam. This is the stage two after the door-to-door
screening. We found that the caregivers at a sudden time
were not showing up and this required us to make frequent phone
calls. Fortunately, we also have the Global
Positioning Systems coordinates of these
homes so we would use them also to help us identify
the particular home and go back and ask the mother, or the caregiver to come
back for the medical officer exam. Some caregivers actually book children who
had not been screened initially because they look at this as an opportunity. We went into our home, we screened children
whether they had a neurodevelopmental
disability and those who went positive and every found
negative were the ones who are called for the stage two for the medical officer exam. But some tribal parents took it as an
opportunity, "Why didn't I bring this other child? Possibly examined by the medical officer." So we ended up loading the medical officer
with quite a lot of work that was quite strenuous for them. In addition, the husbands, some husbands
refuse to let their wives come to the exams, for the medical exams or the specialty exam
because they were suspicious that probably their wives we're going to other
activities. We try to explain to some husbands and they
relented, but there were some who actually refuse to let their wives come
over. Some caregivers of the children who was
screened, those who screened negative because we have to get a sample of every third
child who was screened negative to come over for the medical officer exam. They realized that their children did not have
any problem. So they keep asking, "If my child doesn't have a
problem, why do I need to come up?" We explained to them that this is necessary for
our research project and we explained to them the reason why we needed them to
come over. Some did come, but others did not really
found-- find it necessary to come despite the
fact that we were catering for the transport, we're
catering for their refreshments, and were insuring that they really would get it
for during the time that they were here with us for the medical officer exam and the specialty
exam. Some caregivers also changed their mind after
the medical official exam. So, they would come for stage one screening,
stage two screening for the medical officer. Now the final stage three, where they have to
have a specialty examination, some caregivers change their mind and said,
"Well, I think I had enough, I don't think I'll come
back." And the fact that we are accepted that they
could decline at anytime of the study, we restricted their feelings and let it be. Now, the initial plan was to get-- when were
having the technical advisory group meeting, the initial plan was to have each child who
would be referred for a disability to be reviewed for all the disabilities that that
particular child was referred for. For example, if a child was referred for visual
impairments, epilepsy, autistic spectrum disorders, and probably
mental retardation. If that child would come and have all those
disabilities reviewed in one sitting, however, we realized that this was not feasible. This initial plan could not work because the
specialist in Mulago National Referral Hospital had
various other duties, duties of the state that
they had to care for, they also had other issues that they
have to deal with, and you find that the timing was really
conflicting. So, that necessitated us to actually transport
these children on several occasions
depending on that number of disabilities that they were
been screened for. So week one, probably would come for
cognitive impairment or mental retardation. Week two would come for vision, but even to
come for vision, it will require us to find out from the specialist, are you available at that
point in time, sometimes you say, you know I have to travel or probably I'll be out
of the country. So it keeps the patients waiting and of course
if they keep waiting, they get bored and then they decline. So, all those issues are to be factored in because we could not keep everything
working smoothly the way we wanted it and there are also limited numbers of
specialist and their demanding nature of their work could not put out initial plan into
practice. So based from all of these challenges, what is
the way forward to try to combat some of these challenges? Our advice that we-- you allow for adequate
time to process institutional review board
permission before the start of the project because the log time and the delay needs to
be factored in before you actually start the project. Now, if the budget line permits depending on
how much funding you get, it would be
advisable to train a number of research assistance to
have at least some that you can have on
standby in case others abscond the midway of the
project and this can prevent you from getting
disorganized. Because we have to make several visits to the
district administration and find sometimes they're not available,
sometimes they're in a meeting, other times they're out of the country, it would
be important to identify a liaison within the local district authority. This person would help to facilitate your
communication with the administrative issues at the local district so that you don't need to
incur extra transport costs or make visits where you may be failed to meet the people
that you'd want to meet and incur unexpected
