Melanie Cole, MS (Host): Welcome to Better Edge, a Northwestern Medicine podcast for physicians. I'm Melanie Cole, and we have three Northwestern Medicine Marianjoy Rehabilitation Hospital physicians in a thought leader panel for you today to discuss the important aspects of transitioning pediatric patients to adult specialists.

Joining me is Dr. Larissa Pavone, she's a pediatric physiatrist and program director of the Physical Medicine and Rehabilitation Residency Program; Dr. Mary Keen, she's a pediatric physical medicine and rehabilitation specialist; and Dr. Anton Dietzen, he is also a pediatric physical medicine and rehabilitation specialist. Doctors, thank you so much for joining us today. Dr. Keen, I'd like to start with you. Why is it particularly challenging for special needs patients to transition to adult specialists? How do you help them navigate these challenges?

Mary Keen, MD: That's an excellent question, and there are a few reasons why it's challenging. One is that my patients typically are very comfortable coming to Marianjoy for rehabilitation. And many of my patients have been with me for almost their whole lives. So, we have a comfortable relationship, and the idea of changing can be uncomfortable and challenging.

The other issue is that there are not lots of physicians out there who are prepared to take care of patients with special needs. My patients don't fit the mold for a 15-minute appointment. Typically, they need more than that for communication and other issues, and because typically our patients will have a long problem list, more like a geriatric patient than a healthy young adult that a lot of our primary care physicians are taking care of. There is a feeling of discomfort on the part of adult physicians because of lack of exposure, as well as the fact that they are oftentimes tied to a 15-minute time slot. How do I help them navigate these challenges? Well, we start talking about it in their middle teens, and we have accumulated a list of about 10 or 15 doctors who have indicated an interest and comfort level in taking care of young adults with childhood-onset disabilities. That has made a big difference.

Melanie Cole, MS: Thank you so much, Dr. Keen. So, Dr. Dietzen, as a pediatric physical medicine and rehabilitation specialist, tell us some key considerations that rehabilitation specialists should really keep in mind when transitioning these patients with physical disabilities to this adult care because it's really a milestone for them.

Anton Dietzen, MD: Like Dr. Keen touched on, a lot of times these patients have very complex histories, and we tend to know them really well. I think our specialty of pediatric physical medicine and rehab, we do a lot of care coordination. And so, I think patients get used to us sort of knowing what everyone else is doing on their care team. And we might not be managing every single issue we have, but we're trying to be aware of all of them. And if something isn't being managed or there's room to improve the way that a condition is being handled or addressed or concerns being handled, we tend to do some of that coordination of care. And I think that's something that I think is a little bit unique to pediatric physical medicine and rehab and can be hard to transition that piece over to our adult counterparts. Because sometimes, the expectation, I think, is probably a little bit unfair that they're coming in, they don't know this patient, they don't know the long history and haven't had the time to build and develop the rapport and trust that we have, and the expectation is they're going to take over and manage all these problems and coordinate care and things like that. So, I think setting expectations and really trying to find out where the priorities lie with the patient and the caregiver is very important.

Larissa Pavone, MD: Yeah. I think, kind of partnering on what Dr. Dietzen said in regards to that is there are certain things that we take care of. And as pediatric physiatrists, such as school needs, so we'll often communicate with the child's school, or we'll communicate with their community therapist. And so, we do a lot beyond what we're doing within the office. And I just think that's a really challenging thing for most physicians given the time constraints that we have around appointments these days. So, I think it's really challenging when going to that adult world from the pediatric world.

Melanie Cole, MS: Dr. Pavone, along those lines, then speak about the importance of beginning that transition to adult healthcare providers at an earlier age rather than later on.

Dr. Pavone: I think Dr. Keen alluded to this a little bit already, it's a hard transition. I think it's hard for the patients and their families, and it's also hard for us. A lot of these patients, I always say I've been in practice over 10 years, and I've grown up with the patients and their parents, and so there's a really deep connection there when you've grown up with them and helped some of these families through what is like the most challenging part of their life. So, talking about transition in their early teenage years and when it's going to occur, what's going to need to happen is essential in getting them ready for transition. So, it's not uncommon to start those conversations really early to be able to prep everyone for them and also start looking for physicians that can care for them, because sometimes it can take some time. I've had patients that see one or two physicians before they find the right one for them, so just to make sure that there's enough time to do a good transition that everyone is comfortable with.

Melanie Cole, MS: Dr. Keen, turning to you, speak about some of the innovative approaches or resources that can really facilitate smoother transitions for these patients with complex physical needs.

Dr. Keen: A major innovative approach that has been helpful in so many ways is our electronic medical record. That way, we have, in many cases, direct access to old records. However, the electronic medical record is extraordinarily complex. It's hard to find all the pieces in thousands and thousands and thousands of pages of documents.

