Today I have about 15 minutes to talk.
I'm going to try and leave a minute or two
for questions at the end.
I'll spend some brief time about the history of the program here
at Boston Children's.
Then we'll go through an overview
of what the program is, who's followed, why they're followed.
And then, I'll talk about some of the outcomes
from the last six years.
And depending on time, I'll mention
a few things about resource utilization
and where we're going with the program.
So I think of the home monitoring program
as an early warning system for infants with single ventricle
anatomy who have been discharged home
between their first and second surgeries.
And we call this the interstage period.
So it's the time between the first stage surgery, which
we heard about this morning--
and that's typically at birth as you already know--
and the second stage surgery, which
is typically between four and six months of age.
So just a little bit about the background of the program here
at Children's--
in 2004, a sentinel paper came out
of Wisconsin that showed marked decrease
in interstage mortality with the home monitoring program.
So at that time, we had gotten really good
at taking care of these patients after their stage one surgery.
The operation had really improved over the previous 10,
15, 20 years.
We were doing quite well with post-operative care
in the hospital.
But we found we'd send these kids home,
and our mortality was still quite high.
So the group at Wisconsin thought,
maybe if we look at some physiological parameters,
specifically weights and saturations, we
could detect problems before they become true problems.
So the following year here at Children's, we
started with a stepwise implementation
of a home monitoring program.
And we started sending patients home with oximeters,
telling them to call their cardiologist if their sats were
less than 75%.
Fast forward four years, and that's
when we started the full home monitoring program which
included an oximeter, a scale to follow daily weights,
weekly calls from nurse practitioners.
That same year, Boston Children's
was a founding member of the National Pediatric Cardiology
Quality Improvement Collaborative.
And you'll hear more about that from Dr.
Brown in the next talk.
The collaborative is a group of about 50 cardiac programs
across the country.
And their goal has been to improve the care of the infant
during this interstage period.
With the NPCQIC and the home monitoring program development
in cardiac programs, HMP has really
become a standard of care for any facility
that is taking care of these single ventricle infants.
In 2012, we added a dedicated dietitian.
For those of you that know Erin Keenan,
she's our HMP dietitian.
And that is critical, as you'll see,
when we look at outcomes, because feeding and growth has
been a real--
one of the bigger issues with these patients.
So today, October 27, 2015, we've
had over 200 patients that have come through the HMP--
through the home monitoring program here at Children's.
And, I skipped an important piece, so sorry.
2009, prior to implementation, our interstage mortality
was 12%.
Today, it's 4%, after the institution of this program.
Yay, yes, that's very exciting.
So let's look at a little description
background of the program.
At Children's, we follow all infants
with single ventricle anatomy, including
all shunt-dependent infants.
So even if they haven't had arch work,
and they just have a shunt, such as patients
with PAIVS or Tricuspid Atresia, we
follow them in this whole monitoring program.
Other diagnoses, HLHS, of course,
because that was sort of the founding diagnosis--
not the founding diagnosis, but the patient population
that we started this with--
unbalanced canals, doublet inlet left ventricle, and then
a smattering of patients with heterotaxy syndrome.
And the question is, why are these patients monitored?
We know, from experience, if you are inpatient provider
or an outpatient provider, these are
the patients you hear the most about, that you're
worried about.
And the reason is that interstage infants
are at a risk for rapid deterioration when ill.
So you have a single V infant with a fever,
they often look very poor.
They don't handle a fever well.
We also monitor them closely so we can detect problems early,
before they become true problems.
And we had a patient--
I'll just call him John--
two weeks ago, three weeks ago.
And mom called the floor and said, I'm worried about him,
his sats are a little bit lower--
they were like 72%, 73%.
He usually runs higher, like 78%--
fussier, not eating as well.
And this is a common constellation of complaints.
And we actually had him come into the ED.
He was intubated by that night, went to the cath lab
the next day, and his BT shunt had been clotted.
So they dilated it.
We started him on Lovenox, sent him home.
And he is growing--
he's doing well at home, is continuing to grow,
and will come back in, in two to three weeks, for his stage 2.
So because we had given-- you know, and maybe some parents
would have brought their kid in it anyways,
but if you give them some parameters to call for,
we find that it helps so we can get at problems earlier.
The third reason is monitoring weight and nutrition patterns
so that we can optimize their growth.
We know, from some of the work that's
been done through NPCQIC, that the bigger the patients are,
the better they do at the second stage.
And finally, while this is not the only--
these are not the only parameters
that dictate when the second surgery is, oxygen saturations
and weight trends are part of the constellation of things
we look at when we're assessing readiness
for the second surgery.
So we do a lot of teaching with the families
before they leave home.
And we talk about--
we try to frame things as far as what
are the most common problems that you're going to see.
And we've broken them down into six groups--
changes in heart function, changes in cardiac rhythm,
infection, dehydration, narrowing
of the pulmonary shunt, which we saw with that patient I just
described.
And the most common one is poor weight gain and difficulty
feeding.
One unusual example of infection--
but kind of highlights why watching these kids at home
and giving them the scales and the oximeters are important--
is a patient who had low sats, came in, was transfused
because his hematocrit was low.
Sats improved.
We sent him back home.
And within a week, his sats were low again.
He was eating fine, was happy, not working hard to breathe,
color was good.
We still brought him in because he had low oxygen saturations.
And it turned out that he had a Babesiosis infection, which
is a parasite infection that comes from blood transfusions.
And so we were able to recognize that early.
And previously, you might have said, well,
his sats are a little bit lower.
But everything else is fine.
Let's just keep watching him.
