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CNOC: Solidifying the neurodevelopmental care, follow-up, and outcomes of children with CHD
By David K. Werho, MD @DWerho
Over the past year, the Cardiac Neurodevelopmental Outcome Collaborative (CNOC) has been prolific. After years of planning, coordination, and collaborative work, the many clinicians and experts have been able to share numerous articles related to their mission, which is “to determine and implement best practices of neurodevelopmental services for every individual with pediatric and congenital heart disease and their families through clinical, quality improvement, and research initiatives.”
In late 2020, CNOC published five articles in Cardiology in the Young. This first group of articles described the development and purpose of CNOC and included foundational best practice recommendations for neurodevelopmental evaluation of children with congenital heart disease.
Now, CNOC has 4 more articles to share with the community of physicians who care for CHD patients. These include research agendas and recommendations regarding characterizing and optimizing neurodevelopmental and psychological outcomes in CHD patients as well as parental and family mental health for families impacted by CHD. Needless to say, these publications will form the foundation of neurodevelopmental research and follow-up for CHD patients for many years to come.
I had the opportunity to sit down with three of the many experts who are responsible for the success of CNOC to ask them questions and reflect on their work. Dr. Bradley Marino, Dr. Erica Sood, and Dr. Caren Goldberg.
Here’s a bit of our conversation:
David: So just to start off, can you briefly talk about your vision with CNOC and the first group of papers?
Dr. Brad Marino: Caren and I were the founding steering committee members for CNOC. Before it became incorporated in 2015, we had three working groups. Those three national working groups - one was coming up with an evaluation protocol for children that were from birth to five years; one that was for children who were kindergarten or age five to six through the end of high school - school aged kids; the third group was a group that wanted to start looking at cross institutional clinical and research opportunities. What came out of those three initiatives were three of the first batch of papers: One being the birth to five evaluation paper, the second being the school age 6-18 paper, and then Tom Miller's paper which was a survey of the existing programs at the time, which now there are more than 43 programs.
Having these articles finally get out was a real milestone. I think it shows the durability and the forward thinking and the vision of CNOC in that people never thought at first that all these different stakeholders could work together on this, and we've done it, and that goes to our membership. They've done an amazing job rallying around this opportunity. Without our membership which now is more than 1000 people across North America and Europe and our 43 sites, those papers wouldn't be possible.
Dr. Caren Goldberg: Yes, yes. I think the only thing I would add to that is just the emphasis on collaboration. I think that that has been absolutely 100% what makes this all tick and having cardiologists, psychologists, neuropsychologists, nurses, therapists, educators, patients, and caregivers all figuring out that this is an important topic and then working together across sites and talking together on a regular basis, "This is what we do. Let's learn from each other. Let's figure out how we can talk about these things in a way that it helps other people to build their programs, and help all of us to build the data set", but I just think the collaboration has been a major part of the story, a major emphasis.
Brad: I want to pick up on Caren's last comment in terms of the database. These evaluation protocols allowed CNOC to create our registry, which is both a clinical and a quality improvement data source, as well as research, obviously, with so many centers contributing. It really has been an incredible team effort.
David: Can you talk about the research part and what you’re doing next?
Dr. Erica Sood: Yes, CNOC applied in partnership with Lurie Children's Hospital for an R13 grant, which is a conference grant we were awarded from NHLBI. This funding really initiated a two year-long initiative that started with us identifying what were the key domains that we really need to focus on with regards to research over the next decade in cardiac neurodevelopment. We identified those key domains and then we put together a group of 65 international experts split across these six working groups that all corresponded with key domains of neurodevelopment. We brought everybody together to Kansas City to meet for two days. We also had health disparities experts, we had patients and parents, quality improvement experts, and really all worked together to define the research agenda for the next decade in cardiac neurodevelopment. Each working group has a paper that defines the agenda, significant gaps in knowledge, and critical questions that need to be answered soon but in the next decade to move the field forward. Those four papers will be coming out on June 10, 2021.
David: Wow! It sounds like there's just been tons of collaboration, and probably none of this would have been possible without that keyword collaboration.
Erica: One thing that we probably didn't emphasize is also international collaboration. I know you mentioned that we have sites across North America and Europe, but I think even from the beginning with the initial working groups putting together the protocols, we had to think about what could be distributed across multiple countries in multiple languages. I think that was a unique challenge that I think was achieved. Finally, the one other thing I would say about what's coming next from a publication standpoint is, now, we really do have some data in our data registry. We're starting to do some analyses of that data, and we'll learn some things related to who's coming back for follow-up and what they look like. Obviously, it's going to open up a whole realm of studies from the CNOC data registry as well as partnering with other cardiac networks as well.
David: My next question is kind of related to that, and I'm sure this is probably part of your next group of papers as far as questions that need to be answered. I really enjoyed reading about the differences between all the different neurodevelopmental programs, and obviously, understanding what our new standard of care should be. I know that in the neonatal or the preschool age paper, you also mentioned a little bit about community advocacy and making sure that there are resources so that we can actually have neurodevelopmental care and early intervention and that kind of stuff to actually make a difference. I think, from my standpoint as a cardiac intensivist, the thing that is the big unanswered question for me, as far as how can this make a difference is how can we understand what we're doing in the ICU and how it translates to different neurodevelopmental outcomes? And so, my question related to that is, what timeframe do you think you'll have enough data to even begin to answer those kinds of questions?
Caren: Well, I think it is going to take a little time for us to be really secure with our answers, but I think the future is bright for us to be able to answer questions like that. The reality is, we started our registry in May of 2019. And so, it was only nine and a half months or so before COVID hit. And then, we had some months where no one was having in-person evaluations. I think it's just going to take a little while to accrue enough reliable information to be able to say.
