Transcription:
The Transition To Adult Care: Pediatric Hydrocephalus

Caitlin Whyte (Host): Welcome. You're listening to Pediatric Insights, Advances, and Innovations with Children's Health. I'm Caitlin Whyte. Switching from pediatric to adult medical care can be daunting for children and parents alike. So, today we are discussing the transition to adult care with our experts. Joining us today are Dr. Bradley Weprin, the Division Director of Neurosurgery and the Director of Neuro-oncology at Children's Health and a Professor at UT Southwestern. Also joining us is Dr. Patricia Petroff, a Pediatrician for Complex Care Medical Services at Children's Health and an Assistant Professor at UT Southwestern. So, let's start with some details about the Transition to Adult Care Program at Children's Health. Dr. Weprin, how, when and why was this created?

Bradley Weprin, MD: I can speak primarily to the Healthcare Transition for Patients with Hydrocephalus, which is the program that I helped develop and get into motion. And this had its start a couple of years ago after I came home from a national meeting, found an envelope on my desk. Within that envelope, was a thank you note from the patient family of Joey, who was a young man with shunted hydrocephalus, who I hadn't seen since I had referred him on at the age of about 24 to an adult partner. And I had been taking care of Joey for a number of years. And then also in that envelope was an obituary. Joey had died the month earlier from malfunction of his shunt, never having made it to my adult partner or any other adult neurosurgeon with expertise in the management of hydrocephalus. During that time, I then became involved with a number of my colleagues around the country to look at transition and whether we were doing it appropriately. We had actually published a paper back in February of 2020, which detailed the struggles that patients with hydrocephalus encounter as they move from adolescence and young adulthood into adulthood.

We found that the vast majority of pediatric neurosurgical practices in North America, so the United States and Canada, failed their patients, as the vast majority did not have transition of care programs. And I decided that this was something that we needed to take on. So, I began working with colleagues in the Health Care Transition Office here at Children's Health, and started to meet with a variety of different stakeholders throughout the organization, both at Children's and UT Southwestern to garner support and financial assistance.

And over the course of about a year, we developed a program that followed established best practice guidelines to help patients, parents, family members transition.

Host: And Dr. Petroff who makes up this team?

Patricia Petroff, MD: At Complex Care Medical Services, we see children with medical complexity in a multidisciplinary clinic. Our team consists of the physician, a social worker and a care coordinator, and each person has designated tasks to help prepare a family to transition safely into adulthood. So, as the provider, I'm going to begin that discussion with the family and let them know how long I'm going to be seeing them in our clinic. And then our social worker may discuss with subjects such as guardianship and legal things that they may need to know about. And then our care coordinators are reaching out actually monthly to our families and reminding them, especially as they're coming close to graduation, on the skills that may be needed and the tasks that need to be done to help them safely transition to the adult world.

Host: Now, Dr. Weprin, you touched on this in your first answer about your patient, but why is it important for pediatric health care systems to offer this resource to patient families?

Dr. Weprin: We know not just in individuals who are burdened with something called hydrocephalus, but in a vast number of children and adolescents who suffer chronic disorders and diseases that as they move into the adult health world, there are significant gaps in their healthcare services that they encounter. And those gaps ultimately lead to worsening health outcomes, increased psychosocial and emotional stress and increased healthcare costs.

Host: So let's talk about some of the details. Dr. Petroff, can you go into the different resources that your team provides?

Dr. Petroff: When they are 16 years old, we began to talk about, and in our case, we have children who are seeing multiple specialists. So, we start talking about how to prepare a plan. So, depending on the level of disability of a child, it could be planning on beginning to learn their medications, what they're used for and knowing who their providers are and what they see that provider for. Or it might be beginning to give resources for legal aid and where to reach out to obtain things like guardianship. We also, as they get closer, began to help them learn to talk to their service coordinators and to identify adult providers on their plan. And we start referring into the adult specialty providers trying to transition them before they leave us so that we can give a safe handoff. So, that might look like at 18, we might identify for example, this child has been followed by a neurologist. We want to talk with their neurologist to see who they're going to transition to as an adult and make sure that appointment happens and help them to schedule that appointment. We hand out a packet every six months from 16 to 19 and go through that packet with the parent and we might assign a homework task.

Like your homework for this visit is to identify a provider on your plan that you would feel comfortable going to, or it might be for a seventeen-year-old, your homework is to learn your medicines. And the next time you come back, we're going to talk about them. So, that we're helping those teens to become more independent and to be able to evaluate their own care.

