Living with Polycystic Kidney Disease - Chronic Kidney Disease: A Silent Condition

Living with Polycystic Kidney Disease




IT IS A DEVASTATING DISEASE
THAT HAS NO TREATMENT OR CURE
AND EFFECTS MILLIONS OF PEOPLE
WORLDWIDE.
WE ARE TALKING ABOUT
POLYCYSTIC
TO THE DISEASE.
JOINING US NOW IS SOMEONE WHO'S
HERE TO SHARE HER SURVIVAL
STORY.
THANK YOU FOR BEING HERE.
GOOD MORNING.
TELL US ABOUT YOUR STORY AND
WHAT YOU WANT TO DO TO HELP
OTHER PEOPLE.
TODAY IS AN EXCITING DAY.
IT IS PKD AWARENESS DAY.
I WAS DIAGNOSED WITH THIS
DISEASE WHEN I WAS 10 YEARS OLD.
I HAD A KIDNEY
TRANSPLANT 12
YEARS AGO AND TODAY IS A DAY
WHERE WE ARE USING VOICE IS TO
SPREAD AWARENESS.
NOT MANY PEOPLE KNOW ABOUT THIS
DISEASE BUT IT HAS HAD A
DEVASTATING IMPACT
.
WHAT ARE SOME OF THE WARNING
SIGNS?
WHAT CAN PEOPLE DO TO LOOK OUT
FOR THIS?
THIS IS ONE OF THE MOST
COMMON LIFE-THREATENING GENETIC
DISEASES.
I WAS DIAGNOSED WITH HIGH
PRESSURE WHEN I WAS 10 YEARS OLD
AND WAS SENT FOR AN ULTRASOUND.
WHAT HAPPENS WITH THIS DISEASE
IS THIS ALLUDES THE KIDNEYS AND
DETERIORATES THE FUNCTION.
AT THIS TIME, THERE IS NO CURE,
SO IT'S ONLY DIALYSIS OR
TRANSPLANT AS AN OPTION AND I
HAD DIALYSIS AND TRANSPLANT.

I'VE BEEN USING MY FIRSTHAND
KNOWLEDGE TO HELP OTHERS.
WHEN YOU SAY PKD, PEOPLE DON'T
LOOK -- PEOPLE DON'T KNOW WHAT
IT IS.
HIGH BLOOD PRESSURE CAN BE
ASSIGNED AND ALSO SOMETIMES
PEOPLE GO TO THE DOCTORS TO HAVE
THIS RUPTURE.
THERE ARE COMPLICATIONS THAT
COME FROM THIS DISEASE.
IT AFFECTS EVERYONE ON MY MOMS
SIDE OF THE FAMILY.
IT'S GREAT YOU ARE SHARING
YOUR STORY AS WELL.
THERE IS THE PKD FOUNDATION.
IT'S THE ONLY ORGANIZATION IN
THE UNITED STATES HELPING TO
FIND A CURE AND DO RESEARCH.
I ALSO WRITE A
WEEKLY
INSPIRATIONAL BLOG.

https://www.youtube.com/watch?v=Oyy7OByCu1I


Chronic Kidney Disease: A Silent Condition




Hello, I'm Norman Swan.
Welcome to this program on chronic
kidney disease, a silent condition.
It's often preventable,
and it's said to be silent
because up to 90% of kidney function
can be lost before symptoms are evident.
With ageing and the diabetes epidemic,
more and more Australians are having
either dialysis or transplantation
for end-stage kidney disease.
One in seven Australian adults
over the age of 25
has some degree of kidney disease,
and chronic kidney disease
constitutes nearly 10% of all deaths
and more than 1.1 million
hospitalisations.
It's common
amongst Indigenous Australians,
who are six times as likely as other
Australians to be receiving dialysis
or to have had a kidney transplant.
Death rates from chronic kidney disease
are between 7 and 11 times higher
in Indigenous men and women compared to
non-Indigenous Australians.
This program will emphasise the need
for a targeted approach
to prevention, detection
and the management of people
with chronic kidney disease.
It also examines the need
for early detection
and the delivery
of chronic kidney disease care,
which is not necessarily
straightforward,
with a specific focus
on Indigenous and rural populations.
There are
a number of useful resources available
on the Rural Health Foundation's
website -
Now let's meet our panel.
David Harris is a nephrologist
and professor of medicine
at the University of Sydney.
- Welcome, David.
- Evening.
Tim Mathew is the medical director
of Kidney Health Australia.
- Tim.
- Evening, Norman.
Paul Snelling is a renal physician at
Royal Prince Alfred Hospital in Sydney.
- Welcome, Paul.
- Good evening, Norman.
Beres Joyner is a GP and
a specialist in public health medicine,
and is based
in Rockhampton in Queensland.
- Welcome, Beres.
- Good evening.
Anne Blong is currently the chronic
kidney disease nurse practitioner
for Townsville Health Service District.
- Welcome, Anne.
- Thank you.
Are there many nurse practitioners
around in Townsville?
About 11, I think.
11? That's more than I thought
there were in the whole of Australia.
They're not all doing
chronic kidney disease.
Last but not least is another
nurse practitioner, Lesley Salem.
Lesley is a nurse practitioner
for the Integrated Chronic Care
for Aboriginal People program
at Hunter New England Health.
Lesley is a descendant of
the Wonnarua Nation in New South Wales.
- Welcome, Lesley.
- Thank you very much, Norman.
Lesley, tell me about the impact you see
of chronic kidney disease
on Aboriginal communities.
It's a two-edged sword
here in New South Wales.
I see the overall incidence
and prevalence
across Australia as being very high.
In New South Wales,
because of the vast distances,
we have large groups of missions,
small towns,
that have no GP services
or very limited GP services.
So I think we have poor recognition,
and we underestimate
the impact in New South Wales
of kidney disease and
the consequential cardiovascular disease
on Aboriginal people.
What personal and family impact,
and community impact, do you see?
Personally, I have a father
who never smoked or drank
and still had a heart attack at 49,
so I've always been quite passionate
about the health of Aboriginal people.
But I've been working in nephrology
for 26 years, and what I see
is a lot of Aboriginal people
not coming to the major town centres
when they're referred
for treatment of kidney disease.
I think there's a paucity of treatment
going on in rural and remote areas.
Anne, do you agree?
