In this week's replay episode from 3 years ago, we delve into the world of pediatric heart transplantation and the impact that race or insurance status may have on outcomes. What are the factors that explain worse outcomes for black children waiting for a heart transplant? How is the PHTS Racial Disparity Taskforce working to reduce inequities in this field? What role does insurance status have on these outcomes? We speak with noted heart failure and transplantation expert, Dr. Neha Bansal who is Associate Professor of Pediatrics at The Icahn School of Medicine at Mount Sinai about this recent PHTS multicenter study.
- DOI: 10.1016/j.healun.2022.12.002
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hello everybody, This is Rob Pass, the host of the
Pdhart podcast. This week we venture back three years to
review an interesting paper on the effects of race and
insurance status on wait list outcomes in pediatric heart transplantation,
and we speak with doctor Nehabonsel, who's presently Associate Professor
of Pediatrics at my own institution, the Icon School of
Medicine at Mount Sinai. I hope everybody enjoys this important episode.
(00:23):
I'll see you back next week with a brand new episode.
Welcome to Pedihart Pediatric Cardiology Today. My name is doctor
(00:46):
Robert Pass, and I'm the host of this podcast. I
am Professor of Pediatrics at the Icon School of Medicine
at Mount Sinai, where I'm also the Chief of Pediatric Cardiology.
Thank you very much for joining me for this two
hundred and fifty eighth episode of the podcast. I hope
everybody enjoyed last week's extra special Friday, in which we
released two episodes. One was on the upcoming World Congress
(01:07):
of Pediatric Cardiology and Surgery and the other was on
the topic of congenitally corrected transposition of the great arteries
in fetal life. We spoke with doctor Jennifer Cone of
Mount Sinai about her recent Fetal Heart Society project, and
for those of you with an interest in fetal cardiology
as well as congenitally corrected transposition, I'd certainly recommend you
(01:29):
to take a listen to last week's episode two hundred
and fifty seven. As I say most weeks, if you'd
like to get in touch with me, it's easy to
remember my email. It's Pdheart at gmail dot com. This
week we move on to the world of cardiac transplantation
and heart failure. The title of the work we'll be
reviewing is the Impact of Race and health coverage on
(01:50):
listing and wait list Mortality in Pediatric Cardiac Transplantation. This
work comes from the Pediatric Heart Transplant Society. The first
author is Neha Bansel and the senior author is Simon Erschall.
At the time that doctor Bonnsell wrote most of this paper,
she worked at the Children's Hospital at Montefior. I'm pleased
that she is now working with me here at the
(02:10):
Icon School of Medicine at Mount Sinai. When we're done
reviewing the paper, doctor Bonsell has kindly agreed to speak
with us about it. Therefore, let's move straight onto this
article and then a conversation about the impact of race
and health coverage on pediatric heart transplantation. This week's work
is another in the growing literature examining the impact of
race and health care inequities and outcomes, in this case
(02:33):
in the world of pediatric heart failure and transplantation. The
authors explain that there exists data showing that race and
insurance are associated with mortality following heart transplantation, but the
data on racial disparities in pediatric patients are limited, and
they also mentioned that the role of race and insurance
on weightless mortality has not been extensively studied. With this
(02:55):
as a background, the author's hypothesize that race and insurance
coverage at the time of listing would affect clinical condition
at the time of listing and have an important impact
on weight list mortality and outcomes. And they also hypothesized
that with the advent of the Affordable Care Act in
the United States under the Obama administration, in which more
of the population was ensured, that these associations between race
(03:18):
or insurance status and outcomes would be mitigated. Finally, the
authors explained that they compared the weight list mortality between
groups looking for risk factors for weight list mortality. This
was a multi center, prospective, event driven database and rolling
patients aged less center equal to eighteen years who were
listed for heart transplantation and the PHTS data was queried
(03:40):
over twenty years from January first, two thousand to December
thirty first, twenty nineteen, including all patients in the fifty
five participating centers. Some of you may recall our podcast
speaking with pediatric heart transplant pioneer James Kirklan back in
episode one hundred and twenty from three years ago about
the genesis of this rich data base, and I might
(04:01):
add that doctor Kirkland is a co author of this work.