costs which would be detrimental to your project
budget timeline. It will also be advisable to have a very
substantial contingency fund to fit up for unexpected expenses in the field and
research regarding school age children. Ideally should be done during the school
holidays when the children are around for the [inaudible] issues. Regarding the village mobilizer, many times
you find the local district tries to influence you to have village mobilizers who are either
influential within the community or they really have some association with the
people at the top. But try to recruit well-known, energetic,
versatile village mobilizers who'd be able to travel the great distances within the
community with ease. And before you stop the project, try to
familiarize yourself with the prevailing circumstances in the
community you are to walk in so as to avoid unnecessary delays. These delays could be hampered by things
like harvest season, circumcision season, political campaign season like in our place,
and these can cause unnecessary delays. And when dealing with caregivers, do no forget
the male figure, the husbands and fathers who equally need support on ongoing
counseling. You should exercise transparency at all stages
of the research study and invest in effective communication like mobile phones. We had-- We catered for mobile phone, mobile
money-- we loaded the mobile phones of our research
assistance to ensure that at any one time, the communication between the supervisors,
the research assistant and the field coordinators works through it. And in the rural areas where homes are fairly
distant from one another, it's advisable that a convenient location be
identified within the community to accommodate the research team. When we were in the rural community, we
identified a home or a house where the research team was housed. This was very, very convenient for us because
the research team was in one location, we were moving very short distances within the
community, we would meet at the end of the
day, discuss our shortcomings or what challenges
we've meet so that the next day, all of us are on the same
page. So, identifying a convenient location to house the research team involves particular
communities that you're going to working is very economical as well as
efficient. I would like to thank the TUCH-- the Tumaini
Child Health research team, Professor Sarah Kiguli, our core investigator,
Professor Charles Karamagi, to Mr. Keron Ssebeyla, our Project Manager and also our United States colleagues, Dr.
Judith Grether, who was very, very instrumental and very helpful on this project, Dr. Edwin
Trevathan, Dr. Robin Hansen, Dr. Lisa Croen, and Ms. Karen Smith. I also like to acknowledge the caregivers on
the children that participated in the study, the local district authorities in Wakison and
Kampala districts. The NIH Fogarty International Center and
NNIDS and the Department of Pediatrics and Child Health, Makerere University, Mulago
Hospital staff, and the very versatile TUCH researcher
assistance and study team. Thank you very much for your attention. I group a series of questions that I would like
to address at the moment. And one of the questions, two of the questions
have already answered in my presentation-- what's-- one question was from Dr. Kathleen
Michels, how did you get started on this research and what role the FIC NIH
brain disorders program play in starting and continuing the work? Probably at that time, the mic was not on at that
time. Probably, I can just repeat what I've said at the
beginning. The word-- These projects which is to Tumaini Childhood project was conceived
following a six successful application for an R21 planning grant from the Brain
Disorder in the Developing World: Research Across the
Lifespan. You may be asking yourselves what the words
Tumaini means. For those not familiar with swahili, it means
hope. And the slogan for our project is bringing hope
to the child. So I obtained information about this program. The brain disorders in developing world from a
visiting pediatric neurologist from the NIH, Dr. Deborah Hirtz, who presented a talk on the
Fogarty Center and the other NIH grant opportunities for
pediatric research at Makerere College of Health Sciences, Davis Lecture Theater in
November 2006. After expressing interest in pursuing this line of
research should put me in contact with an experienced Perinatal Epidemiologist
Dr. Judith Grether. We initially communicated via e-mail then later
Dr. Judith Grether came over to Uganda. We discussed further on my selected area of
research interest which was pertinent to the needs of the Ugandan children. We've interested other colleagues in my
department and then together we wrote up this project proposal, applied for funding,
and we're very fortunate to be funded the first time round. The second question was by Dr. Richard
Ethrow , what is the current state of screening for neurodevelopmental
disorders? How can we overcome these challenges? I think I explained that on this talk and given also possible solutions how we can
overcome these challenges. The other question-- I'm not certain about who
exactly asked, but the question was, how do we apply ethical values to populations
with low education levels and application of informed consent process? We-- Because it was a requirement for both of