Yes. I think that sometimes remote
Aboriginal people don't attend hospitals
because they see it as some place
that you go if you're going to die.
What are we talking about here, Tim?
What is chronic kidney disease?
Is it one disease?
We talk about it
as though it was one disease.
In truth, there are many
different types of diseases
which cause damage to the kidney.
But it's a useful concept to consider -
chronic kidney disease as an entity -
to find there's either a reduction
in the efficiency of the kidney
or the presence of kidney damage, as
evidenced by abnormalities in the urine.
And causes, David?
The most common cause in Australia
and worldwide now is diabetes.
Number two is glomerulonephritis
and number three hypertension.
NORMAN: Glomerulonephritis?
Yep, different varieties.
IgA is the most common.
NORMAN: In Aboriginal communities, Paul,
what's the commonest cause?
Increasingly, it's probably diabetes
or a metabolic syndrome,
but that's a bit simplistic
in some ways.
Our thinking is it's probably
a whole-of-life disease in many ways,
from early-childhood damage right
through to accumulating risk factors
as one ages.
I don't think it's as simple as saying
one disease. It's a whole-of-life story.
And, of course, Beres,
what we miss with chronic kidney disease
is the impact on the heart.
Most certainly.
I see chronic kidney disease
as being a very important risk factor
for cardiovascular disease.
While I think chronic kidney disease
is important as a singular concept,
I think it's most important
that we actually consider it
as one of the vascular risk factors.
Do you think that's generally known,
Anne?
No, I don't think it is.
I think that people think
that if they've got kidney problems,
they probably have diabetes,
and if they get that under control,
there's no other problems.
But I think even
early chronic kidney disease
causes 10 to 20 times
the cardiac risk factors.
Do we know why, Paul?
It's certainly through accelerated
cardiovascular disease the risk comes.
And it's probably through both
an association with kidney disease
being accelerated by
vascular risk factors -
hypertension, diabetes,
hyperglycerolemia -
but also with reduction
in kidney function
there are probably other changes
that affect blood vessels -
changes in inflammation, oxidant stress,
changes in the different lipid profiles.
- But it is an independent risk factor?
- It's an independent risk factor, yeah.
How strong an independent risk factor,
Tim?
It's probably
about as strong as cholesterol.
It probably increases the risk
by three to five times,
depending on how you assess it
and look at it.
It is one of the necessary preclusions
to using the new absolute-risk tool
assessment.
You must measure kidney function first,
because if you have a reduction
or you have some important CKD,
you shoot to the top of the tree
as a high-risk person.
So how much of it is around, David?
Well, chronic kidney disease
is in fact a very common disease.
It's not recognised how common it is.
So one in seven Australians have
some evidence of chronic kidney disease,
and up to one in three Australians
are at risk
of having chronic kidney disease
in the future.
That's a substantial proportion,
and getting bigger.
The contribution of ageing
and type 2 diabetes?
As I mentioned, type 2 diabetes
is the commonest cause
in Australia and worldwide.
It's now over 30%, getting up to 40%
of cases are due to type 2 diabetes.
Certainly, ageing does contribute a lot.
One of the difficulties in this area
is distinguishing
ageing, the normal ageing,
from abnormal ageing of the kidney.
NORMAN: Tell me more.
Well, as you get older, your glomerular
filtration rate declines with age,
and so it becomes difficult to know
whether a reduction in GFR
in the older age group is
just part of the normal ageing process
or whether that patient
in fact has chronic kidney disease.
And what are the risk factors, Tim?
Because people talk about smoking.
Yes, there are seven risk factors which
we would like everybody to be aware of,
and they feed into those
who need to have kidney tests done,
so they're very important.
Smoking, obesity,
family history of kidney disease,
anyone with diabetes,
anyone with high blood pressure,
anyone who's over the age of 60
and anyone, of course, who's an
Aboriginal or Torres Strait Islander.
So they are people who merit, what,
screening?
They merit,
according to all the guidelines
and the Red Book
and every way you look at it,
a kidney health check, probably
on an annual or biannual basis.
Beres, what do you understand
by a kidney health check?
I'd actually wrap it up, again,
in a health check looking at
cardiovascular risk factors.
But specifically looking at the kidneys,
we're looking at an eGFR
and also looking at a urine test,
and, in a general practice setting,
if you can get a dipstick urine,
looking for protein or blood.
We've just done a series of programs
on diabetes,
and they raised the sign of the cross
to the idea of doing dipsticks -
that this is unreliable,
not a way of measuring kidney disease,
you may as well not bother.
I think there would be
some differing opinions on that,
but I think that one of the challenges
in general practice
is actually getting a urine test
in the clinic
at the time at which you require it.
NORMAN: Anne, what's your view on that?
I think people find it very difficult
to give you a urine sample on demand.
Paul, what's the evidence here?
There's not much point in doing a test
if it's not going to be worth a lot.
If it's not going to change
your management?
Certainly, for diabetes, the guideline
is to quantitate albuminuria,
with albuminuria being the marker
of damage in the glomerulus.
Proteinuria has a few other bits and
pieces that slough off along the way,
so albuminuria is better.
For the general population
that guideline is not there,
but it's useful and easy to do.
In fact, in America and other countries,
as Tim might say,
albuminuria has been integrated into the
cardiovascular risk algorithms as well
as a marker of vascular risk,
probably because the glomerulus
is a blood vessel, it's a filter,
and damage in that
reflects damage elsewhere.
I personally think a quantitative
albumin or something along those lines
gives you at least a number
that allows you to stratify risk.
And we know that if it's significant
and you can regress that,
it actually will allow you to tell your
patient there's a better outcome.
Lesley Salem, what's your practice
in Aboriginal communities?
Even though the focus for me
is identifying kidney disease,
I approach it as
a cardiovascular risk assessment.
So, one, I'm looking at how many
non-modifiable things they have wrong -
you know, age, Aboriginality, family
history, gender, things like that.
And for Aboriginal people, of course,
the age is lower.
And then I'd look
at the modifiable things
that I can deal with
in remote or rural areas -
smoking, dyslipidemia,
hypertension, diabetes.
Abdominal obesity - very important.
Psychological factors that may inhibit
them taking on management or treatment.
Nutrition,
lack of daily vegetables or fruit.
Alcohol intake, physical activity,
microalbuminuria, of course.