For this work, if you were retransplanted, over age eighteen
or had a multi organ transplant, you were excluded. Patients
were divided by how they self identified race into three
categories and these were black, White, and other. Insurance coverage
for this work was divided into governmental insurance, US private insurance,
(04:24):
and non US single payer systems like those in the
UK or Canada. The authors also divided the time period
into halves so that a comparison between the earlier first
ten year period of two thousand to two thousand and
nine could be compared with the twenty ten to twenty
nineteen period, and this was done to help determine if
the advent of the Affordable Care Act in the United
(04:45):
States that expanded governmental medicaid coverage would have any impact
and onto the results. In this work, there were basically
seven thousand, nine hundred and eighty six patients, of which
sixty seven point five percent or five thousand, three three
hundred and ninety one were white, seventeen point nine percent
or fourteen twenty eight were black. Looking at the insurance status,
(05:08):
three thousand, eight hundred and thirty one or forty eight
percent were on US governmental public insurance, three two hundred
and fifty seven or forty one percent had private insurance,
and eight hundred and ninety eight or eleven percent were
using non US single pair system coverage. There are many
data in this work, with many tables and graphs, and
as I often say, please do go to the document
(05:31):
which is referenced in the show notes to read the
granular data. However, some of the more critical data that
were observed were as follows. First, black patients were older,
more likely to have US governmental insurance and more likely
to be cardiomyopathy patients versus congenital heart disease patients at
the time of transplant listing. Second, black patients were more
(05:53):
likely to be higher status listing in hospital or on
inotropes or a VAD, meaning that they were in general
sicker and likely presenting later to medical attention than other
racial groups. Third, when looking at the weightless time, black
patients were on it for less time compared with other races,
but had significantly higher weightless mortality in comparison with other races,
(06:17):
but this was largely driven by the early era in
which there was no Affordable Care Act. There was actually
no difference in weightless mortality in the second era of
the Affordable Care Act period, suggesting the impact of insurance
coverage on these data. When performing a competing risk outcome
analysis compared to white children, black kids were more likely
(06:37):
to die while waiting on the transplant list. At one
year on the waitlist, thirteen point six percent of black
children died without a transplant, compared to eleven point four
percent of white children, and this difference was significant. The
authors performed a multi variable risk adjusted model, and black
race had a hazard ratio of one point thirty six
for death, demonstrating it to be an in dependent risk
(07:00):
factor for higher weight list mortality. Other risk factors for
mortality on the weight list were in hospital listing with
the hazard ratio of two point five to two, congenital
heart disease with a hazard ratio of two point two,
mechanical ventilation at listing with a hazard ratio of one
point eight, nine, inotropes at listening with a hazard ratio
of one point two five, and higher billy rubin at
(07:22):
listing with a hazard ratio slightly above one. In their
discussion the author's state and I quote. In this analysis
of the PHTS database from the last two decades, we
found significant disparities in listing conditions and weightless outcomes, reflecting
a disadvantage for black children at the time of listing.
Black children are significantly sicker compared to white and other
(07:44):
raised children, as is reflected by their higher urgency listing
status in hospital listing and higher proportion of patients on
ininotropic or bad support. Following listing, Black children faces significantly
higher weightless mortality, especially in the privately insured group. They
also show a stronger tendency to deteriorate clinically while waiting,
(08:05):
as reflected by significant patients requiring escalation and listing status
and vance support from listening until the time of transplantation.
For those children that received a transplant, Black children had
a shorter weightless time, had similar likelihood of receiving a
transplant or being removed from the waitlist, but were more
likely to die waiting compared to other races. Black and
(08:27):
other non white races were found to be independent factors
for weightless mortality and children listed for heart transplantation. Fortunately,
this was found to be driven by a difference in
the earlier era, with similar survival in the more recent decade.
The author's review how the finding of black patients being
sicker at the time of listing was similar to another
database study published previously, showing in that work that both
(08:50):
black race and Hispanic background both were associated with higher
urgency in comparison with white patients. They offer some suggested
explanations or the racial disadvantages shown, including systemic racism and
bias in the US healthcare system, and even mentioned some
data suggesting that minority patients are less likely to have
transplant ideas even brought up to them They mention also
(09:14):
possible mistrust by black people towards the medical establishment, which
is in part due to the fact that the majority
of healthcare providers traditionally have not been black. The authors
mentioned an interesting observation that black kids who had private
insurance actually had more weightless mortality than white or other
children and offer us some suggestions as to why this
(09:34):
may be and this will certainly be an interesting question
to oppose to doctor Bonsell later on in the podcast,
the authors make the observation that though the number of
patients with a single pair system in this study were
very small and likely too small to drow statistically significant conclusions,
those who were in the single pair system with universal
access to healthcare had no racial differences in weightless mortality
(09:56):
or level of illness observed, suggesting that equal all access
to healthcare may substantially mitigate some aspects of race based
disparities in this setting, and they point to the change
and impact of race during the time after the Affordable
Care Act is possibly supporting this notion. The authors also
mention the development of the PHTS Racial Disparity Task Force
(10:18):
to study the contribution of physician implicit bias in pediatric
transplant in order to see if this can be remedied,
and this too might be an interesting thing to discuss
with doctor Bonsel. In regards to limitations, the authors point
to the self identification of the patient's race in this
database and how race is more of a social construct
that is a weak proxy for genetic ancestry. They also
(10:41):
remind us how the database really has no useful information
regarding time from diagnosis to referral or to listening, which
would be useful of course, and so they conclude Black
children are sicker at the time of listing, are more
likely to deteriorate while waiting, and face significantly higher weightless mortality,
especially in the privately and short group. This is despite
(11:03):
older age at listing and a greater proportion of cardiomiopathy
and black children, factors traditionally associated with better outcomes. However,
these trends seem to be driven by an earlier era,
with improvement in the recent era associated with US healthcare reforms.
The social construct of race appears to impact consideration of
(11:24):
access to and referral to pediatric cardiac transplant and chances
to survive to transplant, independent of insurance coverage. Resulting in
a disadvantage for black children. Well, I think this is
a very interesting and important work once again showing the
very meaningful impact of race on healthcare outcomes, this time
on weightless mortality in pediatric heart transplant candidates. What are
(11:46):
the factors that the authors believe likely account for these
important differences, and how is the PHTS Racial Disparity Task
Force addressing some of these. In the interest of time,
I think we should move straight ahead to our discussion
of this week's work with its first author, doctor Bonsell.
