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I'm Aware That I'm Rare: the phaware® podcast

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Tilman Humpl, MD - phaware® interview 158

May 29, 2018


Dr. Tilman Humpl is the Director of the Pulmonary Hypertension Service at the Hospital for Sick Children in Toronto, which is part of the Pediatric Pulmonary Hypertension Network (PPHNet). One focus of Dr. Humpl’s clinical work is the management of children on a ventricular assist device. As the Director of the Pulmonary Hypertension Service at the Hospital for Sick Children, he runs an outpatient clinic with referrals from several Canadian provinces. In this episode, Dr. Humpl discusses pediatric pulmonary hypertension patients transitioning to an adult PH program.

I'm Dr. Tilman Humpl. I'm the Director of the Pulmonary Hypertension Program at the Hospital for Sick Children, so basically covering the province of Ontario.

Today I'm going to chat a little about transition of pediatric patients to adult counterparts. If you look back in the '90s when our colleagues from oncology were already busy publishing their results, their experiences, in transitioning pediatric patients to the adult medical environment, this was a time when prostacyclin just hit the ground as a potential treatment option for pulmonary hypertension, so we are clearly lagging behind.

I remember when I took over the pulmonary hypertension clinic from Dr. Ian Adatia, it was a very small number and a lot of patients were diagnosed late. We didn't have the full treatment option that we have now and, 20 years later, we are actually really able to bring a lot of these kids to their 18th birthday. This is usually the transition when they go to the adult world, at least in our institution.

What a lot of these families and patients experience is there's a lot of trust initially over the years that you build in the pediatric institution and all of a sudden at age of 18, they have to transfer it over and things go different in an adult institution. There's not any more relationship between the family and the physician. It's more a partnership between the adult caretaker and the patient. Parents are being a little bit left out. Procedures are being done in a different way, and this is something that there's a lot of anxiety for these patients and families.

What we've try to institute over the past couple of years, is that we either have, if it's only one patient who, in a certain time frame, moves across the street to the University Health Network, we have the team. One or two of the physicians or one or two of the nurses come over and we have a combined clinic, or we do sort of transition workshop if we have a couple of kids, then they all bring their families and we have a daylong where basically the handover happens, without going into detail about the medical history, but this is a graduation for these kids and they're quite happy. They get a little certificate and then we all wave goodbye.

Most of the time the parents are more concerned because they lose also a little bit control. Usually these teenagers are pretty cool. They're not very stressed about it, it's more the parents, but I've seen both. Some of these kids, 16, 17, 18-year olds, they also want to get out of the pediatric environment, so it's actually quite interesting. But, they don't know exactly what they're facing. It's a new chapter in their life.

Sometimes we transition a patient at 17. Recently, we had a patient who most likely is going to be listed for lung transplantation and we decided to do the transition a little bit early. This was actually around the time when also something happened at school. If you have somebody who's really advanced in development, I start, sometimes 13, 14, years of age, make more eye contact. At some point, we also discuss making the clinic appointment with the patient and not to the schedule to the parents. It also depends a little bit on the frequency of visits where we see this patient. If there's a patient who comes back to our clinic every three month, it's a little bit moot point to start the transition at the age of 14 and it's maybe more in the 16, 17 range because we still have 10 to 12 visits ahead. But if it's a patient who comes only every six to 12 month, then we start a little bit earlier. But again, it's an individualized process. There's no protocol that we strictly follow.

Not every patient can be cured, despite maximal therapy, despite listing for lung transplantation early on, death on the waiting list, but it's clear we have more and more patients being transitioned to the adult programs. It brings a lot and means a lot to me that we are able to transition kids and make them live longer and partially live a normal life. It's a very gratifying feeling.

My name is Dr. Tilman Humpl and I'm aware that I'm rare.

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