Respiratory illnesses in Aboriginal and Torres Strait Islander children: contemporary challenges?

Respiratory illnesses in Aboriginal and Torres Strait Islander children: contemporary challenges?


Before we begin today I would first like
to acknowledge the Traditional Custodians of the land that I’m on the
Whadjuk Noongar people and pay my respects to Elders past present and
emerging. So before you kick off I’d also like to note that this webinar today is
being recorded and it will be made available on the HealthInfoNet website
at a later date. So I’m very excited to introduce our two guest presenters today
so you have Dr. Kerry-Ann O’Grady who prefers to go by the name KA and Dr.
Kerry Hall. KA is an applied epidemiologist and senior research
fellow at the Queensland University of Technology’s School of Public Health and
Social Work and Institute of Health and biomedical innovation. Her
multidisciplinary teams research focuses on the pathways from acute to chronic
respiratory infections in children, with a particular focus on Aboriginal and
Torres Strait Islander children. The team’s work includes non-experimental
studies, vaccine trials, and trials of interventions interventions to both
prevent and manage disease. And we also have Dr. Kerry Hall. Kerry is a research
fellow at the school of Human Services at Griffith University. Kerry is
an Aboriginal woman from Cape York Peninsula and has been an endorsed
enrolled nurse for more than 30 years and an Aboriginal Health Practitioner
with extensive experience in Aboriginal and Torres Strait Islander health and
education. Her PhD project examines the incidence predictors and outcomes of
acute respiratory illnesses in urban Aboriginal and Torres Strait Islander
children aged less than five years in the community. Our two presenters today
were both the lead authors of a review that the HealthInfoNet released not that
long ago on respiratory diseases among Aboriginal and Torres Strait
Islander children. So at the end of the webinar we’ll have about 10 to 15
minutes for you to answer any questions and then after that I’ll be showing you
a couple of new products that the HealthInfoNet has been working on as part of
the respiratory review. So I’ll just switch my webcam off now
and I’ll hand over to KA and Kerry in Queensland thank you both. Thanks Millie
welcome everyone it’s Kerry-Ann here and Kerry there hi everybody
thanks for joining us we hope that you get a little bit out of
today we’re not doing it just a repeat of the review I think people can read
that so we’re just going to expand on some of the the points that we’ve raised
in the review with a particular focus on sort of the the absolute lack of data
that we really do have about respiratory illnesses in these children. So I’m just
going to hand over to Kerry to acknowledge Traditional Owners. Hi
everybody thank you, I’d like to we would like to acknowledge the Traditional
Owners of the land on which we meet today and pay our respects to Elders
past, present, and emerging. Just a couple of caveats before I go on. Aboriginal
Torres Strait Islander groups may vary with regard to geography socioeconomic
status and local customs. And Indigenous as a descriptor belies the heterogeneity
among cultures, lands, and belief systems that impact on perceptions of disease
and treatments. And caution is required and generalising data from often limited
information to all Aboriginal and Torres Strait Islander people particularly applying data
collected from remote communities to urban communities and vice versa. It’s a
bit of an overview on today so we’re going to talk about respiratory
illness in Aboriginal and Torres Strait Islander children: what are the gaps, what
are the challenges, and what needs to be done in the future. What we know: respiratory disease is
acute and chronic, 8% of disease burden compared to 2.5 for non-Indigenous
Australian children. 8% of the deaths. 31% self-report
chronic lung disease like chronic disease lasting greater than six months. Self report higher in non remote 35 than
remote at 18%. 9.5% of hospitalisations excluding
dialysis. 2.4 times the non-Indigenous rate. And COPD and pneumonia
are the most common diagnosis. There’s very little data or reports specific to
children. So what we have is what we predominantly use around the country is
is data from reports such as the health performance framework and
a lot of the data that we rely on to look at burden of disease and monitor
trends over time is actually pretty limited to hospitalisations and deaths
data. And the latest performance framework report from 2017 presented
the age standardised hospitalisation rates for all respiratory diseases by
Indigenous status and sex, and you can see over the
various states that in all states and territories the burden of the rate of
hospitalisations is much higher in Aboriginal and Torres Strait Islanders
than non-Indigenous Australians. The problem with a lot of the data in these
reports is it’s very difficult to extract out data specific to children
and and particularly in specific age groups they tend to get lumped into age
groups of less than 15 and 15 and over. The other thing is is that a lot of the
reports just use respiratory disease as an overall heading and so it gets quite
difficult at times to actually drill down and find condition specific things.
