Transition to Adulthood with a Chronic Illness: Preparing Early

When you have a chronic illness, the key to a smooth transition from pediatric to adult healthcare is preparing several years in advance and talking to parents and healthcare providers about how they can help.


Transition to Adulthood with a Chronic Illness: Preparing Early

Sarah Reilley: I've been treated at CHOP — before I transitioned — for about 17 years. I was 5 years old when I received my diagnosis of Crohn's disease. I mean, it's been such a big part of my life, it's almost like a family member. When someone brought up the idea of leaving CHOP, it wasn't too much of a surprise because I've — I kind of grew into it. I knew at some point that I was going to be leaving into my teenage years. I mean, you want that independence, and you need to move on to the next step in your life.

Robert Reilley (Sarah’s dad): As far as Sarah leaving CHOP to be treated somewhere else and by other doctors, I think that every parent, as well as us — we had a fear. We knew it would come along sooner or later. But I think that the sooner that we recognized that and the sooner that we had her involved in that, it would be less stressful for us as a whole.

Anil Rustgi, MD: It's obviously good to be prepared so that the anxiety associated with a change in the physician, a change in the nurse, change in the environment, is alleviated, if not eliminated.

David Piccoli, MD: We've recognized that we really need to start talking about this at an earlier and earlier age, so we're expanding it even more and starting to talk with families about it 2 and even 3 years before they actually are ready to transition.

Sarah Reilley: They're not just like, "Here's your papers, here's your file, see you later." They help you out with finding a doctor, with knowing all that information you have to know to move on, and giving you time to do that.

Ritu Verma, MD: You know in your brain that they have to move on, but you know in your heart that they are like your children, so you don't want them to grow up and move on.

GI Patients Moving to Adult Healthcare - Gaining Independence Form Your Parents

Charles Rawlings: I told my mom, I said, "Let me handle this on my own, let me handle this on my own. See if I can handle it on my own, and if I can't, then that's when you jump in." So she was like, "OK, all right." But she didn't feel too comfortable jumping out of it, you know. She still wanted to hold me by the hand. I said, "No, I got this, I got this."

David Piccoli, MD: One of the things that we've realized for a long time and maybe weren't as effective in dealing with is the fact that when you have really great parents who take care of everything for their children, the children don't develop an independent ability or responsibility for taking care of their own issues.

Maggie Baldwin: My dad has always been really helpful. When I'm in the hospital for months, he'll actually come over and sleep on the couch next to my bed, and he's always helped me get through everything.

Jeff Baldwin (Maggie’s dad): I don't tend to be a micromanager of Maggie's life or her care, so maybe that makes it easier. I'm willing to let her spread her wings, and if she has trouble she knows she can — she has something to fall back on. But I don't necessarily oversee every element of everything she does. And if she skins a knee once in a while, well, it's part of life.

Maggie Baldwin: I definitely want to do this myself. I love that he's there to help me, but I know that in the future he might not always be around, so I need to learn how to do it myself.

GI Patients Moving to Adult Healthcare - Having Appointments Alone With Your Care Team

Anne Grant, MSN, CRNP: What's important in terms of starting to prepare for transition is that you spend some time one-on-one with your pediatric provider.

David Piccoli, MD: The first time that we ask the parents to step out of the room is a big emotional step for the parents, and usually, early on, the patients say that there's not really any need for their parents to leave. And then we start to insist that they leave during the examination, and finally we get to have some serious talk with the patients with their parents outside of the room.

Petar Mamula, MD: And then we also use that opportunity to see if they have any concerns or questions that otherwise they may not ask themselves. And some of them have to do with lifestyle, you know, issues with alcohol, issues with drugs, issues with sexual activity.

David Piccoli, MD: There are just so many issues that are easier to talk about with their physician or their nurse rather than with their parents.

Susan Peck, MSN, CRNP: If it's anything to do with sexual activity or any of those issues, we'll keep it confidential. And if we think that their family needs to know about the issue, then we will help them discuss it with their parents.

David Piccoli, MD: It can really be validating and empowering for them when they get to give an opinion and also know that we're not going to discuss that with their parents.

Maggie Baldwin: I haven't yet, but I'm going to start asking about having time alone with my doctor soon, because now that I'm hearing that other people my age are doing that, I would like to start doing that too, just to prepare for college and life.