Host: Now, with all the patients you see Dr. Weprin, how do you ensure that these resources are offered to all families who need them?

Dr. Weprin: Our patients generally enter into our program around age 14, and we have worked with Children's Health to establish a database that includes all of our patients with hydrocephalus and allows us to follow and track them throughout the course of the program and actually beyond.

So, when a patient at age 14 sees us, they're also, they and the family member are asked to complete a transition readiness and preparation assessment or survey. And this was developed based on what we felt were the most important needs for patients to be able to develop as they move into adulthood. What Dr. Petroff had just alluded to, to basically live as independently as they can or for parents to recognize what sorts of things they're going to need when their loved one becomes an adult. So, they fill out this survey, it provides us then a backbone, a starting point, and each time they're seen, until graduation, they complete the preparation and readiness assessment so that we can follow what needs to be worked on and what we feel needs to be completed.

And then upon completion of the program, before their care is actually physically transferred, the families are asked to complete another survey, which is an assessment of our overall program, how they think we've done in educating them and providing them the necessary tools so that we can then ensure that we're better. Ultimately, a year after the patients move from our facility to an adult care facility and provider, we contact them again to assess how well they've been integrated and how we can then facilitate or correct issues that have arisen as they moved and graduated.

Host: And Dr. Petroff, you mentioned you start this process at age 16 and follow up every couple months after. Why do you begin at this age to have these conversations about the transition to adult care?

Dr. Petroff: Well, I think for families with medical complexity, it is hard sometimes when they've been at the pediatricians for years to begin to see their child becoming a young adult. We want to start planting that seed early. We see our children through 19. And so those three years from 16 to 19, we tell parents that sounds like a long time, but from 16 to 19, a lot is happening and it will go fast. And so we want them to be prepared and thinking about those so that we can do that safe handoff.

Sometimes for our particular patient population, we did have a lot of discussion about when to start. And so we picked 16, but when a new family comes in, we'll very gently just say, this is how long you'll be with us. And in some families, we may go a little bit earlier in that discussion, but our program begins at 16 where we have it very formalized.

Host: So what advice Dr. Weprin, would you give to other healthcare providers on this topic?

Dr. Weprin: The most important advice I can give is, is what do we mean by health care transition? And first, what do I not mean is healthcare transition? Healthcare transition is not a single solitary event. I do not mean that healthcare transition is simply a referral to an adult provider or specialist or health system. Health care transition is a formal process that takes time.

Dr. Petroff just alluded to that, that their patients start at 16 and it takes years to accomplish the goals that are necessary to provide appropriate integration into adult healthcare models. It's an active process, and again, for us starting somewhere between 12 and 14 years of age. It is the planned and purposeful movement that includes training of adolescents and young adults, from a child centered health system to one that's colder and much different, the adult system. Our medical literature is filled with numerous studies that demonstrate that structured healthcare transition programs, improve health outcomes, and quality of life measures for a variety of chronic conditions.

Host: And Dr. Weprin, as we wrap up here, do you have any other advice or resources to share?

Dr. Weprin: I think that a health care transition program is an iterative process. So, it's constantly being changed to meet the needs of a particular patient population or community. Not all healthcare transition programs are the same. And it requires a significant amount of effort on behalf of a respective health care system. And so I think that Children's Health has done a remarkable job of creating a Healthcare Transition Office to help providers do what I think is important for their patients.

Host: And Dr. Petroff, same question for you. Any closing thoughts?

Dr. Petroff: Yeah, I think for physicians that are looking to develop a transition program in their practices, they can look for resources at the American Academy of Pediatrics. There's a program called Got Transition. And then as Dr Weprin said, at Children's Health, we have the Transition Office and at the children's.com website, you can search transition and get information and important links both for families and providers to start thinking about those topics that you may want to discuss with your family. The survey that Dr. Weprin discussed, the questionnaires, there are several out there. One is called TRAQ, T-R-A-Q. And many programs use those tools with their families. So you don't have to start from scratch. There's a lot of research out there and a lot of information that families and providers can access.

Host: Well, Doctors, thank you so much for this information and these resources and letting parents know that we have the tools to help them transition. And as always thank you for listening to Pediatric Insights. For more information, head on over to children's.com. I'm your host, Caitlin Whyte. Stay well.