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

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Janette Reyes, NP - phaware® interview 204

Nov 6, 2018

Janette Reyes, NP has provided comprehensive care for children with Pulmonary Hypertension at the Hospital for Sick Children since the development of the Pulmonary Hypertension Service in the year 2000. She is involved in research and strives to improve pediatric patients’ quality of life. Janette discusses Child to Adult Transition Guidelines specific to the pulmonary hypertension patient population.

I'm Janette Reyes. I'm a nurse practitioner, and I work at the Hospital for Sick Children in the cardiac program, and I care for patients with pulmonary hypertension from age zero to just right before they turn 18 years of age when they're admitted as an inpatient and mostly when they visit the clinics.

Back in 2000, I did see the need for a transition program for our pulmonary hypertension patients, specifically from one pulmonary hypertension center to an adult pulmonary hypertension center. In 2005, along with a transition program at the Hospital for Sick Children, I developed a workshop where the patients who are 17 years of age, who are ready to transition into the adult world, I would hold a half day workshop helping parents and those patients learn about what's on the other side. Then I would have the doctor in the adult center come over, introduce himself, put a face to the doctor that they'll be seeing. Parents and patients would ask some questions and then we would go over and I would give them a tour of the center.

The patients really found that valuable, so we've been doing that since, as well those patients who can't attend the workshop I do a one-on-one individual session. Parents and the children completed evaluations after each session and I put together a little survey. Prior to the transition, the parents were actually more anxious and nervous about their child going to the adult world. But then after the transition, the parents were comfortable. It was more the children that kind of [experienced] their anxiety rise a little bit. I guess knowing now seeing what's on the other side. However, when I do speak to some of the patients and families, they did say the transition workshop really helped them and as well in terms of preparing and just knowing what to expect really was helpful to them.

At age 14 is when we start preparing. We start the preparation talking about their disease more, making sure they understand why they're in the clinic. As they get older, age 16 and up, they start to become more responsible with their medication. We encourage them to perhaps renew their medication, their prescription and as well we start talking about college or university, what to do, where to go, and we help them create a passport which includes their diagnosis, medications, doctors, our contact information, the new doctor's information, the hospital, just so that if ever they go to [the E.R.], the doctor would have that information. They found that helpful as well. I think that helps.

Children are different, right? Each child is at a different cognitive stage level, so some are more mature than others and we take particular note of that in regards to the speed of the transition. I think every family's different. You will have children that are more dependent on the parent because of the helicopter-type of behavior from the parents. But because we do prepare the patients and expect that in families, particularly with me, when I see the families in clinic I do at age 14 start to give them an idea (the parents particularly) “Start moving away from the care and allow your child to be more independent and let them know that at the end it's really for their good and for their benefit.” Then that sort of helps them that they don't feel that we're trying to separate them. We're just trying to make them independent because for whatever reason if the parent isn't there, then at least the child is going to have some control and independence in their care. That process is getting better, but we do have the challenges in that situation and I think with the awareness of the adult centers having these type of families going into their centers, they're more prepared.

Now it's more of a transition, so the adult world aren't just going to start their treatment as an adult for the patient, it's more of a transition. In the beginning, they will include the parent and then slowly start to speak to the patient on their own. Teenagers, young teenagers they're so laid back. They actually don't think too far off into the future, so whenever I would ask them, "So, are you nervous going to the adult world?" It's always like, "No, it's going to be fine." Just like the survey, or the evaluation that I found, they weren't as anxious as the parents. If anything, I do encourage them to think about issues that they may have, questions that potentially maybe they're not thinking at the time, but it's going to be issues as they get older. In particular, sexuality, protection, issues with going out into the workforce. Again, like as I mentioned earlier, university. Those things, even though if they don't tell me, I know that's going to be issues that could certainly contribute to their anxiety.

We kind of make sure that they can talk to me about that and I help them with the transition by giving them the information and resources that are available out there. The reason why this transition is happening is because certainly there are more and more targeted vasodilators that are being approved by the FDA and the Ministry of Health in Canada, so these children are living longer and it's great to see. Right now where we're at, even though this transition program was started early in the 2000s, I find that actually now it's still even a stronger issue that needs to be addressed, because there are more children that are transitioning into the adult centers. We need to get, as well now, the adult centers involved in this transition and to understand these young adults. They're not completely adults yet, they're in transition.

I'm Janette Reyes and I'm aware that I'm RARE.

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