Hello, and welcome to the Complex Care Journal Club
Podcast. My name is Emily Goodwin. I'm a pediatrician in
complex care at the Beacon Program at Children's Mercy
Kansas City and your host for this episode. I am one of the
course directors for this podcast series, where we seek to
discuss emerging evidence in the care of children with medical
complexity and its implications for practice. I am delighted to
have Dr. Nancy Murphy from the University of Utah School of
Medicine joining me today. She is the senior author of the
article titled "High Parental Concern in Children With Medical
Complexity: An Early Indicator of Illness," published in
Hospital Pediatrics in February 2023. Dr. Murphy, thank you so
much for being here.
Thank you. It's a pleasure to be here.
First, I would like to ask you to share a little bit about how
your team developed this research project, if that's
okay? I see that your group previously published information
for designing home monitoring systems for children with
medical complexity in 2019, in the International Journal of
Medical Informatics, and then in Hospital Pediatrics in 2021 on
the feasibility trial for this app, MyChildCMC. I saw that the
app allows parents to record their vital signs, temperature,
heart rate, respiratory rate, oximetry — but also symptoms;
pain or seizures, intake, output, mental status, and
oxygen use. What really struck me is it also allowed parents to
rate their level of concern about their child's health.
Taking a step back further, I'm wondering what you were seeing
or your study team was seeing in practice, or what led you to
consider the use of an app that includes rating level of
parental concern?
Thank you for the opportunity to tell the big story. And I
actually appreciate that framework, because just talking
about this paper doesn't really paint the whole picture. So this
all came about in the late '17 - '18, where we really focusing
hard on value based care. The idea of children with medical
complexity was coming up, we were starting to define the
population, there was an increasing amount of technology
that was available for kids to be at home, and then there was
this big shift from you're cared for in the hospital, to you're
cared for at home, and the responsibility on parents became
bigger and bigger. And so we were trying to figure out how do
we best support families at home? What do they need? How do
they measure their progress? And how do they know when to reach
out to their care team when they need help? I'm gonna say that
the perhaps arrogant assumption we made is that if parents
called us when their kids were sick, we could divert them from
coming to the emergency room, we could reduce hospitalizations,
we could change courses of care. And perhaps in some levels,
that's true. But really, what I think this is is a study in
parent provider partnership, and how do we team up with families
to really care for these kids across the continuum? So that's
the background. Where did we begin? We started out with, we
want to start monitoring kids at home. And not knowing how to do
that, nor did we know whether parents were going to be willing
to do it, we convened some focus groups. And I'm gonna say, of
all three of these papers, the funnest part of this project was
the focus groups, because I am always humbled by the simplicity
of lessons that parents tell us that is so different than what
we see when we're in our hospitals and clinics. So we
asked parents, "Would you be interested in an app that helps
you monitor your child's symptoms at home?" And there was
an overwhelming, "Yes, absolutely, we would like to do
that." And then as the story evolved, the take was, "We will
gladly monitor our patients symptoms at home. We kind of do
it anyway. We have spiral bound notebooks, and we have nurses,
and we have diaries and journals and sticky notes. But if you
want to formalize this in an app we will do it, only if there's
somebody on the receiving end of the app." And of course, we're
like, "Oh, hmm. That's a great ask, and I don't know if we can
deliver on that quite upfront." So that was one of our first
challenges, and what we agreed to do is develop the content of
the app, and then figure out how to operationalize it later. But
that was the biggest, strongest ask in the room so that parents
could be connected with their familiar caregivers. And then as
we developed the content of the app, this brings us now to our
current paper, which is parental concern. There was concern from
parents about reporting concern for fear that that might be
misconstrued as, "I'm not confident or capable or
comfortable in managing my child's care at home." So the
response was, "Don't ask me about my concern. I want you to
focus on my child." And so we kind of marginalized that piece
of the initial effort. Then we did a feasibility trial. And the
way we did that was we took kids with medical complexity to our
standard definition, three organ systems involved, tech
dependencies, frequent hospitalizations, and we
enrolled them during an acute care hospitalization. So we
identified about 50 families. And then we randomized them to
usual care, or 50 families who are going to participate in
trying our drafted pilot app. And we did all the things that
you mentioned; measuring vital signs. And we added this level,
we took worry out, and we changed it to level of concern.