So a lot of disease will be lumped into ICD codes such as influenza and
pneumonia for the acute diseases and then your chronic ones of asthma and
COPD and as we’ll show a little bit later there’s some problems with that
when you’re actually trying to address specific respiratory conditions in
children. With respect to deaths data again it’s a bit of the same problem is
that trying to find good data it seems to all end up being lumped onto these
broad categories of respiratory diseases. What we can see from this graph from the
latest report is that we’ve still got this big gap between Indigenous and
non-Indigenous Australians, and while we seem to have a decline that was heading downwards in the first half of the 2000s we now seem
to have just plateaued out and nothing much has changed with even possibly a
slight increase again on mortality from these diseases. The reasons for that are
actually not all that clear at the moment. One thing we do know though which is
what Australia has done well is that our children infrequently die of
pneumonia now and that’s due to better clinical care rather than actually the
prevention of of pneumonia itself. The other problem that we have is that again
these sort of national and even statewide reports very muchly disguise
differences within regions and areas across the country. So the data that’s on
the slide now is from an assessment that we did here here in Queensland in 2011,
it was a lung health needs project and we mapped out respiratory disease or
chronic respiratory diseases by the Queensland Health service
districts. And as you can see there’s a quite wide variation within and across
the state and I think an interesting thing here is that a lot of the focus on
respiratory health in Australia in Aboriginal and Torres Strait Islanders to date has
been on those in remote areas. Whereas you see from here that at least in
Queensland it’s actually the regional areas such as Central West Darling Downs,
Southwest area, Mount Isa District in particular which have far higher rates
of disease than what we’re finding up in the areas such as Cape York and the
Torres Strait where there tends to be a lot of focus. But it even highlights
here that in the urban areas which is Metro North and Metro South there’s
still significant disparities between Indigenous and non-Indigenous
Australians in Queensland. So next it’s going to go on to the importance of
local data. This data comes from my PhD project which was looking at
urban children in a community setting. 39% of the children were from
single-parent families. 46% of Indigenous families have family from the Stolen Generation. 37.7% of
mothers and 45% of fathers did not finish high school. 42% of fathers
and 85% of mothers were unemployed.
76% of the households had an annual income of less than $52,000 and of that 76%
38% had a household income of less than $26,000 a year.
90% of parents and carers are on welfare. 5% had private
health insurance and scarily 78% of children are regularly
exposed to tobacco smoke via environmental or direct. So there’s been one
community-based pediatric study in the past ten years. They were children
under five years. ARI with cough incidence in 180 children. There was 24.8 child months at risk. 10.5 of those children
went on to experience recurrent ARI. 25% of those resulted
in a chronic cough and the most common reason for health service utilisation
was respiratory illness. Prevalence and risk factors were similar to remote
children and the cost of ARI (which has not been done in an Indigenous urban
population) was at $991 per child per year,
and approximately half of that was borne by the parents. And in some children it
was as high as nearly $1,500 and there’s a limited data on
health service utilisation and disease outcomes in these populations.
Similarly we looked at immunisation timeliness in this population as well. At the six-month mark when children
they should be up to being fully immunised about 47% of them are meeting the immunisation as per the Queensland
immunisation schedule. That data has been supported, our small community work has
been supported by a larger study by Hannah Moore, who looked at the
national data linkage study about immunisation timeliness and coverage in
subgroup populations. Parent/carer perspectives: there’s a lack of
studies addressing perspectives of parents, carers, and communities. Bell in
2016 did some qualitative work before my
PhD study started, so she looked up some of the families and we did many focus
groups with that looking about parental concerns around respiratory illness.