our institutional review boards, that is the California, the Californian one for my
colleague in the United States and the Makerere University Institutional
Review Board requirement, we have to apply the informed consent
process for those people who had low
educational levels and were not able to sign, we use the thumb
print as a proof that they had actually agreed. We read them the consent form in a language
that they understood and when they understood what it was that we
are going to do, they show their acceptance by using the ink pad, pressing the thumb on
the ink pad and then pressing the thumb print on the piece of the consent paper. They keep the copy and we keep a copy. What are the practical-- The other question
was what are the practical ways of planning an applicant network on the
diagnosis and prevention of neurodevelopmental
disorders? Now, the TUCH project was a planning grant
and we have tried to demonstrate how we tried to develop a network of colleagues within
Uganda to try to set up a neurodevelopmental disorder network. We convened a team of experts which we call
the technical advisory group including experts from various fields, ear, nose and throat,
vision, physiotherapy or professional therapy, neurology, pediatrics, and all of these to
mention but a few all of these came together and form the technical advisory group together
with other colleagues, epidemiologist, commissioners from the United States and we
worked together to form a technical advisory group which then
was the one propelling or advising these projects within. Now, we can go borrow from this to set up an
African network for the diagnostics and prevention of neurodevelopmental
disorder. Set up, I mean, inform those or find out those
who are interested in your developmental disabilities. Now we have a webinar presentation series or
we can use the LinkedIn, make a group, interest group and then walk along that to try
and develop a network for diagnostics and prevention of neurodevelopmental
disabilities. The other question was, how do we deal with
the disparity in research trend of collaborating low-middle income scientist
when applying for collaborative research
grants? Now, you notice that the experience of neuro--
of scientists in the developing world is not as much as that-- or is not as great as that in
the developed world but it could be a good
thing if those who are reviewing these grant
processes could have that in mind that actually our experience is not as robust. I was pertinent that I was working with a very
experienced epidemiologist, Dr. Judith Grether, so she mentored me and she helped me and
we tried to work out these projects together. But in terms where it's just somebody
beginning, really need a lot of help and it's
advisable that these particular aspects that we may not
be as well experienced as other research
commission in the developed world should be put into
consideration for those that are reviewing and scoring our project proposals. The other question was from our principal from
Makarere University, College of Health
Sciences, Professor Nelson Sewankambo who is asking about the major ethical challenges that we
faced in this project. Well, amongst those that I can recall are
issues regarding these children not being
available because they were at school and sometimes
finding a husband or probably a husband who is reluctant to have his wife consent or the
wife reveal-- give us information regarding the child or
permit the mother of child to come over for father assessment and diagnostics. In addition, we failed-- sometimes the ascent
process was not really very well-done because some children-- we try and explain to
them what it is that we were trying to do and the mother would say "Whoa! I think they've understood." I think they've understood. So, sometimes these-- some of these ethical
problems were faced during the presentation or during the research project. Those are the questions that I received prior to
the presentation. And now I would invite any other questions
from those listening, I appreciate your staying
on and listening to my presentation and I look
forward to any questions. I had another question form Kathleen Michels
who says, "You had a lot of challenges." Yes we did. From the screening and followup you are able
to do what neurodevelopmental disability
problems that you identified for the children that were a
highest priority. From the screening and follow up you were
able to do what neurodevelopmental disability
problems, did you identify? Well, I think the question is, what children,
what were the... The neurodevelopmental problems that we
identified that were highest priority to followup were the ones that we set up to
investigate, and these were seven, autism spectrum disorders, hearing
impairments, visual impairments, cognitive
impairments goal, mental retardation, cerebral palsy and
epilepsy. That was our main focus. As you know that there are other development
disabilities like attention deficit disorder but we did not focus on that in a research
project. And if you have not answered question well,
please copy and you can type again. What-- the other question we have is from
Kristine Isaac who asked about what neuro development of problems
did you identify for the children that's where our highest priority for follow up. Okay, sorry, it was repeating capturing