How concerned is that parent about their child's well being
today? And that other paper showed that it is feasible,
parents are able to do it, they are engaged with it. It is
informative information. But the third paper and the one that
we're here to discuss today, is parental concern, and what does
that tell us? And in that study, we dug in to see if parental
concern could in essence, be interpreted as a vital sign.
When parents are saying they're concerned, what are they really
saying? And that's where we dug into the data a bit more to
figure out what that means.
Great, I love hearing that bigger picture of the story of
how that was developed, and also how your study team adapted
based off the input in partnership with families in the
development of this process. So what did your study team find?
We found pretty much what we expected. When a parent calls
and says, "I am concerned." And some parents are able to say,
"Their [O2] sats are down, their oxygen is up, they're vomiting,
their feeding is not tolerated, they're not sleeping," whatever
it may be. Some parents are very clear in summarizing their
objective assessments. Others like, "Something's wrong, it's
not right I..." and that gut feeling can still be
misinterpreted by a busy clinician, as a worried mom who
just needs reassurances. But what we found was the level of
parental concern, absolutely was associated with four key
findings. And those findings were: my child has increased
pain, my child has an increased oxygen requirement, my child has
decreased feeding tolerance or is taking less, and my child's
mental status is different, irritable, fussy, lethargic, not
their usual self. So parental concern is a big gestalt picture
of something is wrong. It's a pretty reliable indicator, in a
child with medical complexity, that something is wrong.
I love that. It really puts an objective finding, like you
said, to that, "Spidey-Sense," that parents have that
something's wrong, or they're not quite able to put their
finger on it, so this is really innovative and I really
appreciate you explaining that. You mentioned earlier that some
challenges of using an app might include giving real time
feedback or responding to what's in there. Can you tell us about
opportunities and challenges that you identified while
developing and conducting your study?
I would say our greatest challenge was getting our
providers on board with what the parents are telling us, right?
So much of our research is driven by the provider team, the
research team, and less so by the parents. Our parents are the
participants in this study, this wasn't really a study of the
kids at all. And the parents were very clear about, "This app
is not an app for us as much as it is an app for you." You as
the provider team, and asking us to say if they're going to go
through the exercise of taking their sticky notes and their
journals, and entering into this app, which they'll gladly do,
they want to make sure that there's somebody on the
receiving end. Our minds immediately went to, "What? we
need 24 hour telemetry? That's not what we're talking about."
And so we came to some common ground. We asked parents to
collect data on a daily basis. And they said, "You know, if my
kid is having a typical day, I'm going to collect data for three
to five days," I think we landed on three, and "I'm going to show
you what a typical day looks like. Now, please don't ask me
to record every single typical day, because it's exactly the
same as yesterday, and it'll be the same tomorrow, right?" It
made no sense. And they were right. And then they said, "When
we see that our kid is starting to change, we'll start recording
more frequently." And that was a really clear moment to us that
our parents know better than we do what is a typical day. And
then we went on to have them start recording when their child
was getting sick. And what we found is that one to three days
prior to an acute illness, things were starting to look
different, even in ways that may not be measurable, but they were
different. And that gave us an opportunity to intervene. So
parents tell us, more than ever, they tell us what they need,
what works and have this sense of, "I can manage it when my
child is different until I reach a point at which I need help.
And when I get to that point of needing help, I hope you guys
are quick and available in helping us."
What do you think are the implications for clinical
practice? So specifically, what do you recommend for members of
the interprofessional care team for children with medical
complexity, based off your findings?
I would love to have this be a reminder to everybody on the
care team that a parent of a child with medical complexity
who calls with an increased level of concern, that we stop
and at a minimum, ask some of those questions. They might not
be giving us the objective data straight up, but if we ask them,
"What's going on? What are the [O2] sats? Is he feeding? What
is his mood, behavior, temperament, energy? Is your
child in pain?" and start to dig in a little bit. We can guide
the parents in understanding what's going on with the kids,
we can guide our clinicians in sorting out what may be
happening and how we might be able to help from home.
Were there any concerns for equity for access and use of
this app? Whether it be someone's digital health
literacy, or language barriers, or barriers — for time, as you
mentioned, was a concern with it. Were there any other
barriers like that with using this app?
Our sample size was small. So we only had 25 people enrolled in
this, and our demographic in the state of Utah is a bit
homogeneous, and so we didn't get a real diverse sampling. We
also did not have the resources to have a Spanish version of the
app. That was pilot data, we have a lot more to learn. The
families that were enrolled, spoke English, had phones, and
had the knowledge on how to navigate these apps fairly well.