Doctor Neha Bonsel is a systant Professor of Pediatrics at
the Icon School of Medicine at Mount Sinai, but wrote
(12:08):
much of this project while working at the Albert Einstein
College of Medicine. Doctor Bonnsell's clinical focus is on heart
failure and transplantation, and she also has a keen interest
in the cardiac care of survivors of childhood cancer. She
is a graduate of the prestigious seth Gs Medical College
and K. E. M Hospital in Mumbai, India, and completed
both residency and pediatrics and Fellowship in Pediatric Carniology at
(12:32):
the Children's Hospital of Michigan. She is an awardee of
the Children's Cardiomopathy Foundation and Kyle John Rizmyzuski Foundation Research
Scholar Awards, and is a member of multiple professional societies,
including the PHTS, the Action Network ISHLT, and the American
Heart Association. It is a delight to welcome my friend
(12:52):
and colleague, doctor Bonnsell on the show to discuss this
week's work. Welcome Nehan to the podcast.
Speaker 2 (12:58):
I'm here now with nehabom Naha. Thank you so much
for joining us this week on the podcast.
Speaker 3 (13:03):
Thank you so much, doctor Pass for having.
Speaker 2 (13:05):
Me great pleasure, very much enjoyed this very important work
that you wrote with PHTS, So thank you for that.
You know. Noay, how oftentimes I like to ask a
guest to offer for the audience what they believe might
be the three or four most important findings or observations
of their work, sort of as a means of summary,
informed by your obvious deep insights into these data. Could
(13:26):
you maybe provide for the audience a few, shall we say,
key takeaways from your work.
Speaker 3 (13:31):
Thank you so much, doctor Pass. So yeah, so, I
think that the most important thing that we found was
that in the last twenty years in the pediatric hert
Transplants Society data, which is a very large database of
heart transplants from the nineteen nineties. We found that black
children continue to have significant disparities at the time of
(13:55):
being listed for a heart transplant. They present sicker. Even
once they get listed, they have a higher weightless mortality.
We found it very interestingly that the black patients who
were on private insurance seemed to have worse weightless mortality
than those who were on governmental insurance, which was kind
(14:16):
of a unique finding in our study. And then the
fact that race was an independent predictor of weightless mortality,
which kind of was also after doing a multi variable analysis,
was also like the important factor. Now, the one important
thing that I think if you tease out from our
(14:36):
data is that when we divided our cohort by eras,
so looking at eras before what we think is the
Affordable Care Act that came into place, we did have
the significant racial disparity in the weightless mortality. However, in
the recent times this disparity seemed to disappear, which was,
you know, another unique finding of the study. So we're
(14:59):
hope sing that some of the measures that are being
taken in the awareness that is being generated has helped
with the you know, with this disparity somewhat.
Speaker 2 (15:09):
Well, that's terrific, Thank you very much as a great summary.
You know, neha As, you just said black children did
worse over the twenty year period when listed for transplant
than white children in your study and the finding you've
made with your co authors is an association of course,
rather than causation. I'm wondering if you could summarize for
the audience with you and your co investigators believe are
(15:31):
the most important drivers of these worse outcome for black
children in comparison.
Speaker 3 (15:35):
To white Right, So we think that black children, you know,
presented sicker at the time of listening for heart transplant. Now, unfortunately,
PhD AS data does not collect collect you know, who
gets referred or evaluated. It only collects patients who get listed.
So some of the factors that we thought were you know,
(15:58):
obviously there could be an unrecognized bias in referrals, like
there are adult studies that have shown that black adult
black patients get referred for a VAD more than a transplant,
or get delayed referrals. There are sometimes delays and seeking
medical attention by the patients themselves. Due to access or
(16:18):
due to even insurance coverage issues, because we do know
that there have been consistently issues with medical coverage for
some of these patients, and so those were some of
the hypothetical reasons that we were thinking. Unfortunately, pht AS
data has not there's not a very good way of
(16:39):
studying this using the Pediatric car trans Society data. But
the Racial Disparity Task Forces now gearing towards trying to
study more community risk factors towards these disparities.
Speaker 2 (16:51):
Well, one of the most interesting and maybe non intuitive
findings in your work, which you hinted at a moment ago,
was that black children were not actually who are not
on public assistance but instead were privately insured, actually had
worse weightless mortality in comparison to other races in comparison
with those who were on public assistance. And that's contrary
(17:11):
to other literature suggesting that only those on public insurance
might demonstrate this insured this association. I'm wondering if you
have any thoughts as to why this kind of nonintuitive
finding was demonstrated by your work.
Speaker 3 (17:24):
Yeah, we were actually quite perplexed when we did the
analysis and found this. For our research study so we
think that there's a complex relationship that is not very
well understood. We compared the black patients on governmental insurance
as well as on private insurance in terms of their
(17:45):
clinical status or how they differed. We thought maybe the
patients themselves differed in some way. Unfortunately, whatever factors we studied,
it didn't really look like the two cohorts are very different.
But there might be way in which they might be
different that we're unable to study at this point in time.
We also think there could be difference in access to,
(18:09):
you know, different centers, or even medication costs. You know,
they may face higher out of pocket costs, or there
might be bias with the referrals or approvals of you know,
referrals to all these tertiary care centers in the private
insurance that we maybe don't see in governmental insurance. Some
(18:30):
adult studies have shown that patients on public assistance or
gunment insurance actually have very less out of pocket costs
and sometimes having more out of pocket costs with these
private insurances have been a deterrent for some patients in
seeking medical care appropriately, and we wonder if those were
some of the reasons why we found this However, yes,
(18:52):
it's a unique finding and definitely needs a little more
delving into in the future.
Speaker 2 (18:56):
Yeah, I mean, certainly all private insurance is not the same, right,
there's high deductible insurances. And you know, both of us
worked at Montafior and I know you were working at
Montifior during most of the time that you wrote this paper,
and we both are aware that a lot of people
who are on private insurance had to have secondary insurance
because they're primary what didn't cover a lot of things.
