IWK program helps teens switch to adult care and avoid relapses

Amanda Higgins had never thought about graduating from the IWK Health Centre until one of her physicians brought it up during an appointment.

Higgins, now 20, received a diagnosis in her teenaged years that she does not want to disclose.

She grew accustomed to following the blue wave that guides families through the hallways of the IWK to the elevators, and sitting in the familiar waiting rooms.

Until that moment, her parents had been by her side for all her appointments.

"I remember my parents stepping out for a minute and that was really my first time being one-on-one with my doctor, and really a fear of unknown," she said.

Higgins says she had moments where she found the transition to care at the QEII intimidating, but now that she's made the switch, she's helping other young patients through their own journeys.

Higgins is a peer mentor in the IWK's You're in Charge program. The program offers workshops to teens between the ages of 12 and 15, along with their parents.

Higgins advises patients, some of whom have had the same specialists their entire lives, and gives them the advice she wishes she received before moving to the adult hospital. 

She wants the patients to know the process can be empowering.

"I often find that it's the smallest questions that cause the most worry amongst the youth. So where's the appointment? Who's going to be there? What do I expect?"

The IWK says the You're in Charge program is largely underutilized, and it's hoping more families take part so they have clear expectations of how to switch into adult care.

Their main concern, says Dr. Elizabeth Stringer, is that patients will get lost in the shuffle, and possibly relapse.

"We know that when youth with chronic illnesses leave the pediatric system, there is often a significant proportion that we know do not get seen in the adult system," said Stringer, a pediatric rheumatologist. "We want to try to avoid that."

While Higgins was able to move to the hospital down the street, most patients finish treatment at the IWK once they graduate high school. Because the IWK is the children's hospital for the Maritimes, some may be trying to find specialists closer to home.

Stringer says the hospital makes a concerted effort to find them a new physician. But with some specialities, that can mean ending up on a wait list for care because of the doctor shortage.

"These young people are going to different universities or they live in different provinces, and there has been a big shortage particularly in New Brunswick and P.E.I. for adult rheumatologists."

Stringer says they do what they can to help, and each case is handled on an individual basis. 

"It's not that uncommon, actually, that unfortunately a year or two after the visit sometimes we get a parent that calls ... and they'll say my daughter didn't get an appointment or it's not working out with this new rheumatologist, can they come back to you?"

Stringer says her department has made the transition a common conversation with visits. She brings it up as frequently as taking their blood pressure or checking their vital signs.

The idea is to mentally prepare the patients and their parents.

"We say, 'over the next few visits, why don't we consider doing some of the visit on your own?" she said. "Then we would always bring the parents back into the visit at the end to go over things together. And so it's a gradual process."

Stringer says while patients are at the IWK, they're often seen by multi-disciplinary specialists. As they head to adult care, she encourages them to reconnect with their primary care provider, who can often help if they end up on other waitlists. 

Higgins encourages young patients to start making their own appointments, or call to order prescriptions.

"It's not as intimidating as it may seem."

Most of all, she's encouraging the patients to ask questions and get in touch.

"There's an excitement factor of the youth being able to take on their own health care and to make their own decisions, and to feel a little bit more in control of their own life. There's definitely mixed emotions that are involved in the process."