PKD Life - Fall 2022 - 11

The Importance of
Family Screening
Insights and advice from nephrologist Songul Onder, M.D.
Q How should providers
S ongul Onder, M.D., is a nephrologist at Le Bonheur
Children's Hospital in Memphis and an associate
professor at the University of Tennessee Health Science
Center. We asked Dr. Onder about key issues in the
world of polycystic kidney disease (PKD) and the
importance of family screening.
with their treatments, and it
may make it easier for us to
reach the other family members,
both for education and
screening purposes.
Q Why is it so important
that family members
Q You have said that
people with PKD often
don't understand the disease
or its genetic component.
Can you elaborate?
I think it's due to the lack of
education that we provide
to our patients both at an
individual level and on a
community level. This is an
autosomal dominant condition
with 1 in 2 offspring at
risk of having the disease.
Therefore, prevalence of
ADPKD continues to rise.
Every patient that we diagnose
with ADPKD can potentially
be an ambassador of
the disease and educate his
or her close family members
and the community. Only
in this pyramidal method of
education can we succeed
at diagnosing our patients
at younger and more intervenable
ages so they can
have better outcomes. We
need more reinforcement to
educate families about the
disease. We are behind on
education, which is important.
I've seen patients on
dialysis who have PKD and
are not even aware that
PKD is the cause of their
kidney failure. A gap in the
conversations between clinicians
and patients leads
to a lack of awareness or
knowledge of the hereditary
component of the disease.
Q Why are we behind
on education?
In my opinion, our patients
fall behind on their education
of their medical condition
mostly because we as
their doctors are not able to
spare the time to educate
and enlighten them. One
easy solution may be to have
nurse coordinators function
as the middle person
responsible for educating
patients. This may help
make a difference in terms
of how well patients comply
get screened?
If we ensure an early
diagnosis and start them
on the appropriate diet,
lifestyle modifications,
and medications, we can
delay the progression of the
disease. They can also get
genetic counseling for family
Q How do you communicate
the need for family
testing to your patients?
I tell my patients that there
is a 50% chance they will
pass the disease to their children
and that early screening
and diagnosis can help
slow the progression. I tell
them to share their diagnosis
with family members and
encourage family members
to discuss the information
with their healthcare
providers in order to take
the right steps toward the
diagnosis. I give them my
card and encourage them
to communicate with me
and tell them they can send
their family members to our
hereditary kidney disease
clinic for screening.
communicate with
their patients about the
need for family screening?
I would say to be more sensitive
when using the word
" hereditary. " It may make
patients feel guilty-as if
they are giving the disease to
their family members. I tell
them that PKD is the fourth
most common cause of kidney
failure and one of the
most common genetic diseases
in the world, and that
it's necessary to check family
members for early diagnosis
and further education to
minimize bad outcomes. By
doing that, it's possible to
take away the feeling of personal
responsibility and the
guilt of passing the disease
to family members.
Q What about genetic
I don't push for genetic
testing, as PKD is usually
diagnosed using imaging
(such as MRIs or ultrasound).
It's not something
we routinely recommend. I
just recommend an imaging
study of the kidneys along
with a urine test, blood
tests, and, most importantly,
a blood pressure check.
However, genetic testing
may be necessary for some
patients with atypical

PKD Life - Fall 2022

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