(19:18):
So that's what I was thinking. Yeah, I read that,
you know in the work, and you just a moment
ago mentioned the so called PHTS Racial Disparity Task Force
that's studying physician implicit bias in transplantation. I'm wondering what
sorts of work is that task force doing to combat
the possible role that the heart failure transplant doctors or
(19:38):
nurses or nps may have that may be contributing to
some of the observations in your work.
Speaker 3 (19:44):
Yeah, thank you so much for that. So the PHTS
or the Pedetric Carturans Society set up the Racial Disparity
Task Force in twenty twenty after the overwhelming public response
that highlighted inequalities that were found in societies with the
COVID pandemic. And the goals sort of include, you know,
studying the impact of social injustice and our practice, to
(20:07):
promote culturally competent interactions with the families, and to providing
society membership with education and tools to eliminate these disparities,
and to support research projects just like this one to
study the social factors that impact transplant and heart failure.
And so this research project was part of the Racial
(20:28):
Disparity task Force that wanted to study how different social
factors impact pediatric heart transplantation. There's another research study that
is actually studying the post heart transplant outcomes in you know,
different races and different insurance coverages. And there's another task
(20:48):
force that is studying implicit bias in you know referral
or evaluation process of pediatric heart transplantation. And you know,
we're hoping that slow this develops into you know, making
some changes, you know, in mitigating the disparities in the future.
But right now the test force is kind of studying
(21:09):
what are the different factors that they can modify.
Speaker 2 (21:13):
In this process. Well, it's great that the society has
a task for us, and I'm sure we'll see more
work on that going forward. Well they have for those
in the audience. It's almost three o'clock and I've gotten
doctor Bonnsell right in the middle of a busy day.
She's both on service for the cardiac ic us. She's
also our transplant heart failure on called. Doctor been very
(21:34):
very busy, he was on call all weekend, so I
very much appreciate your being on. So I'm going to
finish up with just a final question which I sometimes ask,
you know, for the younger members of the podcast audience.
I'm wondering if you could share with the listeners how
you practically went about conducting such a study. Who do
you have to suggest it to. Is there a cost
associated with it beyond being a member of PHTS? What
(21:54):
are some of the nuts and bolts of actually doing
such a project? Right?
Speaker 3 (21:57):
So, the Pediatric Cart Trands and Society is a large
society and almost all major turns hospital and pediatric cart
transplant centers are a part already members of this society,
which makes it easier for junior faculty fellows as well
as you know, residents who might be interested to have
access to the data. Now, there are a couple of
(22:19):
ways to be able to conduct a research with the PHTS.
One is that they have proposals open twice a year,
So you kind of submit your proposal to the PHTS
and they picked the two best proposals out of those submitted,
and they approve those for analysis by the DCC. Another
(22:40):
way is that the PHS does give out limited data sets.
There is an additional cost to it that the center
has to bear, but it's quite minimal compared to you
know what data sets cost outside, like you know some
of the other surgical data sets we know, and you
can get the limited data set from the DCC and
conduct your own research with your own statistician. I would
(23:03):
say that if somebody's interested in doing research with the
PHTS talked to your heart Failure transplant attendings, if you're
already members, you can have them mentor you into writing
a proposal and submitting it. And I know that the
next set of proposals is due in October.
Speaker 2 (23:19):
Well, that's very good practical information. Looking forward to hearing
about your next proposal now, Well, Nay, I can't thank
you enough for joining us this week on the podcast.
Also a podcast host yourself, so I appreciate your trading
going on to the other side as it were. Congratulations
to you and all of the members of the PHTS
(23:39):
so many of the people who are your co authors
or friends of mine. Shout out to Scott Auback especially,
and doctor Kirkland, who, as you remember, was kind enough
to be on my podcast and also on yours, just
two of the many, many names in your wonderful paper
who worked on this paper. Congratulations and thank you so much.
Speaker 3 (23:58):
Thank you so much, doctor pass appreciate it great pleasure.
Speaker 1 (24:01):
Well, I think you'll agree that doctor Bonnsel really clearly
explained her research for us and answered a number of
important questions about these troubling findings. I think that her
comments about the PHTS Racial Disparity Task Force and its
important work to be very interesting, and I'm sure you
share with me interest in seeing what comes of that
group's important work. I also found her comments on the
(24:22):
practical steps to performing such a study to be very helpful. Finally,
I wish to mention to anyone interested that doctor Bonnsell
is a podcast host herself, as the host of the
in the Flow podcast, in which she speaks with important
luminaries like doctor Steve Lipschaltz and doctor Lori West, just
to name two of the more prominent figures she's had
on her show. As I said last week, I hope
(24:45):
you're leaving this week's podcast again enthused about the future
of our field with such important up and coming superstars
as doctor Bonsel. I'd once again like to thank you
for taking time out of her very busy week to
discuss the suit's work with us. Two conclud this replay
episode in which we speak with doctor Nehabansel from Mount Sinai.
We end with a wonderful duet from the opera La
(25:07):
Sonambula by Bellini. I'm playing this live excerpt from three
years ago because I noticed that the Metropolitan Opera in
the early fall will be highlighting this opera with the
very two singers that we're going to hear in this
live pirated recording from three years ago in Spain. Specifically,
we'll be hearing the great American soprano Nadine Sierra and
(25:28):
the wonderful Spanish tenor Xavier Aduaga. I hope you enjoyed
this Act one love duet, and I look forward to
seeing everybody next week. For a brand new episode.
