PKD Life - Winter/Spring 2024 - 18

COE REQUIREMENTS
To hammer out the details of what would
qualify an institution as a COE, the PKD
Foundation held an inception conference
in March 2022, which brought
together nephrologists who specialize in
treating ADPKD.
" A big driver for creating this program
was to establish a standard of care, to
really define what we mean by excellence, "
says Neera Dahl, M.D., Ph.D.,
director of the COE at the Mayo Clinic in
Rochester, Minnesota. " We asked PKD
specialists what excellent care looks like
at their clinic, what the challenges are,
and what resources they need. "
The criteria for being designated a
PKD COE stipulate that these centers
must offer:
More than one nephrologist
experienced with ADPKD.
A COE must have at least two
ADPKD specialists on the team. The
program should also have a mentorship
network that pairs experienced nephrologists
with newer, younger nephrologists
who are interested in PKD and
eager to learn how best to manage their
patients. " We don't want to just identify
the top clinicians, " Hoover says. " We
want to make sure we're pulling in the
next generation of specialists, training
them, and giving them resources. "
Specialists in health issues
that are relevant to PKD
patients. " PKD is a systemic
disease, and taking care of our patients
with PKD means taking care of them
holistically, " says Fouad T. Chebib, M.D.,
director of the COE at the Mayo Clinic in
Jacksonville, Florida. " There are problems
that exist outside the kidney that
require very nuanced expertise, such as
nephrectomy, partial hepatectomy, cyst
reduction therapies, pain management,
18
PKD LIFE * WINTER/SPRING 2024
and intracranial aneurysms. A successful
PKD center also has engaged with
radiologists with expertise in this field
to facilitate advancing imaging markers
that could predict risk of disease
progression. "
A patient navigator. This person
oversees and coordinates all
aspects of a patient's care. They
help with planning appointments, specialist
referrals, insurance matters, information
about kidney transplantation
and dialysis, and identifying patients
who may be eligible for clinical trials.
A clinical research component.
" The Foundation is dedicated
to ensuring that patients
have access to information about how to
participate in research, " Hoover says. " So
even if a patient chooses not to participate,
we want them to know the current
studies, what they might be eligible for,
and what participation looks like. "
Hoover says all COEs host clinical studies
at their sites or refer patients to them.
ADDING A PEDIATRIC FOCUS
In 2023, the COE program also invited
pediatric PKD specialists to apply. " One
of the issues we heard is that as children
with ADPKD get closer to adulthood,
there are challenges when transitioning
care from a pediatric to an adult
nephrologist, " Hoover says. The Foundation
wants to make sure it's creating
partnerships with pediatric nephrologists
and the COEs so they can easily
transition pediatric patients and give
them the tools they need to take over
responsibility for their own care as they
become adults, she says.
Engaging and connecting patients
is another goal of the program as it
expands. As the network of COE and
Partner Clinics has grown, there's
been more involvement in the Walk
for PKD, more community events, and
more awareness.
GOING FORWARD
With COE criteria now in place, program
organizers are working to expand the
network so that, ideally, patients can
plug in their ZIP code on the Foundation's
COE page and find a Center or Partner
Clinic they can get to easily. In just
one year, the program has grown by 57%.
" Unfortunately, there's a PKD care desert, "
Dr. Chebib says. " There are big areas
in the U.S. where there's no identified
PKD expert or any specific nephrology
clinic that's interested in understanding
the disease and being a champion and
advocate for PKD patients. "
The Foundation is reaching out to
large nephrology practices to find out
whether they have experience treating
people with ADPKD. " It's really just
about growing the number of specialists
in the country and giving them tools to
increase their expertise, " Hoover says.
" We also welcome patients who see a
nephrologist who they believe is a specialist
to please encourage that nephrologist
to apply. "
Dr. Chebib says patients often tell
him that they haven't met other people
with PKD in person, despite belonging
to groups on social media. " Now that
there's this structure of Centers of Excellence-which
includes patient panels,
events, and various requirements for
providers to stay as engaged with their
patients as possible-people with PKD
don't feel that they're on this journey
alone, " he says.
Adds Dr. Chebib: " At the end of the
day, that's what we're trying to achieve-
to say we'll take care of you. We know
what's going on with PKD, and we'll give
you the best care possible at the moment
and keep pushing for better care. "
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PKD Life - Winter/Spring 2024

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