Ep. 86: The Roadmap Project (Encore Presentation)

The Roadmap Project started in 2017 as a simple request from three parents of children with chronic conditions to the American Board of Pediatrics: Create for us a roadmap to improve the emotional health of our children. 

Since that time, The Roadmap Project has become a national effort that seeks to do this by: 

• Raising awareness among patients, families, and clinical teams to validate, assess, and address emotional stress during routine care;
• Building confidence and capability among clinical teams to assess and address emotional health needs; 
• Helping patients and families feel safe sharing emotional health concerns; and 
• Providing resources, connections, and strategies to patients, families, and clinical teams.

In this encore presentation of the Well Beyond Medicine podcast, we hear from the team implementing the Roadmap Project and get an update on its current status.

Guests:
Erica Sood, PhD, Pediatric Psychologist, Director of Nemours Children's Cardiac Learning & Early Development Program, Nemours Children's Health, Delaware
Jill Plevinsky, PhD, Pediatric Psychologist, Children's Hospital of Philadelphia
Carole Lannon, MD, MPH, Pediatrician, Senior Faculty Lead, Learning Networks Core, Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital

Host/Producer: Carol Vassar

Views expressed by guests do not necessarily reflect the views of the host or management.

Subscribe, review or let your voice be heard at NemoursWellBeyond.org.

Transcript

Carol Vassar, host/producer: (MUSIC) Welcome to Well Beyond Medicine, the Nemours Children's Health Podcast. Each week we'll explore anything and everything related to the 80% of child health impacts that occur outside the doctor's office. I'm your host, Carol Vassar, and now that you are here, let's go. Let's go, oh, oh. Well beyond medicine! (MUSIC ENDS).

The Roadmap Project started in 2017 as a simple request from three parents of children with chronic conditions to the American Board of Pediatrics: Create for us a roadmap to improve the emotional health of our children. 

Since that time, The Roadmap Project has become a national effort that seeks to do this by Raising awareness among patients, families, and clinical teams to validate, assess, and address emotional stress during routine care, building confidence and capability among clinical teams to assess and address emotional health needs, helping patients and families feel safe sharing emotional health concerns, and providing resources, connections, and strategies to patients, families, and clinical teams.

In this encore presentation of the Nemours Well Beyond Medicine podcast recorded onsite at the Pediatric Academic Societies Meeting in Washington DC in May 2023, we sat down with pediatric psychologist Dr. Erica Sood from Nemours Children's Health, pediatric psychologist Dr. Jill Plevinsky from the Children's Hospital of Philadelphia, and pediatrician Carole Lannon from Cincinnati Children's Medical Center, to learn more about The Roadmap Project. Here’s Dr. Carole Lannon:

Carole Lannon, MD, MPH, Cincinnati Children's: The Roadmap Project aims to improve the emotional health of children and adolescents with chronic conditions and their families in a proactive, preventive way, and to ensure that emotional health is addressed reliably and equitably at all clinical encounters.

I think it would be important to state that this [00:02:00] grew out of a request by patients and families at a meeting at the American Board of Pediatrics that focused much on mental health and it, it came out that parents said, we have children with chronic medical conditions. We've had excellent care for their physical health needs, but no one has really addressed their emotional health needs. And when one parent said that, several people around the room said, that's been our experience as well. And they asked the president of the Board of Pediatrics to chart a project, and they said, if you do this, you can improve the roadmap for children with chronic conditions and their families. So that's how this began several years ago.

 Carol Vassar, host/producer: How long ago was that? 

 Carole Lannon, MD, MPH, Cincinnati Children's: It was probably about six years ago that the board began to fund this project. I was asked to work with this and [00:03:00] work on it. And I worked with patients, families, pediatricians, psychologists, to really understand the issue, develop what were strategies, and begin to move forward on making a difference.

Carol Vassar, host/producer: So, Dr. Sood, I'm gonna turn to you. Tell us what some of the resources are that are available through the Roadmap project. 