I was just going to talk about a case that came out of my work. This little
girl was for 4 years and 50 weeks old when I approached her mother so she
scraped into the study by two weeks and she was at that age and in that previous
four years her mother had been told she’d had a chronic cough. She’d been
coughing since she was one, her mother had been told it was poor
behavior, the child was putting it on. It was bad parenting, all sorts of other
social factors that were apparently making this child cough and chronically
ill. She was on the program for two months and was ultimately diagnosed with
bronchiectasis. So that’s the sort of thing the mother hadn’t been listened to
or heard for the previous four years so we did hear a lot of that. Work by
D’Sylva has supported our findings it’s a qualitative study that’s just come out
of WA. It’s lack of information about health literacy and the sense of
disempowerment and belief that nothing will be done because doctors or the
medical professions don’t listen to these parents, or cough is normalised
as being a normal part of growing up. The other thing that’s that’s come out
in our studies that we’ve been doing is associations with the historical trauma
and it’s one of those things that everybody everybody talks about in the
impact of things like Stolen Generations on health but they’ve not and there’s
quite a few qualitative studies that are coming out now but there’s very few
studies that have actually started to go what’s the quantitative associations
between this trauma and actual disease. In
one of the community studies we did here even though it was a cross-sectional
survey, being connected to the Stolen Generation increased the risk of having
respiratory symptoms by nearly three and a half times so that’s the adjusted odds
ratio that’s adjusting for all other factors such as age and sex and smoking
and and it was the strongest predictor of respiratory symptoms in these young
children. Being connected with the stolen generation was also associated with the
higher cost of illness over a 12-month period which makes sense if these
children are having more symptoms and more recurrent infections then it’s
going to be costing those families a lot more. There’s now, I’m not sure if people are
aware, a large cohort study being set up by Ray Lovett at ANU in Canberra which is
actually going to focus on this association between the Stolen
Generations and actual physical health and well-being in Australian Aboriginal
and Torres Strait Islanders and that’s a large study that’s being done across the
country. And I think the other thing that’s highlighting this is the latest
AIHW publication which has looked at the links between Stolen Generations their
descendants and various selected socio-economic and health outcomes. And
on this next slide we can see that chronic health conditions are far more
likely in descendants of those from Stolen Generation than they are in descendants that weren’t from the Stolen Generation, and you can see
up there that ask that your respiratory conditions such as asthma, bronchitis and
emphysema are prominent in that burden of disease. So I think there’s going to
be a lot more work coming out now looking at that relationship between
historical trauma, the Stolen Generations and actual physical health and
well-being rather than the traditional things we focus on such as smoking and
diet and nutrition and exercise etc. We know from the review if
you go through that that there’s there’s a whole lot of gaps on respiratory
disease and Aboriginal and Torres Strait Islander children, most of the
studies and the data that we do have now is more than 10 if not 20 years old, and
given changes in things like immunisation schedules, differences in
implementation of various management guidelines, all of that sort of thing we
really don’t have any contemporary data that can actually give us a really good
idea of how where we’re tracking with respect to the burden of disease other
than this general category of hospitalisations. And given that a lot of
people are now being more frequently managed in the community particularly
with respiratory illnesses I think if we continue to rely just on
hospitalisations data we’re going to be missing out on a lot of important
information. We have a significant lack of data by urban/rural/remote and
different geographic regions of the country, so even most of the work that
comes out around respiratory illnesses is being done in Western
Australia and the Northern Territory, and as we can see from some of our work in
Queensland there’s a lot of similarities but there’s also a lot of differences. Also we have a lot of, a large amount of gaps on the etiology of disease in
children and where we can actually intervene has been largely under study.
So in in amongst all of that, the data on Aboriginal and Torres Strait Islander perspectives
are really scarce so as Kerry said there’s now a couple of qualitative
studies coming out, they’re actually starting to look at what parents and
carers perspectives of respiratory disease are in their children, and the
effects of it on their children, their families, in their communities. We also don’t have things such as
health-related quality of life tools that have been validated for use in
Aboriginal and Torres Strait Islander children that can actually be used as
patient-reported outcomes in both clinical and popular public health
studies and and interventions and that work is only just starting now.
There’s a group in Sydney starting to develop a tool for adults, and we have a
student within my group who’s developing one for children. The challenges: longitudinal studies are
required commencing in the prenatal period with long term follow-up.
Expensive and logistically difficult with complex populations.