And then, if they're in later stages,
I look at anaemia,
any sort of vascular calcification,
looking at ECGs and that,
and any metabolic bone disorder
or any inflammatory problems.
So they're the key things I'm looking at
in assessing.
Either identifying initially
or following through.
I think even though it's kidney disease,
I'm constantly looking at
cardiovascular risk
and what can be modified.
And how easy, in the environment of an
Aboriginal community, is that to do?
I mean, that's a long list of stuff.
A lot of that is point-of-care testing.
ICRs or HbA1cs on point-of-care testing,
I just need a couple of drops of blood
and I can do lipid panels,
haemoglobins and that.
I had to base the practice
on point-of-care testing -
portable ECG equipment
that could be used under a tree
with a laptop, things like that.
One of my clinics is actually
under the trees.
Patients are reluctant to come
in to the clinics because of deaths
and inappropriate smoking ceremonies.
So one of the clinics
is under the trees,
and using some point-of-care
testing equipment.
David, once your eGFR's dropped,
once you've got a creatinine
that's detectably raised,
what, you've lost something like 40%
of your kidney function?
Yeah, or even more.
So once you're outside the normal range,
you've lost half, at least.
We're saying here
we've got to do screening tests.
The screening tests come in,
and the screening tests are crude.
There might be more sophisticated ones
in years to come, but they're crude.
If they come up positive, almost half
your kidney function's already gone.
What's the impact of intervening then?
Your blood pressure is up a little,
and you get in hard with blood pressure
and lose a bit of weight.
Can you return your creatinine
to normal?
You may not return it to normal,
but at any stage of kidney impairment,
you can have an effect
on the rate of progression of disease
with treatment, and you can reduce
the cardiovascular risk.
Lesley is working
in an Aboriginal community.
We're all working with people
with busy lives.
They don't know they've got
kidney disease,
and you want me to take major treatment.
Can you promise me an effect?
Beres, what do you tell your patients -
we're putting you on these drugs
and you've got to stay on them for life.
What's the promise
in terms of my kidneys?
What does the evidence say?
I suppose my first priority, again,
is reducing cardiovascular risk,
because I think that's going
to kill these people
before their kidneys, in many cases.
If you've got kidney disease, do
you take the same approach as diabetes -
you go onto a statin regardless, you
go onto an antihypertensive regardless.
It doesn't matter what your levels are -
we're going to hit you hard
for your risk factors.
That's probably summing up
fairly tightly.
Certainly, one has to work with
the individual patient
and look at the whole picture,
address the lifestyle risk factors
as well as pharmacological approaches.
And in some cases it really takes
a bit of stepping through,
prioritising medications
and working with patients to help them
understand the targets of therapy.
Paul, what's the evidence?
There's a number epidemiological
cohort studies
that have shown the tight correlation
between reductions in kidney function
or eGFR
and increased cardiovascular risk.
NORMAN: No, but intervening.
Intervention studies both in diabetic
and non-diabetic studies.
Usually the one that we've looked at
are looking at reductions
in progression of in-stage disease.
It can show a halving
of the rate of progression
with tight blood pressure control.
Predominantly it's the blood pressure
control people that have looked at.
As with anything, people with greatest
risk derive the greatest benefits.
So, those with the worst degree
of blood pressure or proteinuria,
if you can get that under control,
derive the greatest benefit.
There's strong evidence that you can
slow rates of progression of disease.
It probably ties into
cardiovascular events as well,
though most of the trials
aren't powered to show that.
I've got a question here which is
asking about low-protein diets.
If you're starting to register high,
you're coming up positive
on your kidney screen,
straight onto a low-protein diet?
No. In Australia, the consensus is
that low-protein diets have no part to
play in stopping progression of disease.
There are pockets of belief overseas
where that is practised.
We certainly practise
avoiding excessive protein intake,
but going to a low-protein diet,
the answer is no.
Can I just take us back briefly
to the urine testing?
I would like to get across the point
that conventional dipstick testing
for urine protein is still OK,
and it's still the area
where the best evidence exists
in terms of the importance of that
in long-term outcome studies.
It's cheap and it's reasonably accurate.
I don't want people to feel
they shouldn't do it.
But there's no question,
as Paul was indicating,
that we're moving progressively towards
albumin as a more accurate measure
and as one which can be done
in the laboratory more easily.
So stand by to watch
for the next 6 to 12 months.
New recommendations may well be
coming out in that direction.
Another online question -
'How does one investigate someone
suspected of having
chronic kidney disease?' David?
Well, do the initial screening test
to prove it.
So, doing their eGFR and then looking
at their urine, as we've just said.
And then the investigations that you do
depend on the stage of kidney disease.
So if it's very early,
you may not do too much more than that.
NORMAN: As defined by?
By the level of GFR.
So once your GFR falls below 60,
so you're into stage-3
chronic kidney disease,
that's when you start to look at
other things, such as haemoglobin,
to see if the patient is anaemic,
start to look at calcium and phosphate
to see if there's any imbalances there.
David, you'd also agree
that at any stage of GFR reduction,
if there is proteinuria
or albuminuria present,
that adds greatly to the risk
of progression?
Yes, you're quite right.
So the GFR and the proteinuria
are independent risk factors.
The new staging is going to take account
of proteinuria at every stage.
And what's the place - our
online viewer asks - of renal biopsy?
- When do you start doing that, Paul?
- Oh, it depends...
This goes to when the GP
would actually refer on.
It probably depends
what school you went to.
People are changing. We do a lot less
biopsies now than we used to.
Most people would biopsy if
there's definite nephrotic syndrome...
NORMAN: You've got oedema, proteinuria.
Proteinuria of greater than 3g a day,
low albumin, swelling, all the rest.
Those diseases may benefit
from specific treatment.
If you've got significant proteinuria,
which we define as over a gram a day,
and ACR roughly of about 100,
protein-creatinine ratio of about 100,
people may biopsy there, looking to see
if they can treat with other agents
than our standard therapy, which is
aggressive blood pressure lowering.
There's a debate about that,
and we can discuss that,
but that's really for nephrologists.
For the majority of patients,
we wouldn't think of biopsy
without rapidly
progressive loss of kidney function
with haematuria
or significant proteinuria.
Let's go to our first case study.
Lily is a non-Indigenous 40-year-old
woman on her first visit to you, Beres.
She has three children,
and tells you in her first pregnancy
she had swollen ankles
and high blood pressure.