Erica Sood, PhD, Nemours Children's Health: So one of the resources is called "Normalize, Ask, Pause, Connect," and this was developed by myself and several other psychologists to provide clinicians who do not have specialized mental health training with a straightforward clinical approach to initiate conversations about emotional health with children, adolescents, and their families during clinical encounters. And so this involves normalizing that emotional difficulties are common and expected in many situations when a child has a chronic condition. So we start this conversation by saying something like, You know, I hear from other families that it's really common [00:04:00] to have to grieve the loss of the idea of the healthy child. Or I hear from other patients that it can be really difficult to be in the hospital and it's common to feel anxious or depressed. We then ask how the patient or family is doing using brief open-ended questions. We pause to make time for a response and to communicate that. We really wanna hear the answer.

You know, we're making eye contact, ideally sitting down not charting while asking these questions. And then we connect, you know, we make personal connections with the patient or family, letting them know that we heard them and thank them for sharing. We may connect them with resources that they have available, you know, already within their family or their support system, or peer-to-peer supports or connect them with a mental health professional or social worker.

Carol Vassar, host/producer: This seems like pretty common sense information to me. Is it is it outlined somewhere or are some people just not aware that these resources are [00:05:00] available, even just looking around them through their clinicians or through their families? 

Erica Sood, PhD, Nemours Children's Health: So "Normalize, Ask, Pause, Connect" is outlined on the American Board of Pediatrics website 

Carole Lannon, MD, MPH, Cincinnati Children's: and on the roadmap website. And I will say that Erica's done an eight and a half minute video going over this, going over some of the common concerns that clinicians might have. Am I going to open a Pandora's box if I ask about mental health? I don't have a lot of time, so there's an eight and a half minute video. She's also recently published this and it walks through things very carefully, and that is also on the website.

I will say that so many clinicians. Who have seen this video or have heard Erica talk in person say it has been one of the most important things in changing how they work with families. How they bring this up. It's given them the confidence to realize they don't have to fix it in one visit. And one [00:06:00] cardiologist said, I don't fix their congenital heart disease in one visit and now I realized I don't need to do this either. Listening in and of itself is an intervention. So we're so grateful to Erica for all the work she's done. And what she's ...and what you said, common sense. Yes, and clinicians are so focused often on the physical health aspects and the visits are, timed often that I think being able to feel comfortable with this is so very important.

Carol Vassar, host/producer: Jill, speak to that a little bit. In your experience, is there some fear on the part of clinicians and actually approaching families about their own mental health and wellbeing? 

Jill M. Plevinsky, PhD, Children's Hospital of Philadelphia: So I'll add that I work on the Roadmap project and I sort of wear two hats. So I'm also a former pediatric patient who grew up with a chronic medical condition, and now I'm a pediatric [00:07:00] psychologist who works with children and families with chronic medical conditions, and I've been working on the project for many years and presenting these ideas to several different groups of pediatric subspecialists. And I agree, I think there is some hesitancy because of the way that some subspecialty providers approach their patients and families and they really have a set of concerns that they're interested in addressing. If it's a cardiologist, they're going to be focused on their heart. If it's a gastroenterologist, they're going to be focused on their GI tract. But in reality, it affects the whole person. And, so what we're trying to do with this project is give pediatric subspecialists, and pediatricians broadly, tools and increase their comfort with addressing the whole person that's sitting in front of them and the family and their caregivers as well.

Carol Vassar, host/producer: Would you be willing to speak to the personal aspect? You did mention that you had a chronic condition growing up. Talk about the emotions that were around that and talk about whether or not that [00:08:00] informed your career path. 

Jill M. Plevinsky, PhD, Children's Hospital of Philadelphia: Well, it definitely informed my career path, and I speak pretty openly about that too.

I think that, You know, since I was in middle school, I'd always known I'd wanted to be a pediatric psychologist and work with kids in hospital settings who are dealing with chronic conditions. Growing up myself, I know that I struggled a lot with things like not wanting people to know, not wanting to have to take medicines at school. I even struggled with my own adherence in self-management at some times, and now that's something that I do as a career and I, you know, help patients and families navigate those challenges, which are quite typical, especially if you've got a child who is diagnosed at a young age. I was seven. And then grows up through adolescence and then young adulthood.

There's a lot of identity development and developmental changes that happen during that period that having a chronic medical condition can definitely impact that course. 