Diagnostic challenges remain including coding, influencing both sensitivity and
specificity of case definitions. Normalisation of cough is common
and problematic. While the focus on social determinants is important, however
interventions are needed now to reduce the burden and finding Aboriginal and Torres Strait Islander researchers and clinicians to lead and guide the work. Some of the
challenges around aetiology, this is some work that’s been done on the prevalence
of viruses and bacteria in urban Indigenous children. So we try and target
things such as vaccines and even the use of antibiotics, and unfortunately
determining aetiology in respiratory illnesses in children is is challenging
particularly lower respiratory tract infections because sticking an endoscope
down and taking a lung, doing a lung tap or getting lower airway specimens is
just not feasible in most settings. So a lot of studies and even clinically
would be relying on the good old nasopharyngeal swab or NPA, and yet the
work that’s now becoming, there’s several places around the country that are now
showing that those upper airway specimens are really unreliable given
these children have higher prevalences of viruses and bacteria. And co-detection
of both viruses and bacteria even then when they’re well, so trying to work out
what’s what’s the causative bug gets particularly challenging. This was also
highlighted in a study that Anne Chang did in Central Australian
children looking at the relationship between upper airway microbiology and
respiratory symptoms in children that had been hospitalised with pneumonia and
there was virtually no associations that could be identified with any of the main
causative organisms which were found in upper airway specimens. So even just sort
of as I said trying to target the bugs causing these infections is particularly
challenging because we can’t quite work out what’s the main organisms
responsible at the time a child is is sick. So some of the other data
challenges that we have, this is some other stuff that came out of Queensland
if you look on here this is a table that says the average annual age specific
COPD hospitalisation rates per hundred thousand population.
If you actually look there’s actually COPD hospitalisations in children under
the age of 15. COPD is not a pediatric diagnosis so this is hospitalisation
data, and this has come about because until recently there was no code
specific to bronchiectasis so they were all been chucked in as COPD. That has now
recently changed in that bronciectasis has been added to the codes from July
2018, so hopefully we can even get some better data now on children’s
hospitalisations for chronic respiratory diseases other than asthma, whereas
previously they were all just being chucked in under adult diagnosis. We have
several funding and policy challenges and some of these are experiences I’ve
had in a couple of arenas over the last couple of years. We were doing very well
at stopping our children dying from respiratory diseases such as pneumonia.
Unfortunately what that leads to is a bit of a decreased attention on those
diseases. We don’t have the the photos of
you know children dying of pneumonia that match those of say whooping cough
for instance, or a child who’s dying with cancer and so it sort of tends to
get overlooked because it’s not a major cause of death in these children. There’s
also a very big focus on COPD and asthma given the burden of disease in adults
and there’s much less attention paid to pediatric disease, yet pediatric
disease is the key predictor of of adult lung disease, it’s now quite a fair bit
of evidence that the more respiratory acute respiratory illnesses you get in
the first couple of years of life the more likely you are to go on to develop
COPD irrespective of smoking status and yet we’re still not getting enough
attention paid on the respiratory health of young children. Getting pharmaceutical
companies and vaccines to participate in some of these studies is really hard.