You measure her blood pressure
and it's 160/90.
She says, 'That's what other doctors
got for me recently.'
She says she doesn't smoke
and has one or two drinks
at the weekend.
This lady has come for a check-up,
and I'd actually clarify
what her expectations are.
In the general practice setting,
a check-up means a bit more
than just checking blood pressure
and honing immediately in
onto that issue.
We'd certainly discuss other preventive
health aspects, lifestyle aspects,
looking at risk factors
for cardiovascular disease
and screening for cancers in particular,
pap-smear screening.
For this context, I suppose
the hypertension is significant.
Certainly that history
of pregnancy-related hypertension
will contribute
to her risk of kidney disease.
She should actually also be screened
at this point in time
for kidney disease,
particularly looking at her eGFR
and at her urine test.
I'd also probably want to check
a little bit further
regarding her blood pressure,
and make sure it's not due to
some other cause.
I'd do routine electrolytes,
I'd do a full blood count on her
at that point in time as well.
I'd then start certainly to address
her cardiovascular risk factors also.
I'd probably do her cholesterol
at this point in time and fasting sugar.
What if she had blood in her urine, Tim?
You would need to establish
if it's persistent,
and there's an algorithm
which we can distribute
but I think we're not planning
to talk about tonight,
which would demand investigation.
Persistent dipstick-positive haematuria
is abnormal
and should always be investigated.
NORMAN: Would you send off
for microscopy on the first occasion?
Yes, you'd certainly send it
for culture.
NORMAN: Are we still old-fashioned
enough to look for casts in urine?
No, casts don't get mentioned much
anymore.
But the presence of what we call
glomerular haematuria
or dysmorphic cells
has replaced that.
We have got a reliable service
that does that well.
That's a very useful help in determining
whether the haematuria is coming from
the kidneys or from the urinary tract.
Lesley Salem, if this was an Aboriginal
woman, part of your community,
you'd be thinking about blood sugar?
Yes. I'd be looking at loss or risk
or urinary tract infections
if she had haematuria.
Sorry, the line was going a bit blank
there. I missed some of it.
I'd be looking at further sampling
to confirm
that it was consistent haematuria
and looking at her diabetes
and those sort of risk factors.
Anne, what should be challenges here
of this woman, moving forward?
Let's assume that she's really just
beginning to show a reduced eGFR
and maybe just a little bit of protein
in the urine.
What's the whole picture that GPs
and others have got to look at?
I think you need to look at
her social situation.
I think a multidisciplinary team
is really important.
If you have a dietician who can
speak with this lady, you've got...
I don't think she smoked.
NORMAN: No, she's not a smoker.
- No.
Looking at her bloods and urine tests
over time,
you can demonstrate to her
her progression or improvement
of her results
depending on her treatment, and whether
she's adhering to the treatment.
So, Beres, she comes back to see you.
The only tests that have come up trumps
are... The eGFR is down a little bit.
A little bit of protein in the urine,
not a lot.
What are you going to do now for her?
Well, certainly,
I'd want to control her blood pressure.
She's actually a relatively young woman,
and I would probably have a brief chat
to a renal physician about her.
I suspect that the proteinuria
is related to hypertension.
Certainly,
in controlling her hypertension,
I'd use an ACE inhibitor or an ARB.
I'd usually use an ACE inhibitor first.
But I'd probably just have a brief
discussion with a nephrologist.
NORMAN: Well, you've got three here.
Take your pick.
I suppose the question is,
is there anything more I need
to do for her at this point in time?
OK, lads, fight over this patient here.
She needs an ultrasound and
her proteinuria/albuminuria quantitated,
and she needs to be watched over time
to see what the trends are.
NORMAN: An ultrasound to see
if she's got an obstructive uropathy?
Yes, to be sure
you won't have a red face in two years.
Otherwise, time will sort this out.
If, in three months,
her blood pressure is under control,
her albuminuria has gone away
and her GFR is stable,
then you know you're on top of things,
and you can just continue to manage
without referral.
Let's change the story a little bit.
She's 38.
She wants to have a fourth child.
What are we going to tell her now,
David?
Well, it depends
on the level of her eGFR.
If her blood pressure is under control
and her eGFR is above 50,
then probably she's going to be OK
with the pregnancy.
It probably won't have much extra risk
for her kidney.
But once her eGFR gets lower than that,
there's a risk that her renal function
will get worse during her pregnancy.
Is there a risk of eclampsia?
Yeah, there is an increased risk
of hypertension getting worse
during the pregnancy.
What's the eclampsia story here,
pre-eclampsia story, Paul?
She's had it in the first pregnancy,
with hypertension and swelling.
Her second pregnancies, I think,
were OK.
Generally, if you get through
the second and third
without pre-eclampsia, it's less likely.
She may well have sustained hypertension
during the pregnancy
and transient hypertension
towards the end.
It'd be unlikely she'd develop
pre-eclampsia based on previous history.
Only thing to point out -
she can't be on an ACE
if she's wanting to get pregnant
'cause it's foetotoxic.
She needs to be off that agent
in the first trimester.
But there would be no problem
with her being pregnant.
She'd be at slightly increased risk.
You'd just watch her.
To what extent
do we look for other causes
of her hypertension
and her kidney disease? Tim?
If the hypertension is controlled
and her kidney function is stable,
then one... I would not go beyond
an ultrasound.
So we'd just say it's idiopathic kidney
damage, we don't know why she's got it?
Well, you may well be missing
some mild nephritis,
but it's not going to be treatable,
so you would just treat expectantly.
So you don't go hunting hard
for autoimmune kidney disease?
If you think there's
an underlying nephritis,
at some stage, if you then
go to referral to a nephrologist,
then most of us would do a screening
for nephritis with ANFs,
immunoglobulins, et cetera,
but the yield on those is quite low.
It would very much depend on the degree
of her albinuria and proteinuria.
If there's lots, it wouldn't fit
with simple hypertension.
If it was very mild,
you probably wouldn't chase it,
or if she had haematuria and proteinuria
suggesting it.
Anne, as a nurse practitioner,
sit back from this,
take a whole view of the system,
when is it appropriate
if a GP does have
a specialist nurse practitioner
in the town,
when does the nurse practitioner
see a patient?
When should a patient be referred
to a specialist?
What's the story there? Give us
a systemwide view from where you sit.