GI Patients Moving to Adult Healthcare - Using Your Care Binder

Anne Grant, MSN, CRNP: The Care Binder is a tool we've developed that gives young people lots of information about disease process, about transitioning to adulthood.

Petar Mamula, MD: It's a very organized set of guidelines of what they need to do in order to be well prepared for transition.

Susan Peck, MSN, CRNP: I think the binder is very helpful in that it puts the responsibility onto the young adult to start collecting their healthcare information and knowing what has gone on in their past.

Petar Mamula, MD: Now that it's very organized and it's printed out for the family, I think it leaves very little room for error that we will omit something that may be quite important to them.

Susan Peck, MSN, CRNP: A lot of the kids just zone out when we're talking about results, and they let their parents take care of it, but when it's handed to them in black and white, it gives them the opportunity to review it and then ask questions.

GI Patients Moving to Adult Healthcare - When Do I Have to Switch to Adult Care

Anne Grant, MSN, CRNP: Transition doesn't have a defined age. I think that most of the world is moving toward around age 18-22 as a prime opportunity time for transitioning young people.

Farzana Rashid, MD: The main thing is the readiness of the patient and their family and the maturity level of the patient and when they feel they are able to transition into the adult side. And it also depends on what they are doing in their life. If they are going to college for 4 years and prefer to stay on with their pediatric provider until they graduate and then settle down, then that is decided between the pediatrician and the patient.

GI Patients Moving to Adult Healthcare - Sarah Chooses a New Doctor

Robert Reilley (Sarah’s dad): One of the fears that I think that her mother and I had was, how are we ever going to find another doctor for her…[who will provide] …as good of care as we received at Children's Hospital? I think that was the biggest question we had.

Anil Rustgi, MD: Our patients and their families should not be afraid. We're good people, and we are geared towards helping people.

Mark Osterman, MD: We have great communication between CHOP and our health system as far as patient records and knowing what's going on. We often even talk to the docs beforehand. They'll give us a call, tell us they're sending us someone, we'll talk about them a little bit.

Farzana Rashid, MD: That's the beauty of the CHOP transition program. Before a patient comes to see me in clinic, I have at hand their records, and I have a letter summarizing their medical history to date, including medications that have been tried, surgeries that have occurred. So it's a very good summary.

Mark Osterman, MD: A lot of us have, sort of, very similar medical knowledge, but all of us have different personalities and different ways of dealing with people and with problems. I think that it's important to know that. One of the really important factors is finding someone that you really mesh with.

Sarah Reilley: I knew that Dr. Osterman was a great doctor for me because when I initially met him, he was definitely on the same level as me. He knew how to talk to me and my age range, and he seemed very educated and very personable, so I wasn't scared to speak up.

Mark Osterman, MD: In the long run, I think it ends up being that they feel comfortable sharing things with you. I think the more they share, the better you can help them because you can sort of take what they like to do and what they don't like to do and figure out a way to treat them in a way that works for them.

Sarah Reilley: Ultimately, it's your care and it's your life care, because once you're an adult, you're an adult, and I want to stick with the same doctor for a very long time. So I definitely see that in Dr. Osterman, and I can definitely see myself growing up and having a family and seeing him for care and feel very confident with him.

Charles Rawlings: Make sure that they care for you and make sure they understand. Make sure they understand you and be very patient with you. That's the most important thing.

GI Patients Moving to Adult Healthcare - Asking for Help

Sarah Reilley: I think with transitioning, you definitely have to have someone that can help you that can guide you along the process. For instance, Anne Grant, she's wonderful, and I feel like every children's hospital should have someone like that — a coordinator that you can go to for questions and help.

Anne Grant, MSN, CRNP: When I first meet a family, I introduce myself as someone who's basically going to serve as a resource, a coach, whatever they sort of need me to be, a mentor, a friend, a guide. Farzana Rashid, MD: Patients should note that they have support, and the lines of communication just need to be open between the patient, their parents and the providers, because the providers are there to guide them through every phase of their life with personal changes and disease changes. And they are never alone.

Keyshla Torres: Once in a while, you do need help. You do need somebody to give you advice, you do need to ask for help. I wasn't the person to be open to people, and I've learned that throughout everything I've been through and the condition that I have that yes, it's good to have help. I have to ask for help. If I don't ask for help, I don't know where I would be right now.

Related Centers and Programs: Division of Gastroenterology, Hepatology and Nutrition