question, okay. Yes another question from Kathleen Michels
was, was there any surprises? Yes there was surprises in that we had
expected to find a number of cases-- a number of children having visual problems
as we ended up having quite a few, I mean less than we expected in terms of
those who had visual problems. And regarding the children who had hearing
problem, we found quite a number that's had hearing
problem associated with other disabilities and these children who had hearing problems
had not been identified by or not been
identified by the caregivers or the caregivers had
identified them but were not really certain. And we found that on close diagnosis, some of
these children were actually had been going around or have been being treated for in their
homes with some attention but not that-- the attention that has been given to these
children for with hearing impairment had been quite
intense for the families so we were surprised to note that these families not actually been
able to cope despite the disability that they were facing with their children. Some other surprises that we found where
finding people in the urban setting who already
knew that their children has a disability but where
sort of like, "We shall come. We know about this but we're coming so you
don't need to remind us, we already know that our child have epilepsy,
or our child have this and this problem so we don't need you to remind us." So it shows that some patients or some
caregivers do know that their children have problems. It's either they're not seeking attention where
they supposed to seek it or are probably going else where, where they
believe the attention should be sort. Another question is, did you find that parents
value these diagnoses and wanted to pursue treatment? I've got the question from Judy Rich which
said, did you find that parents value these
diagnoses and wanted to pursue treatment? Yes, many-- I should say the majority of
parents value these diagnoses and they actually wanted to pursue treatment. This was more so, of those parents that who
were actually at a loss they had known that probably their child was not like other
children and somehow were not aware or they did not know when to take these
children. So some are really, although over very
enthusiastic to actually come and have their child assessed by the medical
officer and then go on for specialist attention. I've got another question from Kathleen
Michels who says, is there a high stigma for epilepsy and do they actively seek care? Are the drugs readily available to treat
epilepsy? Yes, there is a very high stigma for epilepsy in
Uganda and I think it is there for several other African countries. Epilepsy is viewed as a cause or something
that someone acquires because of something
bad, either the parent's did or something in the
family that has gone wrong. So if you are branded or let's say given the
diagnosis of epilepsy, if it something that is not to be gloried in. You either have to hide or you either have to
say if there's something wrong, and some children or some caregivers would
rather say, "My child has several convulsions," rather than saying that it is epilepsy. Unfortunately, the drugs that we have available for treating epilepsy are the older generation
drugs. Drugs like phenobarbitone, carbamazepine,
and-- sodium valproate is not as available as the
other phenobarbitone and carbamazepine. And as you know, this older generation drugs
are faced with several with other side effects and now is the era of
HIV. There is cross-reaction between this past
generation drugs, this older generation drugs with the HIV drugs. So having a problem or stigma with epilepsy
further on added on the issue of not enough drug compounds this problem. I think we heard Dr. Donald Silverberg entering
the room. You're welcome Donald if you have any
question. Yes, thank you, Dr. Donald, for the question. The question is, will the conduct of our study and its result influence public policy in
Uganda? The plans for dissemination of this study are
two-fold. We are going to have scientific papers
published from this work but in addition, we need to write up or we plan to write up
reports which reports are going to be shared on the
local scene. And the local scene includes the Ministry of
Health, Uganda, various non-governmental organizations that
are involved with disability and based on this information, we are also going to have
a dissemination workshop in which we're
going to call the important stakeholder concerning
issue of disability to come and seek what information we have to share
with them and we really hope and it's really our
hope that based on our findings, we will be able to
influence a public policy in Uganda. Thank you very much everyone for your
attention. I appreciate your staying on to listen to results
of the project and I'll hand over to-- If there's no any other questions, well I hand it
off to Jeff for any other things. Jeff McAllister: Great. I'd like to thank you once
again Dr. Kakooza for an excellent
presentation. And if there are no more questions, I'd like to
thank you all for participating. And I'd also like to read a note from Kathleen
Michels, I would like to remind everyone that the Brain Disorders in the Developing
World Program is accepting applications and the next deadline is January 10th. Angelina Kakooza: Thank you very much.