We just had an experience last year where we put in a grant for vaccine
intervention in these children and the major response from reviewers was that
the study should be funded by industry not the government and that has its own
problems in itself. Some of the problems that we have in getting good evidence
and good data is the size of the study population that you need to demonstrate effects is so big that the studies become largely
unfeasible, particularly if you’re trying to do those in remote areas they
become prohibitively expensive. And there’s also a bit of an international
perspective I was at a large WHO meeting a couple of years ago and we
were talking about respiratory disease in kids and that you know we have this
excessive burden in Aboriginal and Torres Strait Islander children and that some
really high quality studies and work can be done in those settings that could be
used to inform processes in developing countries. And the general consensus was
that Australia is a rich country we shouldn’t be focusing on Aboriginal and
Torres Strait Islanders, it’s the Australian Government’s
responsibility to fix it and pay for it and you can sort of see where
that picture comes from but it sort of shows on a bit more of a global level
where the problems we face in our own backyard actually sit. So how data
can lead to change: comprehensive assessment of lung health and associated
services in Queensland led to the establishment of the specialist respiratory outreach service, which is an
Indigenous respiratory outreach service which covers Queensland, from Brisbane up
to the Torres Strait in both adult and pediatrics. From that there was also
spirometry training for Indigenous Health Workers and there’s been a suite
of educational resources that came out of that. studies in primary care/ED
of our own children lead to change in clinical practice and funding of
interventions for an RCT. And detailed analysis of epi, micro, and clinical data
from children with chronic disease led to NHMRC funded trials of maternal
immunisation. There’s an international bronchiectasis registry established with an Australian site. The first action plan from
the National Lung Foundation looking at lung disease has been sent to the
Federal Government. And bronchiectasis was added as a code to the DRGs in July
this year. What’s needed: so most of the studies in Aboriginal and Torres Strait Islander
children are more than 15 years old so we need a repeat of those studies and we
need to focus I think on the importance of a whole life perspective just not now
but in the antenatal period because it’s becoming more known that what happens in
the antenatal period can have lifelong effects. Acknowledgement of heterogeneity
between communities and sites and states. Recognition of respiratory
disease took all cause morbidity and mortality, and community and provider
education and engagement research is a powerful tool for achieving this. So just some of the the things that
we’re doing here to address some of those things we have a number of
randomised control trials that are now going on so we’ve just completed an RCT
of an early intervention a clinical management plan in chronic coughing
children, so we have this intervention implemented at the transitional phase
from acute to chronic cough. 45% of participants in that trial are
Aboriginal and Torres Strait Islander and those results will be hopefully once
I get the analysis done first paper should be submitted early in the new
year. We also received funding based on our local data and we had an Aboriginal
Medical Service that asked for us to address timeliness in their community,
that led an RCT of an intervention to improve timeliness. We enrol
mums while they’re pregnant and follow the babies until they’re eight months of
age. And that study has finished recruiting and the last of our babies
has been born and finishes up in in May, the last bub then so we’ll have data
that comes out of that but the preliminary data that we have suggests it
looks as if the intervention is looking promising. We’re just kicking off
a maternal vaccine trial of the ten valent pneumococcal protein D conjugate
vaccine, giving that as a single dose between 27 and 35 weeks gestation and
following the babies till they reach 12 months of age. With infant the
primary endpoint there’s a whole lot of immunology and microbiology and
fancy lab stuff that’s going on with that. That’s funded by the NHMRC, Anne Chang is doing a couple of trials
on the duration and types of antibiotics for children with pneumonia and
bronchiectasis. We finished a vaccine trial of the ten valent pneumococcal
protein D conjugate vaccine in children with with chronic lung disease. We have
just received NHMRC funding for a trial looking at tailored exercise therapy for
children with bronchiectasis, so the rationale behind that is we know these kids have
difficulty engaging in routine exercise so a pilot study done here
demonstrated that a tailored exercise program improved clinical outcomes
quality of life and lung function so that study is now being extended to a
full RCT. And Anne’s just got funding to do a
trial of tailored bronchiectasis management plans in kids with
bronchiectasis. Other things that we’ve got going on here is there’s actually
several cohorts of the development of chronic cough post acute respiratory
illness. We have a student who is developing the parent proxy paediatric
health-related quality of life tool for use in Aboriginal and Torres Strait
Islander children, and the plan for that is to develop a respiratory specific tool
that can be used. There’s qualitative work going on and
another one about to be started, which will be starting next year on perspectives of
maternal immunisation which is getting really important given there’s already
two vaccines for pregnant mums which we know the uptakes remain poor. In the next
five years there’s going to be an RSV vaccine for women in pregnancy
and probably a couple of others that are still in the pipeline. So we’ll have a
crowded infant schedule but we’ll also start to see a crowded maternal schedule,
and so a lot of work needs to be done to have a good understanding of what the
issues around that are going to be. There’s a long term cohort study going
on the long term outcomes of protracted bacterial bronchitis, and we have several
studies from different populations where we’re looking at detailed costings of
acute respiratory illness and the associated interventions. So there’s
that’s just sort of some of the stuff that’s being done here with
collaboration with partners in the Northern Territory, WA and some of the
Southern states as well as in Malaysia, and Alaska, and New Zealand. So that sort of
wraps up our short but sweet overview and just want to acknowledge all the
work that we do is a contribution from a very large number of of
collaborators and families and research groups from around the country so that’s
it from us and we can hand over Millie. Excellent thank you very much
to you both for that excellent presentation. I’d just like to open up now
for questions so if anyone has any questions feel free to type those in the
chat box and we’ll get KA and Kerry to answer them as they come up. We’ll give
it a couple of minutes we’ll give them a minute or two, and if we don’t get any
questions coming through what we’ll do is we’ll switch over and have a quick
look at the video and the infographic and people can think about questions
or type any in the meantime. Ok doesn’t look like we’ve got anyone typing
anything so while we’re waiting we’ll just switch over and have a quick look.