But we have low threshold for anything
out of the range of normal--
our normal-- for these kids.
And so it's just another example of what a home monitoring
program can do for this patient population.
You've probably gathered this already,
but we monitor sats once a day.
Parents check the patient's sats at home.
And the goal is to maintain sats greater than 75%.
Parents also will weigh the baby once a day
and keep track of their feeding patterns.
Average weight gain for an infant
should be 20 to 30 grams per day or approximately 150 grams
per week.
And then we also do talk to the families
about signs and symptoms of those interstage problems I
just mentioned.
They are given a logbook.
And then they can keep track of the sats,
and weights, and feeding trends that way.
And they can also write any other comments or notes
that they observe on their child.
To bring it all together for the family,
we have a list of red flags that they're sent home with.
We tell them to put it in key spots on the refrigerator.
You know, if they have a grandparent watching the kid,
they send a copy with the grandparent.
And these are when we ask that the family calls us.
So oxygen saturation is less than 75%.
And that also includes things like working harder to breathe,
appearing more cyanotic, more agitated than usual, increased
vomiting, diarrhea, eating less over the previous 24 hours,
three poor feeds in a row.
And what I tell parents when we're teaching
them is that you're going to get to know
what your child's norm is.
But as a definition, we say a poor feed
means less than half the usual volume
and/or taking more than 30 minutes to finish the feed.
But honestly, once the family is really
taking care of their child, they have a sense
and they don't actually need this definition.
But it's a place to start.
We also ask them to call if there's
no weight gain in three days or two days of weight loss.
And the reason we differentiate between those two
is that, clinically, two days of weight loss
probably raises the concern that there's dehydration, which
is more of an acute problem, than no weight gain in three
days, which may just mean that we need to titrate volumes
or titrate calories.
Finally, the last one, worried that their baby just
does not seem right, seems like a very vague descriptor.
But parents know their babies very well.
And this is actually a very common complaint.
And we take it very seriously.
So often, that's the first thing that a baby does
is just doesn't seem right, doesn't seem like themselves.
And if you haven't heard this complaint from your parents
at the bedside, it's unusual.
I will say that.
And I think, as nurses, we have our own intuition and gut too.
And often, I'll have nurses come to me and say,
something's off with this kid.
And we take that very seriously.
So I think-- yes, we're at the outcomes section.
So we've had a little over 200 patients come through since we
started, it was November 2009, so "six-ish" years.
51%-- so about half have been patients with HLHS.
Most of the other ones have had other single ventricle anatomy.
And there's been a small smattering
of other high-risk anatomy.
We've had nine interstage deaths.
That's about 4% of our total group.
43 have had unplanned caths or operations.
And there have been 169 readmissions.
Now, some patients get readmitted multiple times.
People who know the frequent flyers can attest to that.
We've had about 40%, slightly shy of that,
who have had no readmissions.
And I think this is an important point when you're
teaching families, whether it's inpatient or outpatient,
that there's a good chance you're going to be readmitted.
And it doesn't mean that you're doing something wrong,
you're not taking care of your child.
It just means that you have a child that's
very-- that's a sick child.
And it puts things in perspective for parents.
I think a lot of families hope--
I think all families hope that they're not
going to be readmitted.
But if you normalize it, it helps them better
understand what's going on.
For growth and feeding outcomes, I
find these really interesting.
So a little over 2/3 actually meet
the goal, which is to gain 20 to 30 grams on average per day.
And I don't have this data here, but when
we look at it from year to year, it hasn't changed a whole lot.
It's always been sort of 67%, 68%, 71%, 70%.
And even with adding a dedicated dietitian,
this has still been a challenge to get some of these kids
to grow.
And while I don't have the numbers here,
I can say that there's--
of the 30% that haven't met that goal,
there's probably even smaller subset
that only gain maybe 5 grams per day, 7 grams per day.
And then the rest are kind of close to the 20 grams.
So there's this really small set of patients that just
struggle, struggle, struggle.
And probably most people can think of one or two examples
of those kids that they've taken care of that just don't grow.
And then, about a third of all our patients
end up with some kind of interstage tube feeding, which
is also helpful for family teaching.
And that can be a surgically placed G-tube,
J-tube, or just temporarily have an NG-tube at home.
And one more data point, that's not here,
actually, is that, I think--
I wrote this down--
about 2/3 of the patients that have some interstage tube
feeding actually still don't meet the weight gain goal,
which means there's something else going on in that kid
that we're not getting them to grow.
And that's a big question that people are looking at.
OK, so once a kid-- this is the other piece of outcomes--
when a kid finishes the interstage period,
we look at everything that has happened during that time.
We look at admissions--
ED admissions, hospital admissions.
We look at all the weekly calls from the nurse practitioners
and the dietitian to look at what the flags have been.
And the term flag and breach, they're
a little bit muddy because we use them
in several different contexts.
But in this interstage review, we go through
and we separate everything out into four categories.
So O2 saturation, did they drop below 75%--
and for some of these patients we actually also look at
are they higher than 95%.
GI issues include a whole host of things.
So decreased PO intake, ongoing issues
with reflux symptoms, not gaining weight
the way we want them to.
Intercurrent illnesses are the typical URI, UTI,
the occasional endocarditis, and even
that Babesiosis infection that we saw that one time.
And then there's a few other breaches or flags
that we've observed over time.
So the whole point of this slide, in my mind,
is how many issues we have with GI.
You know that is over half of the reason
that patients are calling or that the struggles
that the patients have at home.
And it just speaks to this whole host of other issues
that are part of this disease.