I get some direct referrals from GPs
for people who have very mild
kidney impairment, stage 2s,
people that they're very worried about
their diabetes, for example,
or people who are becoming anaemic,
and I will help them manage...
NORMAN:
So, control slipping away from the GP?
I think they just want...
they don't think it's serious enough
to contact a nephrologist because they
know nephrology services are very busy.
I'm like an extra link
that they can access.
If I'm worried, I'll just flick them
straight into the nephrologist's clinic.
When do you refer on, Beres?
A number of people in stage 3,
people with glomerular haematuria,
I'd certainly want a discussion
regarding them,
and certainly anybody beyond stage 3
or people who have got complications.
A question here
from one of our online viewers,
Michael Nixon
from the Northern Territory.
'95% of my patients are Aboriginal
and Torres Strait Islanders.
Issues around diabetes, hyperlipidaemia
and hypertension,
together with helping people understand
the implications
of compliance to the medication regime
are always uppermost in my mind
and in my interactions with patients.'
In other words, taking the holistic...
It's more of a comment than a question.
Do you have a comment, Lesley?
Would you concur with those views?
Absolutely. That's where the nurse
practitioner role has come into play,
in that we can give
longer consultations,
we can go to different areas
where it may not be feasible for a GP
because GPs are private practice
and they need numbers and that
to sustain their own business.
We can be employed under different
methods and go into different areas.
We can case-manage a little bit
more frequently
and follow people up
in their own communities.
That's one of the benefits
we're able to provide,
like Anne and I,
and why we get referrals from GPs
who may have lost a patient
who hasn't followed up with them.
We can actually seek people out
in their community.
And I get referrals also from the
maternity services on Aboriginal clients
who really don't have a location
or a GP.
I can follow them up
and track them into more...
And work with the GP
and a collaborative team arrangement.
That's a take on how we'll do it.
NORMAN: Let's go to our next case study.
Vivian is a 46-year-old
non-Indigenous woman.
A BMI of 25.5,
so she's not really overweight.
She's had type 2 diabetes and been
on insulin for the last four years.
She's high blood pressure,
she's got high cholesterol.
A biopsy has detected
diabetic nephropathy.
Vivian is a single mother
with a 17-year-old daughter.
She works full-time as a casual.
She's a social smoker,
about a pack a week,
and a rare social drinker.
She can't afford all her medications
and wonders what meds she can miss.
She's stressed,
and had a few hypos while exercising.
Her current medications are -
Her HbA1c is 8 at the moment.
Her blood pressure is 130/80.
Her albumin-creatinine ratio is 360.
Her urea 8, her creatinine is 80,
and her eGFR is 71.
Certainly...
We have comparable... we have results
there from previous times as well,
and we can certainly see
that there's been
some improvement in her HbA1c,
which reflects control of her diabetes.
There's certainly been some improvement
in her blood pressure
and some improvement in her ACR
and improvement in her eGFR.
Although we note on those results
that her HbA1c is not yet to target,
and her blood pressure
is also not yet to target.
So there certainly
is some more work to be done,
but it's good to see that improvement.
NORMAN: Which of her drugs can she ditch
because she can't afford them?
Ah. I actually wouldn't immediately
have thought about ditching any.
I would probably have to work with her
fairly hard, though,
to work through these issues
of enabling her to...
..you know, to convince her that
we think that these are all necessary.
NORMAN: But she's not got
type 2 diabetes.
She's 46, she's not fat and
she's been on insulin for four years.
This is a woman with type 1.5, isn't it?
TIM: That's not unreasonable.
She's a very interesting case,
in that she's continuing to have
heavy albuminuria
despite having a combination
of ACE and ARB.
Yet her creatinine has improved
over some period of time.
So there are some good things happening
and some not-so-good things happening.
I think all the drugs are essential,
as Beres said.
But she continues to smoke, Norman,
and I think that's a major issue.
She should save her money
by giving up the cigarettes?
Absolutely.
Nice of you to say it, Doctor. I'm sure
that's extremely effective advice.
Anne, how would you be approaching this?
It's obviously not an easy situation
for a woman
living in difficult circumstances.
She does need to cut down smoking
as much as possible.
It's an independent risk factor
for chronic kidney disease
and cardiovascular disease.
That will save her a lot of money
because they're very expensive.
And possibly change her
to the combination polypills
appearing on the market now.
This is the sort of lady
you can have a really good win with.
We should be able to keep this lady far,
far from dialysis all of her life.
Given that she's not got type 2 and
she's got insulin-dependent diabetes,
what's the impact of better
diabetes control on her kidney function?
Not as much as
better blood pressure control would be,
we nephrologists would say.
We'd focus probably on blood pressure
reduction. Recent articles suggest...
Just pretend you're a real doctor and
you look after more than the kidneys.
Even for her other
vascular risk factors,
even the UKPDS showed that
the blood pressure reduction
was the greater... driver
of improved cardiovascular outcomes,
apart from renal analysis.
We'd focus on blood pressure,
try and get that down.
You can rationalise the medications.
We do aim to target an HbA1c of 7%,
but I don't think the risk reduction is
as great as with blood pressure control.
I can't quote you a percentage -
I just don't know -
but it's not as great as
across the board for all vascular risk.
Just coming back to the smoking,
Norman,
the evidence is that if you smoke
in the presence of kidney disease,
you'll go onto dialysis twice as early -
that is, you're half the time
to dialysis as though you don't smoke.
That's a very useful figure to use
with patients.
Given that she's probably got type 1,
what will you do
about the 17-year-old daughter?
I think she still does have type 2.
NORMAN: Do you?
We're seeing type 2 diabetics
at an earlier age.
But they're fat. She's not fat.
- You don't have to be fat.
TIM: She's lost weight.
NORMAN: Oh, has she? OK.
That was a quick save there, Dr Mathew.
You brought up the question
of her family history,
and that's very important.
She's got kidney disease, so her family
is at risk of kidney disease as well.
NORMAN: So, regardless of cause?
Yes, regardless of cause,
but particularly with diabetes.
And if this was an Aboriginal woman,
Lesley?
As much as you can, looking at
drugs that are on a PBS system,
or looking at where you could hook
in to the Aboriginal S100 schemes
so it becomes affordable for them
to stay on medication,
using Aboriginal health education
officers and health workers
to case-manage and follow and help.