Carol Vassar, host/producer: It sounds like you have an empathetic ear and are really good just based on your experience and training. So I wanna ask about the research effectiveness and how you measure how all of this is working out there in the field.

Carole Lannon, MD, MPH, Cincinnati Children's: That is a wonderful question. We began our first pilot test of this during... we started in January, 2020 and two months later there were many challenges with the teams that were working with us collecting data, patients weren't coming in. So, some of the measures that we initially thought would be great turned out they weren't so helpful, and not just because of the pandemic, but some of the patient reported outcomes were very difficult to collect, interpreted differently by clinicians and families. The Board of Pediatrics has used two of these metrics as part of their maintenance of certification activity, and we've just looked at the first cohort that completed it, and we've seen some very positive outcomes, and we'll be using that in this next effort we'll be doing. 

The two things that we use are, one is a simple measure where we ask clinicians, was there documentation that emotional health was addressed? Because often ...it isn't, and there isn't any documentation that that happens. And there's a a few different ways that people can document that. The other thing that we're doing is we've developed a tool called the Readiness Checklist, where there are six things we ask about. How ready are you as a clinician? How ready is your team to address emotional health? And we have a scale that people can respond, and we found that people start out maybe doing really well in one area, but have nothing going on in another area.

One is that we actually use some of what Erica has done with the "Normalize, Ask, Pause, Connect" to help clinicians be more comfortable. So we are using this and we work with teams over time to really see how they implement these changes, how they become more confident and how this happens reliably in the clinic. So there's two different, one is a very simple measure, but we found that we just need to be that simple to help people get over that hurdle. Also, data burden right now is challenging for practices. So we've tried to keep it simple to monitor these outcomes. 

Carol Vassar, host/producer: Erica, I wanna ask, how have you implemented this in practice at Nemours?

Erica Sood, PhD, Nemours Children's Health: Yeah, so We incorporate "Normalize, Ask, Pause, Connect" into local trainings that we do starting within the cardiac center, which is where I spend most of my time. So we do a training for inpatient staff, primarily nurses on developmental care [00:12:00] practices and supporting the family and, we incorporate "Normalize, Ask, Pause, Connect" into that training. And we also have recently added it to our core fellowship cardiology fellowship series, lecture series. And so, We have a two-part lecture series with our cardiology fellows. We have them fill out a survey in advance and after the first training, and then similarly in advance again after the second training.

So far, we've only done it this year, and so I can't really report in the data yet, but we're hoping to expand to other fellowship programs within Nomore s and potentially other training programs as well. 

Carol Vassar, host/producer: Jill, how is this being implemented at CHOP? 

Jill M. Plevinsky, PhD, Children's Hospital of Philadelphia: So I will say it's not formally being implemented at CHOP just yet. However, I am aware that our residency program has a really excellent behavioral health curriculum where Dr. Katie Lockwood has developed an excellent program in collaboration with psychiatry and psychologists as well, who often come to speak to the medical residents [00:13:00] and pediatric residents about core mental and behavioral health topics, which I think is so important because it addresses these concerns prior to when residents decide whether or not they wanna subspecialize. So they already have the core foundation of understanding how important mental and emotional health is in children and families. And so when they do get to their next step in their training, whether that's a subspecialty fellowship or not, they have that core foundation.

Carol Vassar, host/producer: I'm going to ask a question of the group. I'm wondering, health equity is a big movement within healthcare, not only nationally, but internationally. What kinds of health equity principles are you bringing to bear within the Roadmap Project? Carole?