Speaker 4 (26:04):
S S s SEP SEP s se P s s
(27:49):
H something to go by, to go, sim do se
(30:00):
and so if you coo
Speaker 2 (30:26):
So
Hello everybody, This is Rob Pass, the host of the
Pdhart podcast. This week we venture back three years to
review an interesting paper on the effects of race and
insurance status on wait list outcomes in pediatric heart transplantation,
and we speak with doctor Nehabonsel, who's presently Associate Professor
of Pediatrics at my own institution, the Icon School of
Medicine at Mount Sinai. I hope everybody enjoys this important episode.
(00:23):
I'll see you back next week with a brand new episode.
Welcome to Pedihart Pediatric Cardiology Today. My name is doctor
(00:46):
Robert Pass, and I'm the host of this podcast. I
am Professor of Pediatrics at the Icon School of Medicine
at Mount Sinai, where I'm also the Chief of Pediatric Cardiology.
Thank you very much for joining me for this two
hundred and fifty eighth episode of the podcast. I hope
everybody enjoyed last week's extra special Friday, in which we
released two episodes. One was on the upcoming World Congress
(01:07):
of Pediatric Cardiology and Surgery and the other was on
the topic of congenitally corrected transposition of the great arteries
in fetal life. We spoke with doctor Jennifer Cone of
Mount Sinai about her recent Fetal Heart Society project, and
for those of you with an interest in fetal cardiology
as well as congenitally corrected transposition, I'd certainly recommend you
(01:29):
to take a listen to last week's episode two hundred
and fifty seven. As I say most weeks, if you'd
like to get in touch with me, it's easy to
remember my email. It's Pdheart at gmail dot com. This
week we move on to the world of cardiac transplantation
and heart failure. The title of the work we'll be
reviewing is the Impact of Race and health coverage on
(01:50):
listing and wait list Mortality in Pediatric Cardiac Transplantation. This
work comes from the Pediatric Heart Transplant Society. The first
author is Neha Bansel and the senior author is Simon Erschall.
At the time that doctor Bonnsell wrote most of this paper,
she worked at the Children's Hospital at Montefior. I'm pleased
that she is now working with me here at the
(02:10):
Icon School of Medicine at Mount Sinai. When we're done
reviewing the paper, doctor Bonsell has kindly agreed to speak
with us about it. Therefore, let's move straight onto this
article and then a conversation about the impact of race
and health coverage on pediatric heart transplantation. This week's work
is another in the growing literature examining the impact of
race and health care inequities and outcomes, in this case
(02:33):
in the world of pediatric heart failure and transplantation. The
authors explain that there exists data showing that race and
insurance are associated with mortality following heart transplantation, but the
data on racial disparities in pediatric patients are limited, and
they also mentioned that the role of race and insurance
on weightless mortality has not been extensively studied. With this
(02:55):
as a background, the author's hypothesize that race and insurance
coverage at the time of listing would affect clinical condition
at the time of listing and have an important impact
on weight list mortality and outcomes. And they also hypothesized
that with the advent of the Affordable Care Act in
the United States under the Obama administration, in which more
of the population was ensured, that these associations between race
(03:18):
or insurance status and outcomes would be mitigated. Finally, the
authors explained that they compared the weight list mortality between
groups looking for risk factors for weight list mortality. This
was a multi center, prospective, event driven database and rolling
patients aged less center equal to eighteen years who were
listed for heart transplantation and the PHTS data was queried
(03:40):
over twenty years from January first, two thousand to December
thirty first, twenty nineteen, including all patients in the fifty
five participating centers. Some of you may recall our podcast
speaking with pediatric heart transplant pioneer James Kirklan back in
episode one hundred and twenty from three years ago about
the genesis of this rich data base, and I might
(04:01):
add that doctor Kirkland is a co author of this work.
For this work, if you were retransplanted, over age eighteen
or had a multi organ transplant, you were excluded. Patients
were divided by how they self identified race into three
categories and these were black, White, and other. Insurance coverage
for this work was divided into governmental insurance, US private insurance,
(04:24):
and non US single payer systems like those in the
UK or Canada. The authors also divided the time period
into halves so that a comparison between the earlier first
ten year period of two thousand to two thousand and
nine could be compared with the twenty ten to twenty
nineteen period, and this was done to help determine if
the advent of the Affordable Care Act in the United
(04:45):
States that expanded governmental medicaid coverage would have any impact
and onto the results. In this work, there were basically
seven thousand, nine hundred and eighty six patients, of which
sixty seven point five percent or five thousand, three three
hundred and ninety one were white, seventeen point nine percent
or fourteen twenty eight were black. Looking at the insurance status,
(05:08):
three thousand, eight hundred and thirty one or forty eight
percent were on US governmental public insurance, three two hundred
and fifty seven or forty one percent had private insurance,
and eight hundred and ninety eight or eleven percent were
using non US single pair system coverage. There are many
data in this work, with many tables and graphs, and
as I often say, please do go to the document
(05:31):
which is referenced in the show notes to read the
granular data. However, some of the more critical data that
were observed were as follows. First, black patients were older,
more likely to have US governmental insurance and more likely
to be cardiomyopathy patients versus congenital heart disease patients at
the time of transplant listing. Second, black patients were more
(05:53):
likely to be higher status listing in hospital or on
inotropes or a VAD, meaning that they were in general
sicker and likely presenting later to medical attention than other
racial groups. Third, when looking at the weightless time, black
patients were on it for less time compared with other races,
but had significantly higher weightless mortality in comparison with other races,
(06:17):
but this was largely driven by the early era in
which there was no Affordable Care Act. There was actually
no difference in weightless mortality in the second era of
the Affordable Care Act period, suggesting the impact of insurance
coverage on these data. When performing a competing risk outcome
analysis compared to white children, black kids were more likely
(06:37):
to die while waiting on the transplant list. At one
year on the waitlist, thirteen point six percent of black
children died without a transplant, compared to eleven point four
percent of white children, and this difference was significant. The
authors performed a multi variable risk adjusted model, and black
race had a hazard ratio of one point thirty six
for death, demonstrating it to be an in dependent risk
(07:00):
factor for higher weight list mortality. Other risk factors for
mortality on the weight list were in hospital listing with
the hazard ratio of two point five to two, congenital
heart disease with a hazard ratio of two point two,
mechanical ventilation at listing with a hazard ratio of one
point eight, nine, inotropes at listening with a hazard ratio
of one point two five, and higher billy rubin at
(07:22):
listing with a hazard ratio slightly above one. In their
discussion the author's state and I quote. In this analysis
of the PHTS database from the last two decades, we
found significant disparities in listing conditions and weightless outcomes, reflecting
a disadvantage for black children at the time of listing.