So, one thing that I have found is useful is I provide a portable medical summary that can be put on a stick or in an email that summarizes their medical problem list, their current level of function. So, if they show up in the ER, someone would know if they can talk or not, if they're usually awake or not, etc. A list of their other doctors and community resources that they use as well as a very simplified care plan and list of medications. That list is pretty comprehensive, and it takes me a couple of hours to prepare it, but it does make the transition easier for the outside doctors.

Melanie Cole, MS: Dr. Keen, I'd like you to expand a little bit about some strategies that can be employed to ensure the continuity of care during this critical transition period. You spoke about medication management and some things. Please expand just a little bit about some of the strategies you specifically use.

Dr. Keen: The most important strategy is not being in a hurry. It's not a one-and-done appointment. A transition is a process that takes a couple of years. As Dr. Pavone mentioned, it sometimes takes a while to find a doctor who is the right fit on both sides, and there is lots of information to be transmitted. So, it's not a one-and-done one visit, and you're transitioned out. Typically, it's a process going over several months before everybody is comfortable and ready.

Dr. Dietzen: Yeah. If I can add to that too, I think one thing that we try and do here at Marianjoy, when we're able, is doing a warm handoff and trying to overlap a visit. So, if a patient is seeing one of our adult counterparts, and we're free and able to join for a portion of that visit, I think that can do a lot to kind of build trust and things with the new physician as well.

Melanie Cole, MS: That's an excellent point, Dr. Dietzen. And Dr. Pavone, I'd like you to speak about the interdisciplinary collaboration between pediatric and adult care teams to enhance that process of transition, because that is really one of the more important aspects of this.

Dr. Pavone: Interdisciplinary collaboration is something as rehab physicians that we do on a daily basis with our patients and the teams that are around us. I think also, in the western suburbs and in the pediatric realm, we have a lot of really great colleagues out here who all care for the same population that's really medically complex. You know, we know who we go to for GI. We know who we go to for pulmonary. And all these physicians and their APRNs are very willing to have conversations via phone to optimize the care for the patients.

And so, I think having that handoff between the pediatric and adult care team is essential. Having those verbal handoffs are extremely helpful, I think the healthcare summary that Dr. Keen talked about is essential. But also, if it is possible to have a verbal handoff and kind of just highlight some of the things that are most important, nothing beats that verbal handoff. I think in all realms of life, we're all used to texting and emailing, but there's just something more you can get from having that encounter via phone or whether it be face to face, which obviously that's very hard for it to happen. But continuing that interdisciplinary collaboration is really important. And I think that's one of the challenging things when patients are transitioning is finding the different physicians and APRNs that will be able to talk to one another, as we have throughout their childhood.

Melanie Cole, MS: Dr. Pavone, sticking with you for a second here, as we think of the unique needs of these young adults, speak a little bit about how you effectively manage their needs while they're transitioning to adult specialists. If you were to speak to other providers and say, we're managing some of these particular conditions and comorbid conditions that go with their disability as you do the handover, how does that all work together?

Dr. Pavone: So, we continue to manage them as we have always continued to manage them. You know, yes, you're handing off their care to an adult physician during this process, but it doesn't change the care that you give. If you are going to be handling one of their unique needs, I think of things such as prosthetics, if you have a patient with a prosthetic or a certain type of specialized wheelchair, talking with that adult physician about what's current and what you're doing. Sometimes it's partnering, just as Dr. Dietzen said, over that first visit to help have an effective handoff. So, I think partnership is really essential.

Melanie Cole, MS: This has been a very enlightening and eye-opening episode. I thank you all for joining us and listening. Dr. Dietzen, and last word to you here. What advice would you give fellow rehabilitation specialists who are either transitioning patients to adult providers or accepting new adult patients previously under the care of a pediatric specialist?

Dr. Dietzen: I think on both ends, you know, really, it comes down to communication and expectations. And I think the more clearly we can communicate with our patients the reason for the discussion of early transition and what goals we're trying to accomplish with that. And then, on the patient side, for the new provider, really trying to get a good understanding of what they're looking for in the relationship and what kind of issues need to be managed. And then, if it's not something that can be addressed by their particular specialty or expertise, continuing to look outside that and, like Dr. Pavone and Dr. Keen both mentioned, sometimes it might take a little bit of trial and error to find the right provider to partner with that you feel that level of trust with and things. So, just understanding that it's a process and trying to be clear with what your expectations and goals are for the visit so that everything can be addressed as comprehensively as possible.

Melanie Cole, MS: I thank you all so much for joining us today. so much for joining us today and really giving great information to other providers about this topic. And to refer your patient or for more information, please visit our website at breakthroughsforphysicians.nm.org/rehabilitation to get connected with one of our providers.

That concludes this episode of Better Edge, a Northwestern Medicine podcast for physicians. Please always remember to subscribe, rate, and review Better Edge on Apple Podcasts, Spotify, iHeart and Pandora. I'm Melanie Cole. Thanks so much for joining us today.