Aug 4, 2020
Nidhy P. Varghese, MD is an Assistant Professor of Pediatrics and the Medical Director of the pediatric pulmonary hypertension program from Texas Children's Hospital. In this episode, Dr. Varghese discusses comprehensive care centers and centers of excellence in #pulmonaryhypertension and how that can be helpful for your child.
Hi. I am Nidhy Varghese. I am a pediatric pulmonologist and I'm
the medical director of the pediatric pulmonary hypertension
program at Texas Children's Hospital in Houston, Texas.
Today, I'm going to talk about comprehensive care centers and
centers of excellence in pulmonary hypertension and how that can be
helpful for your child.
I don't necessarily mean comprehensive care centers as defined by
the Pulmonary Hypertension Association or centers of expertise as
defined by the PPHNet, two organizations with which I'm affiliated,
but I wanted to concentrate more on the importance of seeking out
expert care at expert centers for your child's pulmonary
hypertension.
What distinguishes a center as being a center with expertise, a
specialty care center for pulmonary hypertension, is the
infrastructure that's present. That does not mean just the people
who are there, the physicians, but it means also the team and the
resources that they have to offer the patient. The team has nursing
support that is familiar with pulmonary hypertension, pharmacy
support that is well versed with the various treatments that are
offered or available pulmonary hypertension, advanced practice
providers, exercise specialists or physical therapists. You have
dieticians, echocardiographers who know how to do an echo for
evaluation of the right-heart, cardiologists, pulmonologists, et
cetera. It is a whole cadre of people who work together for the
child, keeping pulmonary hypertension at the forefront of that and
bringing a multidisciplinary or in other words, comprehensive
evaluation of the child that can then lead to more emphasis on
looking at long-term outcomes, on interventions in a timely fashion
and hopefully really supporting quality of life.
The centers where expertise is located are going to be peppered
throughout the country, but that doesn't mean that you can't get
care with your local physician or local cardiologist or
pulmonologist. However, you can certainly get consultation from
some of these experts centers. There are center maps available on
the PHA or on the PPHNet website, and they will show you where some
of these expertise centers are located.
The importance of a conversation with a PH expert or a PH
specialist really can't be overstated. They can really help the
local physician care for your child and be aware of other
opportunities for newer medications, newer combinations, in
addition to getting them evaluated for intervention such as atrial
septostomy or a Potts shunt or a lung transplant. These are things
that are going to be offered more at the experts centers. Then at a
smaller institution or an institution that has less experience with
pulmonary hypertension.
To be regarded as a center of excellence, you have to build it.
When I first started at Texas Children's, we had a pulmonary
hypertension program and that program over time grew and as it grew
we added infrastructure of nursing coordination, of nursing
support, advanced practice providers, increasing number of
physicians. We added in exercise specialists, nutritionists,
pharmacists and it created a team that is dedicated to pulmonary
hypertension. We're constantly evaluating our own practice. We're
doing that through meetings on a regular basis and learning from
other people in the country.
We follow a large number of children. There is some expertise
that comes to us with experience and we follow some of the sickest
children, because we have a lung transplant program affiliated with
us. That also gives us additional experience. For those reasons,
and the fact that the program has been around for some time now, we
are considered a center with significant experience and expertise
in pediatric pulmonary hypertension.
When kids are old enough to transition out and that typically
happens sometime between the ages of 18 and 25, when kids reach
adulthood and we are contemplating options coming from Texas
Children's, our preference is to transition children or transition
these young adults to other centers where there is significant
experience to continue managing them with the cutting edge of
therapeutic technology, as well as any interventions that they may
need down the line. We seek out other centers with expertise and
experience to manage these young adults.
One of the most exciting times I think for our program was when we added a nurse coordinator. That really, I think, marked our transition from a program that was taking care of these kids to a program that was paving the way for these kids. The addition of our nurse coordinator enabled us to seek out medication opportunities for children in a way that we could not before and also to care for patients in a more in depth way of communicating with them, advocating for them and making sure that we were really giving them the best therapy that we possibly could. Having that nurse coordinator added really elevated the program and helped shape it to become what it is today. From that moment on, it really has been very exciting at Texas Children's. We've been adding more physicians, adding more support and really building out this infrastructure and our program has grown dramatically.
I think it's been extremely humbling for us in the program to
see the growth and to care for every one of these patients. We are
firmly committed to continuing to build our program out with more
resources to continue the same standard of excellence for every
additional patient who comes to us. A new diagnosis is hard.
Getting a diagnosis of a disease is always challenging. When that
disease is pulmonary hypertension, there are so many other layers
to it.
When I am faced with a new family and we are talking about
pulmonary hypertension, I try to do this in stages. So, talking
about what is pulmonary hypertension, drawing pictures of what that
means for the heart, what is happening in the lungs, and then
talking about what that means ultimately for the family's child and
the life that this child can expect. But then really trying to
bring it back to there are so many therapies that we can offer
now.
20 years ago, the therapy choices were limited and therapy choices have been increasing and we've added so many in the past couple of years that kids have options now. With those options, we really do see improvement in quality of life, at least for many of these children. I try to maintain some hope while being still realistic and cautious because this is pulmonary hypertension we're talking about still. But I think that families when they come, they need to have the information that they need to understand that as the PH team, we have some hope and we are hopeful that these medications will work. We are hopeful that there will be more medication options out there that might suit your child better. Because of all this hope, we all continue to do what we do to treat pulmonary hypertension patients and we continue to advocate for our patients.
I want to share that hope that I have for my patients with these families who are taking care of their children. That's one of the big things I try to have families walk away with, but a new diagnosis is always challenging and getting that information I think is crucial. This is one of the things that I struggle with for these families is making sure that they get good information. So many of the families are looking on Google or perhaps talking to other families using social media, et cetera. By the time they get to our center, they already have some preconceived notions. They've already learned about some things and it's not always good what they've learned or what they've heard and that can sometimes be very damaging for the family. Again, I think really getting the diagnosis and getting that discussion of what pulmonary hypertension means.
Having that conversation with someone who has the experience to take pulmonary hypertension along the spectrum. That means diagnosis, complication, death. You're talking to somebody who knows what that looks like, knows what they can or cannot do and has a good idea of a game plan to move forward.
I find it really helps when families are talking to somebody who has very little experience with pulmonary hypertension. That person really is not going to be able to paint them a picture that's as comprehensive as can be painted in a center with expertise.
The key here is not to say that pulmonary hypertension care
cannot happen anywhere outside of a an expert center, but that
expert centers are here. We are peppered throughout the United
States and North America, and we are here to serve as your primary
site for your child or as a consulting site for your child.
The thing to take away here is that specialty centers for pulmonary
hypertension or these expert referral centers for pulmonary
hypertension, we are here to support you, to support your local
physician, to support your child most importantly. We can be a
resource and we should be a resource for anyone who is not as
familiar with pulmonary hypertension, who doesn't have the
expertise. We certainly want to partner with people and also to
serve ultimately as destinations for these children, especially as
their pulmonary hypertension worsens.
I'm Nidhy Varghese, and I'm aware that my patients are rare.
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