Black children are significantly sicker compared to white and other
(07:44):
raised children, as is reflected by their higher urgency listing
status in hospital listing and higher proportion of patients on
ininotropic or bad support. Following listing, Black children faces significantly
higher weightless mortality, especially in the privately insured group. They
also show a stronger tendency to deteriorate clinically while waiting,
(08:05):
as reflected by significant patients requiring escalation and listing status
and vance support from listening until the time of transplantation.
For those children that received a transplant, Black children had
a shorter weightless time, had similar likelihood of receiving a
transplant or being removed from the waitlist, but were more
likely to die waiting compared to other races. Black and
(08:27):
other non white races were found to be independent factors
for weightless mortality and children listed for heart transplantation. Fortunately,
this was found to be driven by a difference in
the earlier era, with similar survival in the more recent decade.
The author's review how the finding of black patients being
sicker at the time of listing was similar to another
database study published previously, showing in that work that both
(08:50):
black race and Hispanic background both were associated with higher
urgency in comparison with white patients. They offer some suggested
explanations or the racial disadvantages shown, including systemic racism and
bias in the US healthcare system, and even mentioned some
data suggesting that minority patients are less likely to have
transplant ideas even brought up to them They mention also
(09:14):
possible mistrust by black people towards the medical establishment, which
is in part due to the fact that the majority
of healthcare providers traditionally have not been black. The authors
mentioned an interesting observation that black kids who had private
insurance actually had more weightless mortality than white or other
children and offer us some suggestions as to why this
(09:34):
may be and this will certainly be an interesting question
to oppose to doctor Bonsell later on in the podcast,
the authors make the observation that though the number of
patients with a single pair system in this study were
very small and likely too small to drow statistically significant conclusions,
those who were in the single pair system with universal
access to healthcare had no racial differences in weightless mortality
(09:56):
or level of illness observed, suggesting that equal all access
to healthcare may substantially mitigate some aspects of race based
disparities in this setting, and they point to the change
and impact of race during the time after the Affordable
Care Act is possibly supporting this notion. The authors also
mention the development of the PHTS Racial Disparity Task Force
(10:18):
to study the contribution of physician implicit bias in pediatric
transplant in order to see if this can be remedied,
and this too might be an interesting thing to discuss
with doctor Bonsel. In regards to limitations, the authors point
to the self identification of the patient's race in this
database and how race is more of a social construct
that is a weak proxy for genetic ancestry. They also
(10:41):
remind us how the database really has no useful information
regarding time from diagnosis to referral or to listening, which
would be useful of course, and so they conclude Black
children are sicker at the time of listing, are more
likely to deteriorate while waiting, and face significantly higher weightless mortality,
especially in the privately and short group. This is despite
(11:03):
older age at listing and a greater proportion of cardiomiopathy
and black children, factors traditionally associated with better outcomes. However,
these trends seem to be driven by an earlier era,
with improvement in the recent era associated with US healthcare reforms.
The social construct of race appears to impact consideration of
(11:24):
access to and referral to pediatric cardiac transplant and chances
to survive to transplant, independent of insurance coverage. Resulting in
a disadvantage for black children. Well, I think this is
a very interesting and important work once again showing the
very meaningful impact of race on healthcare outcomes, this time
on weightless mortality in pediatric heart transplant candidates. What are
(11:46):
the factors that the authors believe likely account for these
important differences, and how is the PHTS Racial Disparity Task
Force addressing some of these. In the interest of time,
I think we should move straight ahead to our discussion
of this week's work with its first author, doctor Bonsell.
Doctor Neha Bonsel is a systant Professor of Pediatrics at
the Icon School of Medicine at Mount Sinai, but wrote
(12:08):
much of this project while working at the Albert Einstein
College of Medicine. Doctor Bonnsell's clinical focus is on heart
failure and transplantation, and she also has a keen interest
in the cardiac care of survivors of childhood cancer. She
is a graduate of the prestigious seth Gs Medical College
and K. E. M Hospital in Mumbai, India, and completed
both residency and pediatrics and Fellowship in Pediatric Carniology at
(12:32):
the Children's Hospital of Michigan. She is an awardee of
the Children's Cardiomopathy Foundation and Kyle John Rizmyzuski Foundation Research
Scholar Awards, and is a member of multiple professional societies,
including the PHTS, the Action Network ISHLT, and the American
Heart Association. It is a delight to welcome my friend
(12:52):
and colleague, doctor Bonnsell on the show to discuss this
week's work. Welcome Nehan to the podcast.