A really good education,
ensuring the person understands
the issues involved
in their particular case.
Often, health literacy,
it is so poor in so many people,
Aboriginal and non-Aboriginal.
Let's go to our next case study.
Sandra is a 56-year-old
Aboriginal woman.
She's a bit overweight,
with a BMI of 27.4.
She's got type 2 diabetes
and is on insulin.
She's got also high blood pressure
and high cholesterol levels.
She's an ex-smoker and an ex-drinker.
She's got lots of work to do
with her family, and works part-time.
She's confused about whether
she's taken her pills or not
and forgets to refill her scripts.
She is on -
Lesley, do you want to comment?
Lifestyle. You'd have to look at
this lady's lifestyle,
changes that could be modified
to start with -
weight, exercise, and, once again,
I lead back into education.
It is culturally appropriate to see if
she's a decision-maker on her health,
whether other people
help to make decisions,
whether she has control over whether
she gets her medications or not.
The social dynamics of the family
are really important here.
But, before you do anything else,
you'd be encouraging exercise,
nutrition and weight loss,
and looking at secondary smoking
within the house
as a key start with this lady,
to tidy up before you even start
on helping her with her medications.
Let's have a look at her pathology,
Beres.
Her HbA1c is 14.6.
Her blood pressure is up a little bit
at 128/85.
Albumin-creatinine ratio is 880.
Urea, 12.1. Creatinine, 197.
eGFR, 23.
PTH, 12.
TIM: I've amended her blood pressure,
Norman, to 170/95.
NORMAN: Sorry? Oh, sorry. I'm looking at
an old measure of her blood pressure.
She is still hypertensive.
And we're not doing a great job about
controlling her blood sugar.
Your patient.
Certainly, not only is her diabetes
and hypertension poorly controlled,
but her renal function
is also not flash.
I agree with the previous comments
regarding lifestyle.
Certainly we've got to get those
reinstated.
It's also time to actually have a chat
about medications.
I think... Well, we know that
she's not been getting scripts filled.
But we've actually got to go back
and work through the reasons for that
and see if we can actually find
some common ground,
so we can move forward with her
to encourage her to get her scripts
filled and actually take her medication.
It's difficult to go adjusting doses
if you don't know
what the patient is already taking.
One really has to ascertain
what's been taken lately
before you even change doses.
How bad is her kidney function, David?
It's bad.
As we can see on her results,
she's down to a quarter of normal.
If she continues in the same way,
she'll need dialysis in the mid-future.
NORMAN: How soon?
Hard to predict, but when she gets to
an eGFR of... certainly less than 15
but as low as 5 - it depends on
the individual patient -
she'll be needing dialysis.
So she's got a while to go,
maybe a couple of years from 23.
TIM: The red lights are flashing here,
aren't they?
Yeah. There's a number of things
of concern here.
It looks as though her kidney function
has actually improved,
but in fact what's happened is she's
not taking her blood pressure tablets,
so it's a false impression.
NORMAN: Explain what's going on.
She's got a higher blood pressure, so
more blood pumping through her kidneys.
- Squeezing through the dying kidney?
- She's not taking her ACE inhibitor.
So the GFR looks better than it should.
One comment I wanted to make
on her treatment -
we're assuming her poor blood pressure
is due to non-compliance.
It may be also her diet.
One thing we haven't discussed in a diet
so far is salt.
If she's having too much salt,
it could make her blood pressure
a lot more difficult to treat.
NORMAN: Anne?
It's really important that people
are seen by a multidisciplinary team
involving the GP, the nephrologist -
if they're at that stage -
nursing staff,
practice nurses in the GP's.
Dieticians are very important because
they can spend the time with people.
They can go through
and do a food diary with them
and make very small changes.
The earlier the dietician
can see a patient,
the smaller the changes
that person has to make.
NORMAN: Are they often
quite salt-sensitive?
A lot of people in rural and remote
communities add a lot of salt,
not only Aboriginal people.
Some of us don't need to live remotely
to do that.
You'll go to a barbecue
in a remote place,
and everybody at the sausage sizzle
tips the salt on
before they taste anything.
It's just the habit there.
A couple of other things about
blood pressure control in these people -
the number of tablets you need
to achieve your target blood pressure
goes up as your GFR declines.
At a level of 20,
you're probably on four or five,
sometimes even six medications,
to reach a target blood pressure.
Generally, everybody who has
some salt and water retention,
requires diuretics, which she's not on,
but she probably does require them.
That would be a general mantra, I guess,
and probably a loop with a low GFR,
although thiazides do work.
You could probably have her
on some combinations
that are long-acting, once a day, that
might make it easier for her to comply,
rather than the twice-a-day metoprolol
and those sorts of drugs.
NORMAN: What combinations,
without giving away brand names?
You could use ACE thiazide
or aCCB combinations.
Actually, out next year, there will be
an ACE thiazide-CCB combination drug.
That will be useful.
We were talking before that
the ideal would be a depo
that you could inject for several months
that would work.
But something that's long-acting,
once a day.
You can mix and match combinations
to make drugs easier.
Lesley, it's all very well for us
pontificating here
about the idealised care
of someone like Sandra.
How do you make it effective by
being culturally sensitive, if you like?
Keeping the person in their community.
So, visiting specialists,
people who visit the areas,
linking them in as much as you can.
Realising that many
won't leave their community
to go and seek specialist help.
So, getting support from as many
of those teams Anne was talking about
to come to a close location
or to those communities to help.
For this lady as well, you're looking at
the complications of kidney disease -
the anaemia and the bone disease.
So, doing as much of the pathology
or testing within the community,
so that person stays with family.
A lot of them have a deep fear
that once they're removed from
that community for treatment or help
that they don't come back.
What we haven't told you, Lesley,
is that her cholesterol is up, 8.5.
Triglycerides, 5.2.
Her LDL is up a little bit too.
She's not anaemic.
One wonders why, but she's not.
She's going to need statins or a fibrate
or something like that as well.
This is a bundle of pills, which is
hard enough for somebody
with full control of their life to get,
much less with the huge demands
of living in an Aboriginal community.
That's a huge issue that we face.
One, they will not travel 100km or 200km
or they don't have transport,
to go and fill a prescription,
and can't afford prescriptions
when they get there.
Linking in with programs
like we're running,
we have health workers
who will pick up the prescriptions
and take them out and monitor whether
that prescription is being taken.