Erica: The other thing that I think we need to think about it with regards to CNOC. But also, in collaboration with PC4 and PAC3 is that there are going to be variables that are probably important that aren't measured as of yet; some of the developmental care variables and how often are these children being held; when are they being held; how are they being positioned; how involved are the parents; how much do we support the parents? There's a lot of factors there. And so, how that can be measured through these registries? Right now, we're not collecting that information, but that doesn't mean that there's not a point in the future where we might be able to get into some of those developmental care variables with our neurodevelopmental outcomes data and correlate. We have many investigators within CNOC that are experts in patient developmental care. We started special interest groups several months ago. Our first special interest group is actually a group that was formed in this grassroots effort outside of CNOC, and then we kind of brought them in and they joined CNOC. Many of the members were also CNOC members, but they're very focused on neuroprotective care for newborns in the cardiac ICU. They're doing a lot of work around that. I think there's many directions we can go in, but I agree with Caren that we're probably not going to be able to answer that question tomorrow with our data.
David: Sure. One of the things when you have a lot of high quality data is that it begets wanting to have even more high quality data, so I totally get that. I guess, one thing I would like to ask related to the last question is - do you have any anecdotes or patient stories about how the collaborative work that you've done so far really has translated into improving patient lives or outcomes?
Erica: I'm sure all of us can contribute to this question. I would say that every individual program has probably hundreds of stories of how developmental follow up improved their patients’ lives or helped to support families and parents. I can think of so many examples, so it's hard to know. Let's focus on the individual program. Helping to advocate for additional services in school, helping the kids to get IEPs so that they can get the appropriate support, helping to support the parents with coping with this and getting families into therapy and kids into therapy-- when I say therapy, I mean, all different types of therapy, but also psychological therapy-- helping to identify autism way before it would have been identified otherwise, having families know who to call if they have a concern that they otherwise would have had to wait on waitlist. They would have had to get to a level of concern that is so much higher to be able to navigate the mental health system. I always think about who actually gets to psychology outside of our developmental programs, and it takes so much effort. And so, we can just be there and that contact person for them if they have any questions or concerns. I could go on and on about that, but that's at the individual program level. I think what CNOC has done is really made it so that these individual programs are seen as necessary. We have sites that are saying, "We want to join CNOC, and therefore we're setting up a program to do that. Can you connect us with other professionals who have set up programs?" We do a lot of that as well in terms of networking and helping to support. I think that CNOC itself has actually resulted in many more programs being formed, which then individual programs can then help the patients that they serve. That's what I would say, but I'm sure everyone else has other things to say.
Caren: I think that that's a really good point. I think that evidence of how much it matters is the participation by parents in our scientific sessions. People are really driven to have their voices heard, tell their stories of how it matters. There was one quote, at last year’s scientific sessions in Toronto, I know that we all remember it well; it was a quote from a parent that someone had shared, saying, "On a day to day basis, the psychosocial or mental health impact on my child is much greater than their congenital heart disease.” That's what was impacting their lives. Having a group of people come together that are trying to improve that situation for all of our patients with congenital heart disease, I think is really so appreciated. It's really just the big picture that helps so many.
Brad: Dave, I could tell you thousands of stories as well. Parents who get important developmental services, and we're changing kids’ lives; we're changing family's lives. I think from a macro perspective, we've changed the field. I think what I'm really, really proud of on the individual impact we're having on patient families, which of course, is the most important thing, is the fact that we put programs together that lose money and we provide services in States where Medicaid pays $0 for neuropsych testing and almost nothing for psychological services. We, as a set of leaders nationally with all these programs have basically gone to the leaders of our institutions and said, "It's not enough for us to operate on the patients; it's not enough for us to save their lives. We also want them to have the best quality of life possible." If you look at our North Star for our vision or mission statement, it concludes with providing the best quality of life for every patient. We modified that recently from patients to every patient and their families. We know that Caren should speak to this but she gave really one of the most amazing lectures we have ever heard when she got the Newburger-Bellinger award this past year on disparities in cardiovascular outcomes and disparities in access to neurodevelopmental support services in our pediatric cardiovascular population. CNOC is trying to bridge that diversity gap. We're trying to make it that no matter who you are, where you live, what your insurance is, that you have access to the services; you have access to this kind of care. When you look at it from an advocacy standpoint, look at it from a programmatic standpoint, look at individual patient standpoint, I think our teams have really impacted the field and in our community, and I'm very proud of those leaders nationally.
David: All right. That is fantastic. Last question: Tell me what your number one goal is for CNOC in the next year after COVID is done.
Erica: Our strategic plan really comes into effect here. I think it's output. It's showing that we can use the database that we've built and collaborated, of course, with other metrics, and many others to build. All of the data that every site has worked so hard to put in to actually advance the science and do something that researchers have not done before, which is to really describe outcomes across our practices, across almost 50 centers. That's one thing.
Caren: I think that's big and important, and I think to use those data in our findings to advocate so that resources are easier to access for all of our patients. Like Brad said, so everyone can get the care that they need, including developmental follow up, and physical and mental health therapies, whatever it is that is pertinent to that patient.
Erica: I would say to continue to strengthen our collaboration with parent and patient groups.
Brad: I would say, expand our collaborations into the adult congenital space, and specifically, continue to grow our interactions and our collaborations with other European and international colleagues.
Caren: That's on a small list of goals. I think, probably, David, it is important to know that we put together a strategic plan, actually, that will cover our next five years. We're pretty proud of what it looks like and we’re excited to share it with this next group of articles.
David: Thank you all for this amazing work and for taking the time to speak with me and for sharing your work with the readers of Cardiology in the Young!