Carole Lannon, MD, MPH, Cincinnati Children's: When we were doing our pilot effort, which began in 2020 and went into 2021, we have always had a core group of patients and parents advising us, including Jill in wearing [00:14:00] both hats. We actually had a panel discussion during that, on the impact of being black on living with a chronic condition. And it was incredibly powerful. It occurred during the week that the Derek Chauvin trial was going on, and so it was a lot of honest conversation about things and three different themes came out. And we've those parents, we had three parents and a young adult patient who co-authored, who were on the panel, co-authored an article on that, which was recently published, available on the website. And three themes came out. One is the trauma of the lived experience that one has in our current country and setting. One was and it was a new word for me, but code switching, how you want to do what's [00:15:00] acceptable in the milieu that you're in. And often in the healthcare setting, some of the parents said, I would always, if my child was in the hospital, I'd get up early, I'd get dressed. I couldn't be looking in casual clothes or messy hair. I wanted to really appear that I knew what I was doing because I would be taken more seriously. And then one of the third themes that came out, which was really we've had a lot of feedback about how universal this was, is one of the challenges perhaps, of being sharing your emotional vulnerability in the ways that we've been talking about can be difficult if you're a minoritized, marginalized person, because then the, there's a concern about Child protective services being called. That if I appear emotional, if I appear angry, that I may, you may think I can't take care of my [00:16:00] child. So we have the video on our website. It's about 45 minutes long. We also have the paper that's come out recently published and it's called, it was in the Journal of Hospital Medicine, "The Impact of Being Black While Living with a Chronic Condition: Inpatient Perspectives," and really gives some action steps for what we as clinicians can do, what the system can do to really move forward and make a change. And just raising awareness about this is important. And I know Jill and Erica, if you can add, I know you've been involved in this as well.

Erica Sood, PhD, Nemours Children's Health: Yeah. And I think just normalizing, you know, we talked a lot about, about normalizing and asking and really just normalizing some of the challenges that families face and understanding or asking questions to understand their lived experience is so important, and not making assumptions that we know what they're going through or what they've gone through or what their experience is.

Carol Vassar, host/producer: Jill… 

Jill M. Plevinsky, PhD, Children's Hospital of Philadelphia: I think a key [00:17:00] third piece, too, and we touched on this a little bit earlier, is this idea that you don't have to be a mental health provider to assess mental health. And I think that that is, that drives some of the hesitancy of the pediatricians that we speak to, and we really try to communicate this message that anyone can ask about these things. And it's also not necessarily on you to solve these issues either, but rather, like Carole was saying, just the idea that listening and normalizing and validating these concerns and experiences is really an intervention in itself. 

Carol Vassar, host/producer: And being aware. 

Jill M. Plevinsky, PhD, Children's Hospital of Philadelphia: Mm-hmm. Yes. Yeah. 

 Carol Vassar, host/producer: Erica, I wanna ask you a question, from a Nemours perspective: as you look at the Roadmap Project as you look at your presentation earlier today. How does this fit with the Nemours strategic plan and the idea of well beyond medicine? 

Erica Sood, PhD, Nemours Children's Health: I think it's a great fit. I mean, I think what Nemours is really striving towards is to support children and support the whole child and the whole family beyond just [00:18:00] the very specialized physical medical care and, you know, the very important concept that, we can't bring about the healthiest generation of children without also supporting emotional health and without also supporting the whole child and the whole family 

MUSIC: Well Beyond Medicine!

Carol Vassar, host/producer: Thanks to pediatric psychologist Dr. Erica Sood from Nemours Children's Health, pediatric psychologist Dr. Jill Plevinsky from the Children's Hospital of Philadelphia, and pediatrician Carole Lannon from Cincinnati Children's Medical Center, for sharing their time and expertise regarding the Roadmap Project. As of July 2024, the Project continues to use the Readiness Checklist mentioned by Dr. Lannon for clinical teams to assess their readiness to address emotional health in children with chronic conditions and their families.

Among 26 pediatricians using it, improvements were seen in all checklist components and in documenting emotional health assessments during clinical encounters.

An ongoing cohort of 39 teams from 17 hospitals and 15 subspecialties shows similar preliminary improvements in both checklist components and emotional health assessments.

We’re glad you joined us today. If you haven’t already, we’d love to hear from you about Well Beyond Medicine topics for future episodes of the podcast. Visit nemourswellbeyond.org and leave us a voicemail. That’s nemourswellbeyond.org, where you can also subscribe to the podcast and leave a review. 

Our production team for this episode includes Che Parker, Susan Masucci, Lauren Teta, Cheryl Munn and Jennifer Reardon. Join us next time as we hear about the ways exercise and healthy eating are being introduced to preschoolers across 12 states - to great success. I’m Carol Vassar, until next time, remember, we can change children’s health for good - well beyond medicine. 

Music: Well Beyond Medicine!