Once again, I use point-of-care
to monitor a blood-sugar level
or to help the patient see the gains
from taking medications.
And education - education in a manner
that is not as wordy
as we see in many of the pamphlets
that come out.
Looking at artwork or figures
or language that suits the community.
And there can be discrepancies
between different communities.
A question, Anne, is how aggressively
do you monitor someone like this,
given the controversy over monitoring -
that you can overmonitor
and get into a pickle
because you're testing too much?
We're on a slippery dip with Sandra,
but how actively do you...
If we're trying to keep this lady
away from dialysis,
she needs to be closely monitored.
I would say she should see the
endocrinology team or the renal team
every month
when they come over to her community.
I think she needs to...
The Indigenous health workers
are invaluable.
If you've got Indigenous health workers
that she trusts
that are spreading the same message
that the teams are spreading,
then you get continuity of that message
when you're not there.
What are the different models of care
that are available
for Indigenous communities?
You need to find out what people want.
In the past,
it's been very paternalistic.
Clinics have been built
and patients don't go to them
because it's not
what they would have chosen
or it's not where they feel safe.
So you have to have
community engagement.
I think you need to bring... The care
does need to come to the communities
because people can't afford to travel.
In a lot of cases, in north Queensland,
they have to fly.
It could be 1,000km, 2,000km
to get to the nearest nephrologist
or vascular surgeon.
And that's a big ask for people.
A GP in Queensland asks,
'What's the current state of knowledge
between haemodialysis
and peritoneal dialysis?'
What's the benefits, what are
the downsides and the upsides?
Let's take it living in a city
versus living in an Aboriginal community
or living in a rural town
without a lot of support. David?
The choice between the two is very much
up to what suits the patient.
If there's a medical contraindication to
one or the other, that will guide you.
But usually that's not the issue.
It's usually a patient choice.
If the patient is well dialysed
with either peritoneal or haemodialysis,
they can do equally well.
You run Statewide dialysis services,
Paul, in New South Wales.
What's your view on this?
The bean counters want you
to do PD all the time, do they?
It's no more cost-effective
than home haemodialysis in our State.
So there's no cost benefit to PD.
So, we have it as a patient choice.
Either modality has its problems.
With PD,
it's peritonitis and infections.
The average time on PD in Australia
is two to three years
is how long the modality works
before people shift off to haemo,
on the whole.
Haemodialysis, if they can do it -
it's a greater technical burden
for patients and their families to learn
and manage - but if they can do it,
it has a good outcome.
The major problems are related to
maintenance of vascular access.
Both put a burden
on the person and their carer.
And, in remote communities,
if you're doing home haemo there,
it puts a burden
on the local health staff
to look after these patients.
In some places where it wasn't
in the territory when we set it up,
there were concerns about being
held responsible for health workers
if things went wrong.
So there was a degree of
reluctance or fear
about having home-
or community-based dialysis.
The benefits to the patients
and the community were great,
but there were concerns that needed
to be weighed up in those settings.
The pathway by which people finish up
on peritoneal or haemodialysis
is poorly understood in this country.
Kidney Health Australia is doing
a national consumer or patient survey
on everyone on dialysis,
be it at hospital or home,
trying to better understand
that pathway.
We're encouraging all patients
who will get a form to fill it in
and let us know what their pathway
has been,
what their feelings are,
what their successes,
and to help us guide this very important
question of which is the preferred way.
An online viewer asks,
'What are the hallmarks
of a good satellite dialysis?
How do you make it work remotely?'
Lesley, do you want to comment on that?
Do you have much experience of that?
We can't ignore the patients
who are in satellite units.
Previous to this position,
I looked after 360 patients
in satellite and home dialysis.
Once again, it was a focus on
cardiovascular risk for these patients.
So constantly looking at
the issues around dry weight
and their medications,
timing of medications.
So even though
they were in satellite units,
with nurse practitioner support,
working with the GPs in the community,
you can create very stable,
well patients.
So very much a health-promotion view
of looking at patients
in the satellite units is important.
David Appleton
from Mallacoota Medical Centre asks,
'What's the role of combination
ACE/ARBs and at what doses?
In proteinuric kidney disease,
there's a role for both of them.
The combination appears to be better
than one by itself.
That's a little bit controversial.
In fact, if you push the dose up of an
ACE inhibitor or a receptor antagonist,
you can probably get as good an effect
as you will from
combining the two together.
The main drawback, of course,
to the combination
in patients with renal impairment
is whether they become hyperkalemic
or not. You need to watch for that.
An important trial came out earlier
looking at the hypertensive vascular
risk patient, the ONTARGET trial,
which showed ACE/ARB combinations
had no benefit
in reducing cardiovascular events
and had a greater degree
of adverse effects,
with decreased GFR and hyperkalemia.
So, it's only in a small group -
significant proteinuria, renal disease -
that you might consider them.
The other thing is, I guess - we should
fess up that the trial that suggested
that the combination halved the rate of
progression was shown to be fraudulent.
NORMAN: (Laughs) Right.
Dr Appleton, you might just want to be
a little careful
about how you're throwing around
this combination.
You might want a nephrologist with you
just in case something goes wrong.
I wouldn't use the combination
routinely.
The most important thing is the achieved
blood pressure, not the drug you use.
An ACE/ARB won't give you the degree
of blood pressure lowering you'll get
with an ACE thiazide
or an aCCB generally.
I'd go for those combinations
these days.
Beres, what about the challenges
of the elderly?
That could be defined
in any way you like.
Since we're all approaching
the elderly age group,
let's be loose about the age where
we define someone as elderly.
Kidney disease in the elderly -
what's the story from your point of view
as a GP?
Certainly, there is an increased
rate of kidney disease in the elderly.
There are two different perspectives
on this.
One is that, really,
we shouldn't be ageist.
We must continue to look for
the condition and manage it.
The other side of it
is really to have a look at the person
and look at all of their comorbidities,
and have the discussion with them.
I suppose I frame that, really thinking
about at what stage of CKD they're at.
NORMAN: Tim?
The only really contentious issue
is whether you consider dialysis
for someone, say, in their mid-80s
and beyond, which I would call elderly.
Apart from that, all the treatment plans
to do with hypertension and cholesterol
reduction and things should apply.
Certainly, the evidence is now in
that treating hypertension
in the elderly is effective.