Speaker 2 (12:58):
I'm here now with nehabom Naha. Thank you so much
for joining us this week on the podcast.
Speaker 3 (13:03):
Thank you so much, doctor Pass for having.
Speaker 2 (13:05):
Me great pleasure, very much enjoyed this very important work
that you wrote with PHTS, So thank you for that.
You know. Noay, how oftentimes I like to ask a
guest to offer for the audience what they believe might
be the three or four most important findings or observations
of their work, sort of as a means of summary,
informed by your obvious deep insights into these data. Could
(13:26):
you maybe provide for the audience a few, shall we say,
key takeaways from your work.
Speaker 3 (13:31):
Thank you so much, doctor Pass. So yeah, so, I
think that the most important thing that we found was
that in the last twenty years in the pediatric hert
Transplants Society data, which is a very large database of
heart transplants from the nineteen nineties. We found that black
children continue to have significant disparities at the time of
(13:55):
being listed for a heart transplant. They present sicker. Even
once they get listed, they have a higher weightless mortality.
We found it very interestingly that the black patients who
were on private insurance seemed to have worse weightless mortality
than those who were on governmental insurance, which was kind
(14:16):
of a unique finding in our study. And then the
fact that race was an independent predictor of weightless mortality,
which kind of was also after doing a multi variable analysis,
was also like the important factor. Now, the one important
thing that I think if you tease out from our
(14:36):
data is that when we divided our cohort by eras,
so looking at eras before what we think is the
Affordable Care Act that came into place, we did have
the significant racial disparity in the weightless mortality. However, in
the recent times this disparity seemed to disappear, which was,
you know, another unique finding of the study. So we're
(14:59):
hope sing that some of the measures that are being
taken in the awareness that is being generated has helped
with the you know, with this disparity somewhat.
Speaker 2 (15:09):
Well, that's terrific, Thank you very much as a great summary.
You know, neha As, you just said black children did
worse over the twenty year period when listed for transplant
than white children in your study and the finding you've
made with your co authors is an association of course,
rather than causation. I'm wondering if you could summarize for
the audience with you and your co investigators believe are
(15:31):
the most important drivers of these worse outcome for black
children in comparison.
Speaker 3 (15:35):
To white Right, So we think that black children, you know,
presented sicker at the time of listening for heart transplant. Now, unfortunately,
PhD AS data does not collect collect you know, who
gets referred or evaluated. It only collects patients who get listed.
So some of the factors that we thought were you know,
(15:58):
obviously there could be an unrecognized bias in referrals, like
there are adult studies that have shown that black adult
black patients get referred for a VAD more than a transplant,
or get delayed referrals. There are sometimes delays and seeking
medical attention by the patients themselves. Due to access or
(16:18):
due to even insurance coverage issues, because we do know
that there have been consistently issues with medical coverage for
some of these patients, and so those were some of
the hypothetical reasons that we were thinking. Unfortunately, pht AS
data has not there's not a very good way of
(16:39):
studying this using the Pediatric car trans Society data. But
the Racial Disparity Task Forces now gearing towards trying to
study more community risk factors towards these disparities.
Speaker 2 (16:51):
Well, one of the most interesting and maybe non intuitive
findings in your work, which you hinted at a moment ago,
was that black children were not actually who are not
on public assistance but instead were privately insured, actually had
worse weightless mortality in comparison to other races in comparison
with those who were on public assistance. And that's contrary
(17:11):
to other literature suggesting that only those on public insurance
might demonstrate this insured this association. I'm wondering if you
have any thoughts as to why this kind of nonintuitive
finding was demonstrated by your work.
Speaker 3 (17:24):
Yeah, we were actually quite perplexed when we did the
analysis and found this. For our research study so we
think that there's a complex relationship that is not very
well understood. We compared the black patients on governmental insurance
as well as on private insurance in terms of their
(17:45):
clinical status or how they differed. We thought maybe the
patients themselves differed in some way. Unfortunately, whatever factors we studied,
it didn't really look like the two cohorts are very different.
But there might be way in which they might be
different that we're unable to study at this point in time.
We also think there could be difference in access to,
(18:09):
you know, different centers, or even medication costs. You know,
they may face higher out of pocket costs, or there
might be bias with the referrals or approvals of you know,
referrals to all these tertiary care centers in the private
insurance that we maybe don't see in governmental insurance. Some
(18:30):
adult studies have shown that patients on public assistance or
gunment insurance actually have very less out of pocket costs
and sometimes having more out of pocket costs with these
private insurances have been a deterrent for some patients in
seeking medical care appropriately, and we wonder if those were
some of the reasons why we found this However, yes,
(18:52):
it's a unique finding and definitely needs a little more
delving into in the future.
Speaker 2 (18:56):
Yeah, I mean, certainly all private insurance is not the same, right,
there's high deductible insurances. And you know, both of us
worked at Montafior and I know you were working at
Montifior during most of the time that you wrote this paper,
and we both are aware that a lot of people
who are on private insurance had to have secondary insurance
because they're primary what didn't cover a lot of things.