So you should now be able to see the homepage of the HealthInfoNet website
and basically as part of our commitment to making knowledge more accessible when
we do our narrative reviews we also like to develop a suite of resources to
accompany these reviews so we’ve been working on an infographic and a short
video which kind of aim to provide a quick summary of some of the key points
contained in the Review of respiratory health among
Aboriginal and Torres Strait Islander children. So you can find these if you go
to the learn menu at the top of the page and then you just navigate down to
respiratory health under health topics. So the respiratory health section is
kind of the main section on the website where you can find all the information
on respiratory health and it’s split into content types such as asthma, lung
cancer, risk and protective factors, and more and if you scroll down a little you can see we have a knowledge exchange product section down
here. So the first one I’ll show you is the fact sheet. We just scroll down and
click on this to just make it a little bigger. Ok so this is the factsheet we’ve
developed and basically it’s just a one pager with some of the key information
that KA and Kerry have highlighted in the review and this is all accessible on the
website so if you want to take a closer look please go ahead. And then going back
to the respiratory section we’ll just have a look at the video so I’ll just get you
to mute your own microphone KA and I’ll put the volume up really loud so
that everyone can hear this. Respiratory illnesses in Aboriginal and Torres
Strait Islander children are series important and the progression to chronic
lung disease is mostly preventable. Respiratory conditions of concern among
Aboriginal and Torres Strait Islander children include both acute and chronic
conditions. For acute conditions these include acute respiratory
infections like influenza and broncholitis. For chronic conditions
these include asthma and bronchiectasis. Currently there is not a lot of data on
the status of respiratory health among Aboriginal and Torres Islander
children, but what we do know is that in 2012 to 2013 one fifth of Aboriginal Torres
Strait Islander children had a long-term respiratory condition. In addition in
2014-15 Aboriginal and Torres Strait Islander children were up to two times
more likely be hospitalised for respiratory conditions
compared to non-Indigenous children. Respiratory conditions
contribute to the burden of disease for Aboriginal and Torres Strait Islander
children. Lower respiratory tract infections were the eighth leading
contributor to the burden of disease for girls five years old and younger.
Upper respiratory conditions were the 10th leading contributor for girls 5 to
15 years old, and asthma was a leading contributor to the total burden of
disease for all Aboriginal and Torres Strait Islander children. Risk factors
for respiratory diseases include environmental factors like overcrowding
and pollution, unhealthy diets, low birth weight, exposure to tobacco smoke, anaemia,
and socioeconomic status. There are many prevention strategies
that can reduce the burden of respiratory disease for Aboriginal and
Torres Strait Islander children, including a focus on child lung health, improved
infant health, healthy diet, reducing environmental tobacco smoke, vaccinations,
prevention of smoking among young people, and education and empowerment of parents and carers. Respiratory diseases can have long term impacts across the
lifespan. Despite this there is a lack of current available data. There is also a
need for adequate data on children in urban and regional areas. This
information will be crucial for ensuring programs, strategies, and interventions
are relevant and acceptable. However there is much they can be done now to an
able Aboriginal and Torres Strait Islander children to breathe easy
through their lifetime. Excellent so that’s the video what I’ll
do now it doesn’t look like we have any questions but I’ll pop up the slides
again and that will have our contact details on there so if you’d like to get
in touch with either KA, Kerry or myself you are very welcome to
do so if you have any questions later on or if you have any feedback as well
about the video so that’s our details there. Alrighty I guess we’ll wrap up
unless anyone’s got any other comments and thank you so much to Kerry and Kerry-Ann we really appreciate you taking the time to
have a quick chat to us today it was great, thanks very much.

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