And I don't see any reason
for not offering elderly people
EPO and phosphate reduction
and all the things for complications.
Whether you offer them dialysis
is a very difficult issue.
It has to be considered individually.
Australia offers about a quarter of
the rate of dialysis to that age group
as other OECD countries,
so we're probably underdelivering
by international standards.
But you talk to a lot
of Australian nephrologists,
and they would say maybe
we've got the balance right here.
There is some recent evidence showing
that if you don't offer dialysis
to that population
that they tend to do about as well
as those that do get dialysis.
And is age a strong enough risk factor
to be a trigger for screening
in its own right?
We teach that over the age of 50
is the cut point above which the risk
of having kidney disease, or yield,
is sufficient to justify the screening,
so the answer is yes.
Paul?
I'll stick with Tim on that.
(Laughter)
NORMAN: Oh, you chicken.
It might cut out at 70 or 80 or 75.
There is an upper age, above which...
Why would you cut it out?
You've told me you'd have
the same criteria as everybody else.
You might get people
an extra four or five years
if you treat kidney disease
aggressively.
For the same reason
that the absolute-risk tool
is not applied above the age of 75 -
everyone is so high-risk for everything
that justifies treatment.
Anne, do you have any comment on looking
after the elderly with kidney disease?
I think it's our growth industry,
really.
This is your future we're talking about.
Most of the patients I see
would be over 65.
There's very few that would be under 50.
Lesley, you should be so lucky
that you see somebody who's elderly
in an Aboriginal community.
Exactly. Two issues here -
elderly in Aboriginals is a lot younger.
The median-age deaths from CKD is 60
in Aboriginal people
as opposed to 82 in non-Aboriginals.
So age is relative, I guess,
and a lot younger for Aboriginal people.
The important issue here is
if you identify CKD
you can link into palliation programs.
I'm not talking about end-of-life
palliation, but symptom control.
There's new clinics coming on board
for control of itch and control of pain
and things associated with CKD.
So I think it's important to identify
at any age,
whether you're going to
actively dialyse them
or link into appropriate palliation
services to make the person comfortable.
NORMAN: Pain, Anne?
ANNE: Mm.
What pain do they get?
A lot of people have quite severe
arthritis, and we're telling them
they can't take any of
the non-steroidal anti-inflammatories.
Panadol Osteo and glucosamine
don't always do it,
and so there's a lot of pain.
They get metabolic bone disorders.
If they've got high PTHs, they've got
headache, bone pain, muscle aches,
which goes along with
all the complications of CKD.
Interesting, and disturbing.
What Medicare items help in all this,
Beres?
It's really good that we...
NORMAN:
A question from an online viewer.
There certainly are
Medicare item numbers.
I'm not going to list them specifically.
There are two separate structures -
one is the GP management plan.
There's a rebate for actually working
with the person
to clarify what the problems are,
determine the goals of care,
and then to determine who does what -
you know,
what the patient's responsibilities are
and what the GP links them into.
There's also an item for reviewing
the GP management plan.
There are also items
for team-care arrangements,
where one actually coordinates care
with other health practitioners.
Most of the divisions
have actually put a lot of work
into supporting and teaching GPs
how to use these item numbers,
and are aware that more and more
practice nurses
are actually having a major role
in building these management plans
into general practice
and helping keep the plans on-track.
What about nursing item numbers?
I think there's six for allied health.
There is no Medicare provider numbers
for nurse practitioners currently,
but that's before the Senate.
TIM: There are for practice nurses.
- But not nurse practitioners.
In the practice of nephrology, the APNA
have got teaching modules now online
that the government have arranged
for all the chronic diseases.
We strongly encourage GPs
to use those item numbers
to make a business case in favour of
employing practice nurses.
Employing a practice nurse
to help with screening.
I think there's ten visits for follow-up
with a practice nurse,
so that if you put something in place
like a medication,
it can be followed up,
and blood pressure is checked,
urine is checked, things like that.
There is a lot more access to numbers
for follow-up
after you've identified somebody.
And now,
just before we finish our program,
we'll get you the results
of the last question on the poll -
And you all do in your practice.
Well done.
Lesley, what's your takeaway message
for viewers?
It's that I think initial screening
and identifying problems in communities,
and the extent of that,
and then pulling teams in to help.
so, getting people to visit the
community or an area close to that
and linking in with Aboriginal
health workers and local services
and particularly lifestyle services,
such as smoking cessation
or exercise programs.
The team moves beyond a clinical team
to an education and a lifestyle team.
That's very important,
as much as the pharmaceutical treatment.
Lesley, thanks for staying on the line
for the entire program.
It's been really good of you.
Anne?
My take-home message would be -
we have to get screening out there
for people who are at increased risk,
because it is silent.
There are no symptoms until up to 90%
of your renal function is gone.
Your kidneys are deteriorating at the
same rate as your cardiovascular system
and your eyes and whatever.
If we can screen people earlier,
the interventions are so much smaller
to make such a big difference.
NORMAN: Beres?
I'm somewhat reductionist
in my thinking.
I think that we really need to recognise
that this is a very important
cardiovascular risk factor,
and it's worth looking for.
NORMAN: Paul?
That declining GFR and
increasing proteinuria or albuminuria
independently and progressively predict
vascular events
and risk of renal disease.
Hopefully we'll give you one way of
thinking about albuminuria/proteinuria
in the next year or two
so that people know better
how to assess and use it
as a clinical tool.
NORMAN: Tim?
The number of patients on dialysis
in this country
has doubled in the last nine years
and is destined to double again
in the next ten years.
The only way that Kidney Health
Australia thinks that's going to change
is by finding kidney disease earlier and
doing something appropriate about it.
It is silent, and
therefore we must go looking for it.
NORMAN: David?
That it's definitely harmful, but it's
also preventable and treatable.
Thank you all very much indeed.
An illuminating program.
I hope you found it too.
Chronic Kidney Disease:
A Silent Condition.
If you're interested in obtaining more
information about the issues raised,
there are a number of resources
available
on the Rural Health Education Foundation
website -
Don't forget to complete
and send in your evaluation forms
and register for CPD points
by completing the attendance sheet.
I'm Norman Swan.
From all of us, goodnight.
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Department of Families, Housing,
Community Services
and Indigenous Affairs�

https://www.youtube.com/watch?v=QG07O-u_4KE