(19:18):
So that's what I was thinking. Yeah, I read that,
you know in the work, and you just a moment
ago mentioned the so called PHTS Racial Disparity Task Force
that's studying physician implicit bias in transplantation. I'm wondering what
sorts of work is that task force doing to combat
the possible role that the heart failure transplant doctors or
(19:38):
nurses or nps may have that may be contributing to
some of the observations in your work.
Speaker 3 (19:44):
Yeah, thank you so much for that. So the PHTS
or the Pedetric Carturans Society set up the Racial Disparity
Task Force in twenty twenty after the overwhelming public response
that highlighted inequalities that were found in societies with the
COVID pandemic. And the goals sort of include, you know,
studying the impact of social injustice and our practice, to
(20:07):
promote culturally competent interactions with the families, and to providing
society membership with education and tools to eliminate these disparities,
and to support research projects just like this one to
study the social factors that impact transplant and heart failure.
And so this research project was part of the Racial
(20:28):
Disparity task Force that wanted to study how different social
factors impact pediatric heart transplantation. There's another research study that
is actually studying the post heart transplant outcomes in you know,
different races and different insurance coverages. And there's another task
(20:48):
force that is studying implicit bias in you know referral
or evaluation process of pediatric heart transplantation. And you know,
we're hoping that slow this develops into you know, making
some changes, you know, in mitigating the disparities in the future.
But right now the test force is kind of studying
(21:09):
what are the different factors that they can modify.
Speaker 2 (21:13):
In this process. Well, it's great that the society has
a task for us, and I'm sure we'll see more
work on that going forward. Well they have for those
in the audience. It's almost three o'clock and I've gotten
doctor Bonnsell right in the middle of a busy day.
She's both on service for the cardiac ic us. She's
also our transplant heart failure on called. Doctor been very
(21:34):
very busy, he was on call all weekend, so I
very much appreciate your being on. So I'm going to
finish up with just a final question which I sometimes ask,
you know, for the younger members of the podcast audience.
I'm wondering if you could share with the listeners how
you practically went about conducting such a study. Who do
you have to suggest it to. Is there a cost
associated with it beyond being a member of PHTS? What
(21:54):
are some of the nuts and bolts of actually doing
such a project? Right?
Speaker 3 (21:57):
So, the Pediatric Cart Trands and Society is a large
society and almost all major turns hospital and pediatric cart
transplant centers are a part already members of this society,
which makes it easier for junior faculty fellows as well
as you know, residents who might be interested to have
access to the data. Now, there are a couple of
(22:19):
ways to be able to conduct a research with the PHTS.
One is that they have proposals open twice a year,
So you kind of submit your proposal to the PHTS
and they picked the two best proposals out of those submitted,
and they approve those for analysis by the DCC. Another
(22:40):
way is that the PHS does give out limited data sets.
There is an additional cost to it that the center
has to bear, but it's quite minimal compared to you
know what data sets cost outside, like you know some
of the other surgical data sets we know, and you
can get the limited data set from the DCC and
conduct your own research with your own statistician. I would
(23:03):
say that if somebody's interested in doing research with the
PHTS talked to your heart Failure transplant attendings, if you're
already members, you can have them mentor you into writing
a proposal and submitting it. And I know that the
next set of proposals is due in October.
Speaker 2 (23:19):
Well, that's very good practical information. Looking forward to hearing
about your next proposal now, Well, Nay, I can't thank
you enough for joining us this week on the podcast.
Also a podcast host yourself, so I appreciate your trading
going on to the other side as it were. Congratulations
to you and all of the members of the PHTS
(23:39):
so many of the people who are your co authors
or friends of mine. Shout out to Scott Auback especially,
and doctor Kirkland, who, as you remember, was kind enough
to be on my podcast and also on yours, just
two of the many, many names in your wonderful paper
who worked on this paper. Congratulations and thank you so much.
Speaker 3 (23:58):
Thank you so much, doctor pass appreciate it great pleasure.
Speaker 1 (24:01):
Well, I think you'll agree that doctor Bonnsel really clearly
explained her research for us and answered a number of
important questions about these troubling findings. I think that her
comments about the PHTS Racial Disparity Task Force and its
important work to be very interesting, and I'm sure you
share with me interest in seeing what comes of that
group's important work. I also found her comments on the
(24:22):
practical steps to performing such a study to be very helpful. Finally,
I wish to mention to anyone interested that doctor Bonnsell
is a podcast host herself, as the host of the
in the Flow podcast, in which she speaks with important
luminaries like doctor Steve Lipschaltz and doctor Lori West, just
to name two of the more prominent figures she's had
on her show. As I said last week, I hope
(24:45):
you're leaving this week's podcast again enthused about the future
of our field with such important up and coming superstars
as doctor Bonsel. I'd once again like to thank you
for taking time out of her very busy week to
discuss the suit's work with us. Two conclud this replay
episode in which we speak with doctor Nehabansel from Mount Sinai.
We end with a wonderful duet from the opera La
(25:07):
Sonambula by Bellini. I'm playing this live excerpt from three
years ago because I noticed that the Metropolitan Opera in
the early fall will be highlighting this opera with the
very two singers that we're going to hear in this
live pirated recording from three years ago in Spain. Specifically,
we'll be hearing the great American soprano Nadine Sierra and
(25:28):
the wonderful Spanish tenor Xavier Aduaga. I hope you enjoyed
this Act one love duet, and I look forward to
seeing everybody next week. For a brand new episode.
Speaker 4 (26:04):
S S s SEP SEP s se P s s
(27:49):
H something to go by, to go, sim do se
(30:00):
and so if you coo
Speaker 2 (30:26):
So
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