Our next step is to look at a multicentered trial, to get a
bigger sampling of a more diverse population, and families
of a greater diversity of needs and resources to really
understand how this is going to work.
Nancy, I wonder if you could tell me a little bit about your
research team and how you put it together?
I so enjoyed working with this group of providers and grant
writing, analytics, statistics people who know how to interpret
data so very well. Our app was part of a tech development
project and is still being looked at in that tech sector.
So I have to say that one of the strengths of our research team
is the collaboration of lots of different brains and talents
from our technology people to Dr. Nkoy, who is a proficient
and prolific grant writer. And then we had a hospitalist, and
Xiaoming Sheng is a statistician analyst. So really putting
together a group of people — I never would have met these
people otherwise. We had to hunt each other out within the
organization and get out of our own care teams. So, having the
expertise of so many people was key.
That's really a great message too for future researchers
thinking about, not just within their own field, but reaching
across different disciplines, and of course, partnering with
families in research design. So essential.
We had the focus group as our Parent Advisory Panel to this
study, and right now that is no longer in place. I think that's
an essential piece to any of our research projects around
families with children with medical complexity is to have a
family advisor or two looking over our shoulders and reminding
us to keep it real.
Are there any other important next steps from your work or
lessons learned that you'd like to share with researchers in the
field or clinicians?
An interesting thing that came up for us is that when families
were saying, "We're gonna monitor our kids on this app,
and we want you to interpret it with us." They were saying "You,
Dr. Goodwin," right? They said, "You know my child." And we work
hard to have a team based system of care, because Dr. Goodwin
cannot be on call forever and ever. And so trying to build
that parent provider relationship where your trusted
team will be involved in your child's care. But your trusted
team may not always be your preferred provider or your
primary provider, it's part of the team. So that's an exercise
in building trust. And I think that's where our systems of
documentation and our electronic records, and our access
remotely, is so critical so that as providers, we can call these
families back and say, "I reviewed Johnny's chart and I
can see he is six years old with a diagnosis of — and often has
trouble with such and such. What's going on today?" To build
that trust and keep that rapport going.
So I saw in the discussion that you mentioned for next steps,
the final iteration of the app may not include assessment of
the parental concern. I was curious if you could say, what
will help in making that decision?
Parental concern is important. Just as it is for like, how
worried are you if this kid is going to be medically fragile,
and this is going to escalate? We could frame it into, what
direction do you think this is heading? And how fast do you
think your child is changing. At this point after our
feasibility, our pilot and our qualitative assessments however,
I really think parents have come to trust their ability to say
level of concern. Not worry. I wouldn't use the word worry,
because that implies that you're emotionally wrapped up, but, "I
am concerned." And I think that's something that we
absolutely can continue in it.
So what are the messages for patients and families from your
study?
I think there was a mutual, Aha. Such as, "My provider is
not always available." I think they forget when they call after
hours that we are not in hospital. And so that was a
reminder, I think to them of the level of investment and
commitment to their child's care that their care team offers. And
mutual respect, what we're doing is hard, what they are doing is
crazy hard, and we're all trying to do this together.
It seems too just from your data that you collected, that
families should really trust that gut feeling when they have
a concern and partner with the team.
Absolutely. They should trust their gut feeling and as
providers we should hear when they're saying their gut is
twitching, something is happening.
Anything else you'd like to share with listeners?
I invite everyone to join in, in this work. Our populations are
unique, our systems are unique. All of these conditions that
lump into the world of children with medical complexity can
really layer out very simply into a common set of symptoms
and conditions that we manage, regardless of the etiology. And
so I would encourage our provider team, our broader
community stakeholders and families to keep us broad in our
thinking and bright eyed in terms of opportunities, because
there's so many.
Thank you so much for your time, Nancy and thank you to you and
your team for advancing the field of complex care.
It's a pleasure to be here today. Thank you.
Thanks for listening to the Complex Care Journal Club
Podcast. We aim to highlight research that has the potential
to be practice changing, that values patient and family
engagement, is relevant across disciplines and diagnoses, and
uses high quality or novel research methods. We invite you
to join the conversation by suggesting an article that you
would like to see discussed in this podcast using the form
provided on the OPENPediatrics YouTube channel. Thank you for
joining us.